WorldWideScience

Sample records for research participant protection

  1. Basic Science Research and the Protection of Human Research Participants

    Science.gov (United States)

    Eiseman, Elisa

    2001-03-01

    Technological advances in basic biological research have been instrumental in recent biomedical discoveries, such as in the understanding and treatment of cancer, HIV/AIDS, and heart disease. However, many of these advances also raise several new ethical challenges. For example, genetic research may pose no physical risk beyond that of obtaining the initial blood sample, yet it can pose significant psychological and economic risks to research participants, such as stigmatization, discrimination in insurance and employment, invasion of privacy, or breach of confidentiality. These harms may occur even when investigators do not directly interact with the person whose DNA they are studying. Moreover, this type of basic research also raises broader questions, such as what is the definition of a human subject, and what kinds of expertise do Institutional Review Boards (IRBs) need to review the increasingly diverse types of research made possible by these advances in technology. The National Bioethics Advisory Commission (NBAC), a presidentially appointed federal advisory committee, has addressed these and other ethical, scientific and policy issues that arise in basic science research involving human participants. Two of its six reports, in particular, have proposed recommendations in this regard. "Research Involving Human Biological Materials: Ethical and Policy Guidance" addresses the basic research use of human tissues, cells and DNA and the protection of human participants in this type of research. In "Ethical and Policy Issues in the Oversight of Human Research" NBAC proposes a definition of research involving human participants that would apply to all scientific disciplines, including physical, biological, and social sciences, as well as the humanities and related professions, such as business and law. Both of these reports make it clear that the protection of research participants is key to conducting ethically sound research. By ensuring that all participants in

  2. The evolution of research participant protections in South Africa

    African Journals Online (AJOL)

    The legislative basis for scientific research was first promulgated in 1945. However, there was ... for participant protections, the protections in the Bill of Rights of the SA .... human beings;. • improved methods for the provision of health services;.

  3. Protection of the human research participant: A structured review

    African Journals Online (AJOL)

    related or social-science research involves a human participant. This ... quantitative studies, as well as review articles, were included, to enhance ... In the study by Gremillion et al.,[7] comparison was made between .... research stakeholders, who took part in interviews and focus- .... Contact persons ... Face to face.

  4. Protecting vulnerable research participants: a Foucault-inspired analysis of ethics committees.

    Science.gov (United States)

    Juritzen, Truls I; Grimen, Harald; Heggen, Kristin

    2011-09-01

    History has demonstrated the necessity of protecting research participants. Research ethics are based on a concept of asymmetry of power, viewing the researcher as powerful and potentially dangerous and establishing ethics committees as external agencies in the field of research. We argue in favour of expanding this perspective on relationships of power to encompass the ethics committees as one among several actors that exert power and that act in a relational interplay with researchers and participants. We employ Michel Foucault's ideas of power as an omnipresent force which is dynamic and unstable, as well as the notion that knowledge and power are inextricably intertwined. The article discusses how research ethics committees may affect academic freedom. In addition it is pointed out that research participants could be harmed - not only by unfortunate research practices, but also by being subjected to the protective efforts of ethics monitoring bodies.

  5. [The system of protection of scientific biomedical research participants in France and in Poland].

    Science.gov (United States)

    Czarkowski, Marek; Sieczych, Alicja

    2013-07-01

    Realizing scientific biomedical research conducted on human-beings demands obeying ample ethical rules. However, states keep independence in the means of implementing deontological guidelines to legislative acts. The aim of the article is to compare rules of law relative to protection of scientific biomedical research participants in two European Union member states--France and Poland. French regulations cover more types of scientific biomedical research than those in Poland. In France almost all types of interventional scientific biomedical research including research on human biological samples and research on cosmetics are covered by the rules of law. Polish regulations are limited to interventional research conducted by doctors and dentists. In both states projects of clinical trials of medicinal products demands double acceptance - from bioethics committee and from competent state authority. In protection of scientific biomedical research participants the role of state authority competent for personal data is more vital in France than it is in Poland. In France there is also National Ethics Advisory Committee whereas in Poland there is no such institution. The systems protecting scientific biomedical research participants differs therefore in both states in many vital aspects and French measures cover more types of scientific biomedical research, hence the level of participants protection in various types of research is more equitable.

  6. Rethinking Data Sharing and Human Participant Protection in Social Science Research: Applications from the Qualitative Realm

    Directory of Open Access Journals (Sweden)

    Dessi Kirilova

    2017-09-01

    Full Text Available While data sharing is becoming increasingly common in quantitative social inquiry, qualitative data are rarely shared. One factor inhibiting data sharing is a concern about human participant protections and privacy. Protecting the confidentiality and safety of research participants is a concern for both quantitative and qualitative researchers, but it raises specific concerns within the epistemic context of qualitative research. Thus, the applicability of emerging protection models from the quantitative realm must be carefully evaluated for application to the qualitative realm. At the same time, qualitative scholars already employ a variety of strategies for human-participant protection implicitly or informally during the research process. In this practice paper, we assess available strategies for protecting human participants and how they can be deployed. We describe a spectrum of possible data management options, such as de-identification and applying access controls, including some already employed by the Qualitative Data Repository (QDR in tandem with its pilot depositors. Throughout the discussion, we consider the tension between modifying data or restricting access to them, and retaining their analytic value. We argue that developing explicit guidelines for sharing qualitative data generated through interaction with humans will allow scholars to address privacy concerns and increase the secondary use of their data.

  7. Protection of human research participants: accreditation of programmes in the Indian context.

    Science.gov (United States)

    Bhosale, Neelambari; Nigar, Shagoofa; Das, Soma; Divate, Uma; Divate, Pathik

    2014-01-01

    The recent negative media reports on the status of participants in clinical trials in India, together with the concerns expressed by the regulatory bodies, have raised questions regarding India's credibility in the conduct of clinical research. Even though the regulations require the registration of trials with the Clinical Trial Registry-India and despite the recently mandated registration of ethics committees (ECs) with the Drugs Controller General of India, the lack of governmental audit and accreditation procedures and bodies has resulted in inadequate protection of human participants in clinical research. Institutions and research sites would benefit by implementing a human research protection programme, which would safeguard the rights, safety and wellbeing of participants in clinical trials, in addition to improving the processes and procedures for the conduct of the trial. The Jehangir Clinical Development Centre, Pune has received accreditation from the Association for the Accreditation of Human Research Protection Programme (AAHRPP). A unique feature of the AAHRPP is the integrative nature of the programme, wherein the sponsors of the trial, investigators, EC members and institution work towards the common goal of protecting research participants. Here, we discuss the improvement needed in the quality standards of institutions for them to be able to meet the requirements of the AAHRPP. We also suggest the need for a governmental accreditation body, which will be required for the future promotion of and improvement in the standards for clinical practice in India.

  8. Research Ethics in the Context of Transition: Gaps in Policies and Programs on the Protection of Research Participants in the Selected Countries of Central and Eastern Europe.

    Science.gov (United States)

    Famenka, Andrei

    2016-12-01

    This paper examines the ability of countries in Central and Eastern Europe (CEE) to ensure appropriate protection of research participants in the field of increasingly globalizing biomedical research. By applying an analytical framework for identifying gaps in policies and programs for human subjects protection to four countries of CEE-Belarus, Latvia, Lithuania, and Poland, substantial gaps in the scope and content of relevant policies and major impediments to program performance have been revealed. In these countries, public policies on the protection of research participants lack consistency and reliable mechanisms for their implementation. Impediments to program performance most often relate to inadequacies in the national research ethics systems with regard to organizational structure, budgetary support, supervision, and training. The level of research ethics capacity varies from country to country and depends on socio-economic and political factors of post-communist transition. The breadth and depth of the problems identified suggest that the current level of protection for research participants in CEE might be inadequate to the challenges posed by the globalization of biomedical research. In CEE countries, there is a need for strengthening research ethics capacity through modification of relevant policies and improvement of program management. The differences among the countries call for further research on identifying the best approaches for filling the gaps in the policies and programs aimed at ensuring effective protection of research participants.

  9. Undocumented Research Participants: Ethics and Protection in a Time of Fear

    Science.gov (United States)

    Lahman, Maria K. E.; Mendoza, Bernadette M.; Rodriguez, Katrina L.; Schwartz, Jana L.

    2011-01-01

    President Obama characterized Arizona's recent immigration law as undermining "basic notions of fairness that we cherish as Americans." The authors' extend the national discussion regarding immigration to ethics and research. Therefore, the purpose of this methodological article is to advance areas for ethical consideration when researching…

  10. [The role of bioethics committees in the systems protecting scientific biomedical research participants in France and in Poland].

    Science.gov (United States)

    Czarkowski, Marek; Sieczych, Alicja

    2013-08-01

    Bioethics committees are along with ethic regulations and rules of law one of three main pillars in the system of protection of scientific biomedical research participants. Although principal directives for bioethics committees are established by international guidelines, detailed regulations may differ in particular states. The aim of this article was to compare two bioethic committees systems: French and Polish one. Historical beginnings of the bioethics committees system in France and in Poland are briefly mentioned, Subsequently, the networks of bioethics committees in both countries are compared. Although the number of bioethics committees (Research Ethic Committees) in both countries is comparable, the procedure of their establishment varies. French committees are based on administrative division of the country and divide on regional and interregional committees. In Poland, bioethics committees are established by medical universities, medical research and development units or regional chambers of physicians and dentists. In France there is no equivalent of Appeal Bioethics Committee, however one could appeal from the negative bioethics committee's opinion. The composition of French bioethics committees is more diverse and half of the members are not related to medical professions. Members of French committees are named on indefinite term by headmaster of Regional Health Agency after having been chosen in competition for the post. In Poland members are called on three-year-term but the rotation of members is not overwhelming since there is no limit of terms for one member. French legal solutions seems more secure for scientific bioethics research participants. For this reason, a detailed research on legislation in other countries is necessary before introducing any new regulations in Polish law.

  11. eParticipation Research

    DEFF Research Database (Denmark)

    Medaglia, Rony

    2012-01-01

    Research on the use of information technology to support democratic decision-making (eParticipation) is experiencing ongoing growth, stimulated by an increasing attention from both practitioner and research communities. This study provides the first longitudinal analysis of the development of the e......Participation field based on a shared framework, capturing the directions that the research field of eParticipation is taking in recent developments. Drawing on a literature search covering the period from April 2006 to March 2011, this study identifies, analyzes, and classifies 122 research articles within...... also suggests new analytical categories of research. Drawing on the analysis, inputs for a research agenda are suggested. These include the need to move beyond a technological perspective, encouraging the ongoing shift of research focus from government to citizens and other stakeholders, and the need...

  12. The participating researcher

    DEFF Research Database (Denmark)

    Hansen, Louise Ejgod

    2014-01-01

    and abilities. The cases will be analyzed with focus on the strategy of participation and the value implications of this for each of them. The second part of the paper will address the role of the researcher as a part of each of these participatory cultural projects as designer, applied researcher, consultant......My paper will focus on the self-reflection of my role as participating researcher in three different art projects all of which have participation as a key element. The paper will begin with a presentation of the three cases: Theatre Talks (Teatersamtaler), Stepping Stones (Trædesten) and Art...... or evaluator. The role of me as a researcher with regard to the development and evaluation of the projects will be analyzed, trying to answer the question: What are the methodological differences between the approaches and how does that affect the research process and results. These differences...

  13. eParticipation Research

    DEFF Research Database (Denmark)

    Medaglia, Rony

    2011-01-01

    This paper provides an update of the existing eParticipation research state of the art, and a longitudinal analysis of the development of the eParticipation field based on a shared framework of analysis. Drawing on a literature search covering the period from April 2006 to March 2011 included, 123......, sometimes in counterintuitive directions. Drawing on the analysis, the conclusion section provides inputs for a research agenda. These include the need to move beyond a technological perspective, and encouraging the ongoing shift of research focus from government to citizens and other stakeholders....

  14. Children's participation in research

    DEFF Research Database (Denmark)

    Broström professor m.so., Stig

    2012-01-01

    In (post) modern society children are seen as active subjects and participants who have a legitimate basis in the United Nations Convention of the Rights of the Child. As a consequence of this, children are able to play an active role in the 10 planning of/and participation in both education...

  15. Researching participation in adult education

    DEFF Research Database (Denmark)

    Kondrup, Sissel

    It is a widespread perception that the challenge of increasing participation in adult education and training has intensified due to the transformation from industrial to knowledge based societies and the transformation implies that it becomes pivotal to increase the supply of highly qualified...... labour. This has fostered an interest in examining why and how people engage in adult education, how participation and especially non-participation in adult education can be explained and how participation rates can be increased. In this paper I outline different traditions within research on recruitment...... to and participation in adult education and training focusing primarily on unskilled and low skilled workers. I present how the traditions contribute to the perception of what effects participation and argue that the existing traditions must be extended and a new framework must be applied in order to understand how...

  16. Wood Protection Research Council: Research Priorities 2013

    Science.gov (United States)

    Carol A Clausen; Frederick Green III; Grant T. Kirker; Stan T. Lebow

    2014-01-01

    This report summarizes presentations and comments from the inaugural Wood Protection Research Council meeting. Research needs for the wood protection industry were identified and prioritized. Methods for successfully addressing research needs were discussed by industry, academia, and association representatives.

  17. Radiation protection research

    Energy Technology Data Exchange (ETDEWEB)

    Vanmarcke, H

    2002-04-01

    The objectives of the research in the field of radiation protection research performed at the Belgian Nuclear Research Centre SCK-CEN are (1) to elaborate and to improve methods and guidelines for the evaluation of restoration options for radioactively contaminated sites; (2) to develop, test and improve biosphere models for the performance assessment of radioactive waste disposal in near-surface or geological repositories; (3) to asses the impact of releases from nuclear or industrial installations; (4) to increase capabilities in mapping and surveying sites possibly or likely contaminated with enhanced levels of natural radiation; (5) to identify non nuclear industries producing NORM waste, to make an inventory of occurring problems and to propose feasible solutions or actions when required; (6) to maintain the know-how of retrospective radon measurements in real conditions and to assess radon decay product exposure by combining these techniques. Main achievements in these areas for 2001 are summarised.

  18. Radiation protection research

    International Nuclear Information System (INIS)

    Vanmarcke, H.

    2002-01-01

    The objectives of the research in the field of radiation protection research performed at the Belgian Nuclear Research Centre SCK-CEN are (1) to elaborate and to improve methods and guidelines for the evaluation of restoration options for radioactively contaminated sites; (2) to develop, test and improve biosphere models for the performance assessment of radioactive waste disposal in near-surface or geological repositories; (3) to asses the impact of releases from nuclear or industrial installations; (4) to increase capabilities in mapping and surveying sites possibly or likely contaminated with enhanced levels of natural radiation; (5) to identify non nuclear industries producing NORM waste, to make an inventory of occurring problems and to propose feasible solutions or actions when required; (6) to maintain the know-how of retrospective radon measurements in real conditions and to assess radon decay product exposure by combining these techniques. Main achievements in these areas for 2001 are summarised

  19. Radiation Protection Research: Radiobiology

    International Nuclear Information System (INIS)

    Desaintes, C.

    2000-01-01

    The main objectives of research in the field of radiobiology and epidemiology performed at the Belgian Nuclear Research Centre SCK-CEN are (1) to study cancer mortality in nuclear workers in Belgium; to document the feasibility of retrospective cohort studies in Belgium; (2) to participate in the IARC study; (3) to elucidate the molecular basis of the effects of ionising radiation in the mammalian embryo during the early phases of its development; (4) to assess the genetic risk of maternal exposure to ionizing radiation; (5) to elucidate the cellular mechanisms leading to brain damage after prenatal irradiation; (6) to advise authorities and to provide the general population with adequate information concerning the health risk arising from radiation exposure. Progress and major achievements in these topical areas in 1999 are reported

  20. Radiation Protection Research: Radiobiology

    Energy Technology Data Exchange (ETDEWEB)

    Desaintes, C

    2000-07-01

    The main objectives of research in the field of radiobiology and epidemiology performed at the Belgian Nuclear Research Centre SCK-CEN are (1) to study cancer mortality in nuclear workers in Belgium; to document the feasibility of retrospective cohort studies in Belgium; (2) to participate in the IARC study; (3) to elucidate the molecular basis of the effects of ionising radiation in the mammalian embryo during the early phases of its development; (4) to assess the genetic risk of maternal exposure to ionizing radiation; (5) to elucidate the cellular mechanisms leading to brain damage after prenatal irradiation; (6) to advise authorities and to provide the general population with adequate information concerning the health risk arising from radiation exposure. Progress and major achievements in these topical areas in 1999 are reported.

  1. Round Table: Integrating radiation protection research in the EU - European Joint Programme and participation of the Slovak Republic and Czech Republic national institutions in it

    International Nuclear Information System (INIS)

    Duranova, T.; Bohunova, J.; Raskop, W.; Schneider, T.; Liland, A.; Andronopoulos, S.; Mustonen, R.

    2014-01-01

    Activities of the NERIS-TP association are described. The NERIS ICRP Workshop, held in Bratislava, Slovak Republic in February 6-8, 2012, was organized by VUJE in cooperation with ICRP aiming to provide a forum for discussion and sharing of experiences on the implementation of the ICRP Recommendations. International, European and national perspectives were presented. 88 specialists from 51 organizations from 26 countries participated in the workshop. The final Dissemination Workshop 'Strengthening the Preparedness at National and Territorial Level Using New Tools and Methods - Stakeholders Experiences', was conducted in Oslo from 22 to 24 January 2014. International organisations such as HERCA, EC DG Research, IAEA, OECD/NEA, and NGOs such as NTW (Nuclear Transparency Watch) and GMF (Group of European Municipalities with Nuclear Facilities) as well as representatives of the OPERRA project participated in the workshop and particular panels. 82 experts and stakeholders participated in the workshop, representing twenty countries. Notably, participants from Japanese organisations provided first feedback from the management of the consequences of the Fukushima accident. (authors)

  2. Vulnerable participants in health research

    DEFF Research Database (Denmark)

    Nordentoft, Helle Merete; Nanna, Kappel

    2011-01-01

    Ethical guidelines for conducting research are embedded in the Helsinki declaration of 1964. We contend that these abstract and intentionally universal guidelines need to be appropriated for social and health care research in which purpose and methods often deviate from medical research. The guid......Ethical guidelines for conducting research are embedded in the Helsinki declaration of 1964. We contend that these abstract and intentionally universal guidelines need to be appropriated for social and health care research in which purpose and methods often deviate from medical research...... and problems of vulnerable patients and - at the same time - respect their integrity without exposing them unnecessarily? The article illuminates the interactional construction of roles and relationships and how they affect the contextual construction of vulnerability. In this respect we demonstrate...

  3. 42 CFR 483.420 - Condition of participation: Client protections.

    Science.gov (United States)

    2010-10-01

    ... 42 Public Health 5 2010-10-01 2010-10-01 false Condition of participation: Client protections. 483... Condition of participation: Client protections. (a) Standard: Protection of clients' rights. The facility must ensure the rights of all clients. Therefore, the facility must— (1) Inform each client, parent (if...

  4. Research in organizational participation and cooperation

    DEFF Research Database (Denmark)

    Jeppesen, Hans Jeppe; Jønsson, Thomas; Rasmussen, Thomas

    2005-01-01

    This article discusses some different perspectives on organizational participation and presents conducted and ongoing research projects by the research unit SPARK at Department of Psychology, University of Aarhus.......This article discusses some different perspectives on organizational participation and presents conducted and ongoing research projects by the research unit SPARK at Department of Psychology, University of Aarhus....

  5. Environmental research and environmental protection

    International Nuclear Information System (INIS)

    1975-01-01

    At the request of the Ministry for Research and Technology, the 'Arbeitsgemeinschaft der Grossforschungseinrichtungen' (AGF) presented in 1972 an information brochure called 'Activities in the field of environmental research and environmental protection', closely associated with the environmental programme of the Federal government (1971). The information brochure reports on those activities of the working group's members which are closely, or less closely, connected with questions concerning environmental research and protection, however, investments for the protection of the individual facilities in internal operation are excluded. The AGF programme 'Environmental research and environmental protection' comprises contributions, brought up to date, of member companies. From the 'AGF programme survey 1974' it contains 'Environmental research' as well as aspects of nuclear development with environmental relevance. Technologies not harmful to the environment developed by the research facilities are only mentioned very briefly. (orig.) [de

  6. Do Research Participants Trust Researchers or Their Institution?

    Science.gov (United States)

    Guillemin, Marilys; Barnard, Emma; Allen, Anton; Stewart, Paul; Walker, Hannah; Rosenthal, Doreen; Gillam, Lynn

    2018-07-01

    Relationships of trust between research participants and researchers are often considered paramount to successful research; however, we know little about participants' perspectives. We examined whom research participants trusted when taking part in research. Using a qualitative approach, we interviewed 36 research participants, including eight Indigenous participants. Thematic analysis was used to analyze the data. This article focuses on findings related to non-Indigenous participants. In contrast to Indigenous participants, non-Indigenous participants placed their trust in research institutions because of their systems of research ethics, their reputation and prestige. Researchers working in non-Indigenous contexts need to be cognizant that the trust that participants place in them is closely connected with the trust that participants have in the institution.

  7. Drivers and socioeconomic impacts of tourism participation in protected areas.

    Science.gov (United States)

    Liu, Wei; Vogt, Christine A; Luo, Junyan; He, Guangming; Frank, Kenneth A; Liu, Jianguo

    2012-01-01

    Nature-based tourism has the potential to enhance global biodiversity conservation by providing alternative livelihood strategies for local people, which may alleviate poverty in and around protected areas. Despite the popularity of the concept of nature-based tourism as an integrated conservation and development tool, empirical research on its actual socioeconomic benefits, on the distributional pattern of these benefits, and on its direct driving factors is lacking, because relevant long-term data are rarely available. In a multi-year study in Wolong Nature Reserve, China, we followed a representative sample of 220 local households from 1999 to 2007 to investigate the diverse benefits that these households received from recent development of nature-based tourism in the area. Within eight years, the number of households directly participating in tourism activities increased from nine to sixty. In addition, about two-thirds of the other households received indirect financial benefits from tourism. We constructed an empirical household economic model to identify the factors that led to household-level participation in tourism. The results reveal the effects of local households' livelihood assets (i.e., financial, human, natural, physical, and social capitals) on the likelihood to participate directly in tourism. In general, households with greater financial (e.g., income), physical (e.g., access to key tourism sites), human (e.g., education), and social (e.g., kinship with local government officials) capitals and less natural capital (e.g., cropland) were more likely to participate in tourism activities. We found that residents in households participating in tourism tended to perceive more non-financial benefits in addition to more negative environmental impacts of tourism compared with households not participating in tourism. These findings suggest that socioeconomic impact analysis and change monitoring should be included in nature-based tourism management systems

  8. Drivers and Socioeconomic Impacts of Tourism Participation in Protected Areas

    Science.gov (United States)

    Liu, Wei; Vogt, Christine A.; Luo, Junyan; He, Guangming; Frank, Kenneth A.; Liu, Jianguo

    2012-01-01

    Nature-based tourism has the potential to enhance global biodiversity conservation by providing alternative livelihood strategies for local people, which may alleviate poverty in and around protected areas. Despite the popularity of the concept of nature-based tourism as an integrated conservation and development tool, empirical research on its actual socioeconomic benefits, on the distributional pattern of these benefits, and on its direct driving factors is lacking, because relevant long-term data are rarely available. In a multi-year study in Wolong Nature Reserve, China, we followed a representative sample of 220 local households from 1999 to 2007 to investigate the diverse benefits that these households received from recent development of nature-based tourism in the area. Within eight years, the number of households directly participating in tourism activities increased from nine to sixty. In addition, about two-thirds of the other households received indirect financial benefits from tourism. We constructed an empirical household economic model to identify the factors that led to household-level participation in tourism. The results reveal the effects of local households' livelihood assets (i.e., financial, human, natural, physical, and social capitals) on the likelihood to participate directly in tourism. In general, households with greater financial (e.g., income), physical (e.g., access to key tourism sites), human (e.g., education), and social (e.g., kinship with local government officials) capitals and less natural capital (e.g., cropland) were more likely to participate in tourism activities. We found that residents in households participating in tourism tended to perceive more non-financial benefits in addition to more negative environmental impacts of tourism compared with households not participating in tourism. These findings suggest that socioeconomic impact analysis and change monitoring should be included in nature-based tourism management systems

  9. Drivers and socioeconomic impacts of tourism participation in protected areas.

    Directory of Open Access Journals (Sweden)

    Wei Liu

    Full Text Available Nature-based tourism has the potential to enhance global biodiversity conservation by providing alternative livelihood strategies for local people, which may alleviate poverty in and around protected areas. Despite the popularity of the concept of nature-based tourism as an integrated conservation and development tool, empirical research on its actual socioeconomic benefits, on the distributional pattern of these benefits, and on its direct driving factors is lacking, because relevant long-term data are rarely available. In a multi-year study in Wolong Nature Reserve, China, we followed a representative sample of 220 local households from 1999 to 2007 to investigate the diverse benefits that these households received from recent development of nature-based tourism in the area. Within eight years, the number of households directly participating in tourism activities increased from nine to sixty. In addition, about two-thirds of the other households received indirect financial benefits from tourism. We constructed an empirical household economic model to identify the factors that led to household-level participation in tourism. The results reveal the effects of local households' livelihood assets (i.e., financial, human, natural, physical, and social capitals on the likelihood to participate directly in tourism. In general, households with greater financial (e.g., income, physical (e.g., access to key tourism sites, human (e.g., education, and social (e.g., kinship with local government officials capitals and less natural capital (e.g., cropland were more likely to participate in tourism activities. We found that residents in households participating in tourism tended to perceive more non-financial benefits in addition to more negative environmental impacts of tourism compared with households not participating in tourism. These findings suggest that socioeconomic impact analysis and change monitoring should be included in nature-based tourism

  10. Promoting research participation: why not advertise altruism?

    Science.gov (United States)

    Williams, Brian; Entwistle, Vikki; Haddow, Gill; Wells, Mary

    2008-04-01

    Participation rates have a major impact on the quality, cost and timeliness of health research. There is growing evidence that participation rates may be falling and that new research governance structures and procedures may be increasing the likelihood of recruitment bias. It may be possible to encourage public reflection about research participation and enhance recruitment by providing information about the potential benefits of research to others as well as to research participants and by stimulating debate and influencing social expectations about involvement. Publicly funded and charitable bodies use various forms of advertising to encourage altruistic behaviour and generate social expectations about donating money, blood and organs for the benefit of others. Consideration should be given to the use of similar persuasive communications to promote wider participation in health research generally.

  11. Social Media Resources for Participative Design Research

    OpenAIRE

    Qaed, Fatema; Briggs, Jo; Cockton, Gilbert

    2016-01-01

    We present our experiences of novel value from online social media for Participative Design (PD) research. We describe how particular social media (e.g. Facebook, Pinterest, WhatsApp and Twitter) were used during a five-year project on learning space design by the researcher and interested teachers across all research phases (contextual review, user studies, PD action research). Social media were used to source and share comments, photographs and video documentation, supporting participation ...

  12. Child Participant Roles in Applied Linguistics Research

    Science.gov (United States)

    Pinter, Annamaria

    2014-01-01

    Children's status as research participants in applied linguistics has been largely overlooked even though unique methodological and ethical concerns arise in projects where children, rather than adults, are involved. This article examines the role of children as research participants in applied linguistics and discusses the limitations of…

  13. Radiation protection in medical and biomedical research

    International Nuclear Information System (INIS)

    Fuente Puch, A.E. de la

    2013-01-01

    The human exposure to ionizing radiation in the context of medical and biomedical research raises specific ethical challenges whose resolution approaches should be based on scientific, legal and procedural matters. Joint Resolution MINSAP CITMA-Regulation 'Basic Standards of Radiation Safety' of 30 November 2001 (hereafter NBS) provides for the first time in Cuba legislation specifically designed to protect patients and healthy people who participate in research programs medical and biomedical and exposed to radiation. The objective of this paper is to demonstrate the need to develop specific requirements for radiation protection in medical and biomedical research, as well as to identify all the institutions involved in this in order to establish the necessary cooperation to ensure the protection of persons participating in the investigation

  14. Paternalism and utilitarianism in research with human participants.

    Science.gov (United States)

    Resnik, David B

    2015-03-01

    In this article I defend a rule utilitarian approach to paternalistic policies in research with human participants. Some rules that restrict individual autonomy can be justified on the grounds that they help to maximize the overall balance of benefits over risks in research. The consequences that should be considered when formulating policy include not only likely impacts on research participants, but also impacts on investigators, institutions, sponsors, and the scientific community. The public reaction to adverse events in research (such as significant injury to participants or death) is a crucial concern that must be taken into account when assessing the consequences of different policy options, because public backlash can lead to outcomes that have a negative impact on science, such as cuts in funding, overly restrictive regulation and oversight, and reduced willingness of individuals to participate in research. I argue that concern about the public reaction to adverse events justifies some restrictions on the risks that competent, adult volunteers can face in research that offers them no significant benefits. The paternalism defended here is not pure, because it involves restrictions on the rights of investigators in order to protect participants. It also has a mixed rationale, because individual autonomy may be restricted not only to protect participants from harm but also to protect other stakeholders. Utility is not the sole justification for paternalistic research policies, since other considerations, such as justice and respect for individual rights/autonomy, must also be taken into account.

  15. Research plan for external radiation protection research 1994/95

    International Nuclear Information System (INIS)

    1994-01-01

    A broad outline of the research financed by the Swedish Radiation Protection Institute but performed outside the Institute. The fiscal year 94/95 is the last year of a three year research plan, and has a budget of about 21 MSEK (close to 3 MUSD). 9.5 MSEK is spent on research connected to nuclear power, 4.1 MSEK on other radiation protection and 3.3 MSEK on participation in the research program of the European Union. Short descriptions of the different areas are given in the report

  16. Research report on radiation protection 1981

    International Nuclear Information System (INIS)

    1982-07-01

    In this research report on radiation protection the results achieved in 1981 of the research and development projects assisted by the Federal Minister of the Interior are made accessible above all to the scientists and engineers participating in this research program as well as to the research institutions on the field of radiation protection, to the members of the commission on radiological protection and of the commission for reactor safety and to the supervising and licensing authorities. The report is a compilation of individual reports, which are composed by the consignees respectively the recipients of the allowances themselves as a documentation of the progress of their works. Each individual report contains informations concerning the objectives of the project, works carried out, results achieved and further work planned. (orig.) [de

  17. Regional labour market research on participation rates

    NARCIS (Netherlands)

    Elhorst, J.P.

    1996-01-01

    This article reviews the methodology of 17 empirical studies in which the participation rate has been estimated with the help of regional data. After defining and pointing our the orientation of regional labour market research on participation rates, three methodological issues dominate the

  18. Genomic research and wide data sharing: views of prospective participants.

    Science.gov (United States)

    Trinidad, Susan Brown; Fullerton, Stephanie M; Bares, Julie M; Jarvik, Gail P; Larson, Eric B; Burke, Wylie

    2010-08-01

    Sharing study data within the research community generates tension between two important goods: promoting scientific goals and protecting the privacy interests of study participants. This study was designed to explore the perceptions, beliefs, and attitudes of research participants and possible future participants regarding genome-wide association studies and repository-based research. Focus group sessions with (1) current research participants, (2) surrogate decision-makers, and (3) three age-defined cohorts (18-34 years, 35-50, >50). Participants expressed a variety of opinions about the acceptability of wide sharing of genetic and phenotypic information for research purposes through large, publicly accessible data repositories. Most believed that making de-identified study data available to the research community is a social good that should be pursued. Privacy and confidentiality concerns were common, although they would not necessarily preclude participation. Many participants voiced reservations about sharing data with for-profit organizations. Trust is central in participants' views regarding data sharing. Further research is needed to develop governance models that enact the values of stewardship.

  19. The participation of children in Dutch child protection investigations: A case file analysis

    NARCIS (Netherlands)

    Bouma, Helen; Grietens, Hans; López López, Mónica; Knorth, Erik J.; Witte, Susanne

    2017-01-01

    Objectives - In scientific research there is growing attention for the importance of children’s participation in decision-making in the child protection system (CPS). In the Dutch Youth Act (2015), the importance of participation of children is highlighted as well. However, research in different

  20. Participant Action Research and Environmental Education

    Directory of Open Access Journals (Sweden)

    Yasmin Coromoto Requena Bolívar

    2018-02-01

    Full Text Available The committed participation of the inhabitants in diverse Venezuelan communities is fundamental in the search of solution to environmental problems that they face in the daily life; in the face of this reality, studies based on Participant Action Research were addressed, through a review and documentary analysis of four works related to community participation, carried out in the state of Lara. For this, the following question was asked: ¿What was the achievement in the solution of environmental problems in the communities, reported through the master's degree works oriented under participant action research and presented to Yacambú University in 2011-2013? A qualitative approach is used, approaching the information according to the stages suggested by Arias (2012: Search of sources, initial reading of documents, preparation of the preliminary scheme, data collection, analysis and interpretation of the information, formulation of the final scheme, introduction and conclusions, final report. It begins with the definition of the units of analysis and inquiry of the literature, through theoretical positions, concepts and contributions on: participant action research, participation and environmental education, to culminate with the analysis and interpretation of the information and the conclusions of this investigation. For the collection of the data, the bibliographic records were used with the purpose of organizing the information on the researches consulted, and of summary for the synthesis of the documents. It was concluded that, in the analyzed degree works, the purpose of the IAP was fulfilled, which consisted in the transformation of the problem-situation, which allowed the IAP to become the propitious scenario to promote environmental participation and education not formal.

  1. The institutionalization of children's participation in a child protective service

    OpenAIRE

    Compte Nunes, Guillem

    2015-01-01

    [EN] In order to advance toward an understanding of the mechanisms of social transformation, overcoming the rhetoric about the importance of children’s participation and the marginalization of the knowledge on children’s issues, this paper identifies facilitating factors for and barriers against the institutionalization of children’s participation in a public child protective service. The results are interpreted through the 4I model of organizational learning. They highlight th...

  2. Biological Research for Radiation Protection

    International Nuclear Information System (INIS)

    Kim, In Gyu; Kim, Kug Chan; Jung, Il Lae; Choi, Yong Ho; Kim, Jin Sik; Moon, Myung Sook; Byun, Hee Sun; Phyo, Ki Heon; Kim, Sung Keun

    2005-04-01

    The work scope of 'Biological Research for the Radiation Protection' had contained the research about ornithine decarboxylase and its controlling proteins, thioredoxin, peroxiredoxin, S-adenosymethionine decarboxylase, and glutamate decarboxylase 67KD effect on the cell death triggered ionizing radiation and H 2 O 2 (toxic agents). In this study, to elucidate the role of these proteins in the ionizing radiation (or H 2 O 2 )-induced apoptotic cell death, we utilized sensesed (or antisensed) cells, which overexpress (or down-regulate) RNAs associated with these proteins biosynthesis, and investigated the effects of these genes on the cytotoxicity caused by ionizing radiation and H 2 O 2 (or paraquat). We also investigated whether genisteine(or thiamine) may enhance the cytotoxic efficacy of tumor cells caused by ionizing radiation (may enhance the preventing effect radiation or paraquat-induced damage) because such compounds are able to potentiate the cell-killing or cell protecting effects. Based on the above result, we suggest that the express regulation of theses genes have potentially importance for sensitizing the efficiency of radiation therapy of cancer or for protecting the radiation-induced damage of normal cells

  3. Improving medical students’ participation in research

    Directory of Open Access Journals (Sweden)

    Menon R

    2018-01-01

    Full Text Available Rahul Menon, Vishnou Mourougavelou, Arjun MenonFaculty of Medicine, Imperial College London, London, UKWe read with great interest the review by Siddaiah-Subramanya et al1 regarding the difficulty for medical students to participate in research, in developing countries. From our own experience as medical students, we agree that organizational factors, adequacy of knowledge, and variability in “attitudes” may all contribute to difficulty in participating in research. Nevertheless, we propose that the introduction of research projects, which may be part of an intercalated degree, could help improve medical students’ involvement in research.Author's replyManjunath Siddaiah-Subramanya,1,2 Harveen Singh,3 Kor Woi Tiang1,21Department of Surgery, Logan Hospital, Meadowbrook, 2Department of Medicine, Griffith University, Nathan, 3Department of Gastroenterology, Lady Cilento Children’s Hospital, Brisbane, QLD, Australia We would like to thank Menon et al for the letter in response to our article.1 We note that an overarching theme in the letter is the situation in countries where research at medical school could be improved. In the letter, Menon et al have brought out a couple of important issues: one is that the problem is multifactorial, and the other is the fact that opportunities and encouragement need to be provided to the students so that they could get more involved in research.View the original paper by Siddaiah-Subramanya and colleagues.

  4. Sharing Research Findings with Research Participants and Communities

    Directory of Open Access Journals (Sweden)

    LE Ferris

    2011-06-01

    Full Text Available In occupational and environmental health research, individual, group and community research participants have a unique and vested interest in the research findings. The ethical principles of autonomy, non-maleficence and beneficence are helpful in considering the ethical issues in the disclosure of research findings in occupational and environmental health research. Researchers need to include stakeholders, such as groups and communities, in these discussions and in planning for the dissemination of research findings. These discussions need to occur early in the research process.

  5. Access, entry and researcher-participant position

    DEFF Research Database (Denmark)

    Louw, Arnt Vestergaard

    2015-01-01

    This article reports on methodological experiences obtained in an anthropologically inspired qualitative study among students of carpentry in Denmark. On the one hand the article deals with methodological issues of doing anthropological research among students of carpentry, while on the other...... it deals with the research findings that such a research design produced. As well as the methodological issues of researcher access, entry and participant position in the field, this article reports on the following questions: What kinds of implicit expectations of the students are embedded in the way...... the school introduces and initiates the programme? What kinds of effects does this have on the motivation of the students? How do the terms and professional language of the profession work on the individual students in including and excluding ways? These specific descriptions of classroom pedagogy, inspired...

  6. Pockets of Participation: Revisiting Child-Centred Participation Research

    Science.gov (United States)

    Franks, Myfanwy

    2011-01-01

    This article revisits the theme of the clash of interests and power relations at work in participatory research which is prescribed from above. It offers a possible route toward solving conflict between adult-led research carried out by young researchers, funding requirements and organisational constraints. The article explores issues of…

  7. Ethical Considerations in Research Participation Virality.

    Science.gov (United States)

    Ellis-Barton, Carol

    2016-07-01

    This article seeks to commence and encourage discussion around the upcoming ethical challenges of virality in network structures. When the call for participation in a research project on lupus in Ireland went from an advertisement in a newsletter to a meme (unit of transmissible information) on a closed Facebook page, the ethical considerations of virality were raised. The article analyzes the Association of Internet Researchers guidelines, Facebook policies, and the context of privacy in relation to virality. Virality creates the leverage for methodological pluralism. The nature of the inquiry can determine the method rather than the other way around. Viral ethical considerations are evolving due to the cyber world becoming the primary meme of communication, with flexibility in the researcher's protocol providing opportunities for efficient, cost-effective, and diverse recruitment. © The Author(s) 2016.

  8. Research Participants' Understanding of and Reactions to Certificates of Confidentiality.

    Science.gov (United States)

    Beskow, Laura M; Check, Devon K; Ammarell, Natalie

    2014-01-01

    Certificates of Confidentiality are intended to facilitate participation in critical public health research by protecting against forced disclosure of identifying data in legal proceedings, but little is known about the effect of Certificate descriptions in consent forms. To gain preliminary insights, we conducted qualitative interviews with 50 HIV-positive individuals in Durham, North Carolina to explore their subjective understanding of Certificate descriptions and whether their reactions differed based on receiving a standard versus simplified description. Most interviewees were neither reassured nor alarmed by Certificate information, and most said it would not influence their willingness to participate or provide truthful information. However, compared with those receiving the simplified description, more who read the standard description said it raised new concerns, that their likelihood of participating would be lower, and that they might be less forthcoming. Most interviewees said they found the Certificate description clear, but standard-group participants often found particular words and phrases confusing, while simplified-group participants more often questioned the information's substance. Valid informed consent requires comprehension and voluntariness. Our findings highlight the importance of developing consent descriptions of Certificates and other confidentiality protections that are simple and accurate. These qualitative results provide rich detail to inform a larger, quantitative study that would permit further rigorous comparisons.

  9. Drivers and Socioeconomic Impacts of Tourism Participation in Protected Areas

    OpenAIRE

    Liu, Wei; Vogt, Christine A.; Luo, Junyan; He, Guangming; Frank, Kenneth A.; Liu, Jianguo

    2012-01-01

    Nature-based tourism has the potential to enhance global biodiversity conservation by providing alternative livelihood strategies for local people, which may alleviate poverty in and around protected areas. Despite the popularity of the concept of nature-based tourism as an integrated conservation and development tool, empirical research on its actual socioeconomic benefits, on the distributional pattern of these benefits, and on its direct driving factors is lacking, because relevant long-te...

  10. A novice researcher's reflection on recruiting participants for qualitative research.

    Science.gov (United States)

    Marks, Anne; Wilkes, Lesley; Blythe, Stacy; Griffiths, Rhonda

    2017-09-19

    This paper is a reflection by a PhD candidate on her qualitative study involving parents, diabetes educators and school teachers who were caring for a child with type 1 diabetes using intensive insulin therapy in primary school. To reflect on a novice researcher's experience of recruiting research participants from community, health and education settings in Australia. Participants were successfully recruited for the study using internet communication tools: Facebook support groups; the Australian Diabetes Educators Association (ADEA) e-newsletter; and emails sent to school principals. These methods were successful as Facebook and online support groups are popular, the study topic was of interest, the ADEA has many members, and numerous emails were sent to schools. Potential barriers to recruitment were a lack of access to those who did not use Facebook or the internet, gatekeepers, the high workloads of diabetes educators and teachers, and the time needed to obtain ethics approval and send a large number of emails to schools. Internet communication tools were successful in recruiting participants from community, health and education settings. However, different approaches were required for each type of participant. Lessons learned from this experience were: the importance of taking time to plan recruitment, including an in-depth understanding of potential participants and recruitment tools, the benefit of being an insider, and the need to work closely with gatekeepers. An understanding of recruitment is essential for ensuring access to appropriate participants and timely collection of data. The experience of the novice researcher may provide insight to others planning to use internet communication tools for recruitment. ©2012 RCN Publishing Company Ltd. All rights reserved. Not to be copied, transmitted or recorded in any way, in whole or part, without prior permission of the publishers.

  11. Biological research for radiation protection

    Energy Technology Data Exchange (ETDEWEB)

    Kim, In Gyu; Kim, Kug Chan; Shim, Hae Won; Oh, Tae Jeong; Park, Seon Young; Lee, Kang Suk

    2000-04-01

    The work scope of Biological research for the radiation protection had contained the search of biological microanalytic methods for assessing the health effect by {gamma}-radiation and toxic agents, the standardization of human T-lymphocyte cell culture and polymerase chain reaction, T-cell clonal assay, and the quantification of mutation frequency in the hypoxanthine (guanine) phosphoribosyl transferase (HPRT) gene locus by single exposure or combined exposure. Especially, the polymerase chain reaction methods using reverse transcriptase has been developed to analyze the mutant gene induced by {gamma}-radiation and chemical (pentachlorophenol) agent exposure, and to investigate the point mutations in the HPRT gene locus of T-lymphocytes. The HPRT T-cell clonal assay revealed that it could not differentiate {gamma}-irradiation from pentachlorophenol, because the frequency of somatic mutations induced by both damaging agents increased in a dose-dependent manner. The analysis of DNA sequence alterations of HPRT mutant clones clearly showed that both damaging agents induced different mutational spectra in the HPRT locus of T-cells. The large deletions, which account for 75 percent of the analyzed mutants, are characteristic mutations induced by {gamma}-irradiation. By contrast, point mutations such as base substitutions and insertion, come up to 97 percent in the case of pentachlorophenol-treated cells. The point mutation frequencies at 190 base pair and 444 base pair positions are 3-6 folds as high as in those at other mutation positions. It may be that these mutation sites are hot spots induced by pentachlorophenol. These results suggest that the HPRT mutation spectrum can be used as a potential bio marker for assessing a specific environmental risk. (author)

  12. Biological research for radiation protection

    International Nuclear Information System (INIS)

    Kim, In Gyu; Kim, Kug Chan; Shim, Hae Won; Oh, Tae Jeong; Park, Seon Young; Lee, Kang Suk

    2000-04-01

    The work scope of Biological research for the radiation protection had contained the search of biological microanalytic methods for assessing the health effect by γ-radiation and toxic agents, the standardization of human T-lymphocyte cell culture and polymerase chain reaction, T-cell clonal assay, and the quantification of mutation frequency in the hypoxanthine (guanine) phosphoribosyl transferase (HPRT) gene locus by single exposure or combined exposure. Especially, the polymerase chain reaction methods using reverse transcriptase has been developed to analyze the mutant gene induced by γ-radiation and chemical (pentachlorophenol) agent exposure, and to investigate the point mutations in the HPRT gene locus of T-lymphocytes. The HPRT T-cell clonal assay revealed that it could not differentiate γ-irradiation from pentachlorophenol, because the frequency of somatic mutations induced by both damaging agents increased in a dose-dependent manner. The analysis of DNA sequence alterations of HPRT mutant clones clearly showed that both damaging agents induced different mutational spectra in the HPRT locus of T-cells. The large deletions, which account for 75 percent of the analyzed mutants, are characteristic mutations induced by γ-irradiation. By contrast, point mutations such as base substitutions and insertion, come up to 97 percent in the case of pentachlorophenol-treated cells. The point mutation frequencies at 190 base pair and 444 base pair positions are 3-6 folds as high as in those at other mutation positions. It may be that these mutation sites are hot spots induced by pentachlorophenol. These results suggest that the HPRT mutation spectrum can be used as a potential bio marker for assessing a specific environmental risk. (author)

  13. Local Stakeholder Perception on Community Participation in Marine Protected Area Management: A Q-Method Approach

    Science.gov (United States)

    Megat Jamual Fawaeed, P. S.; Daim, M. S.

    2018-02-01

    Local stakeholder involvement in Marine Protected Area (MPA) management can bring to a successful MPA. Generally, participatory research in marine protected area management is exploring the relationship between marine protected area management approach adopted by the management agencies and the level of participation of local stakeholder whom reside within the marine protected areas. However, the scenario of local community participation in MPA management in Malaysia seems discouraging and does not align with the International Aichi Biodiversity Target 2020. In order to achieve the International Aichi Biodiversity Target 2020, this paper attempts to explore the methodology on participatory research towards the local stakeholder of Pulau Perhentian Marine Park (PPMP), Terengganu, Malaysia. A Q-methodology is used to investigate the perspective of local stakeholder who represents different stances on the issues, by having participants rank and sort a series of statements by comply quantitative and qualitative method in collecting the data. A structured questionnaire will be employed across this study by means of face-to-face interview. In total, 210 respondents from Kampung Pasir Hantu are randomly selected. Meanwhile, a workshop with the agency (Department of Marine Park) had been held to discuss about the issues faces on behalf of management that manage the PPMP. Using the Q-method, researcher acknowledged wise viewpoints, reflecting how different stakeholders’ perception and opinion about community participation with highlights the current level of community participation in MPA. Thus, this paper describes the phases involved in this study, methodology and analysis used in making a conclusion .

  14. Researchers' perspectives on pediatric obesity research participant recruitment.

    Science.gov (United States)

    Parikh, Yasha; Mason, Maryann; Williams, Karen

    2016-12-01

    Childhood obesity prevalence has tripled over the last three decades. Pediatric obesity has important implications for both adult health as well as the United States economy. In order to combat pediatric obesity, exploratory studies are necessary to create effective interventions. Recruitment is an essential part of any study, and it has been challenging for all studies, especially pediatric obesity studies. The objective of this study was to understand barriers to pediatric obesity study recruitment and review facilitators to overcome recruitment difficulties. Twenty four childhood obesity researchers were contacted. Complete data for 11 researchers were obtained. Interviews were transcribed and analyzed using content analysis. Grounded Theory methodological approach was used, as this was an exploratory study. Investigators YP and MM coded the interviews using 28 codes. Barriers to recruitment included: family and study logistics, family economics, lack of provider interest, invasive protocols, stigma, time restraints of clinicians, lack of patient motivation/interest, groupthink of students in a classroom, and participants who do not accept his or her own weight status. Facilitators to enhance recruitment practices included accommodating participants outside of regular clinic hours, incentivizing participants, cultivating relationships with communities, schools and clinics prior to study recruitment, emphasizing benefits of a study for the patient, and shifting language to focus on health rather than obesity. Pediatric obesity researchers face many standard and some unique challenges to recruitment, reflecting challenges common to clinical research as well as some specific to pediatrics and some specific to obesity research. Both pediatric studies as well as obesity studies are an added challenge to the already-difficult task of general study recruitment. Our findings can be used to make researchers more aware of potential difficulties, approaches and on

  15. Technology under Planetary Protection Research (PPR)

    Data.gov (United States)

    National Aeronautics and Space Administration — Planetary protection involves preventing biological contamination on both outbound and sample return missions to other planetary bodies. Numerous areas of research...

  16. Considering Actionability at the Participant's Research Setting Level for Anticipatable Incidental Findings from Clinical Research.

    Science.gov (United States)

    Ortiz-Osorno, Alberto Betto; Ehler, Linda A; Brooks, Judith

    2015-01-01

    Determining what constitutes an anticipatable incidental finding (IF) from clinical research and defining whether, and when, this IF should be returned to the participant have been topics of discussion in the field of human subject protections for the last 10 years. It has been debated that implementing a comprehensive IF-approach that addresses both the responsibility of researchers to return IFs and the expectation of participants to receive them can be logistically challenging. IFs have been debated at different levels, such as the ethical reasoning for considering their disclosure or the need for planning for them during the development of the research study. Some authors have discussed the methods for re-contacting participants for disclosing IFs, as well as the relevance of considering the clinical importance of the IFs. Similarly, other authors have debated about when IFs should be disclosed to participants. However, no author has addressed how the "actionability" of the IFs should be considered, evaluated, or characterized at the participant's research setting level. This paper defines the concept of "Actionability at the Participant's Research Setting Level" (APRSL) for anticipatable IFs from clinical research, discusses some related ethical concepts to justify the APRSL concept, proposes a strategy to incorporate APRSL into the planning and management of IFs, and suggests a strategy for integrating APRSL at each local research setting. © 2015 American Society of Law, Medicine & Ethics, Inc.

  17. Nurses' experiences of participation in a research and development programme

    DEFF Research Database (Denmark)

    Jensen, Kirsten Pryds; Bäck-Pettersson, Siv; Kýlén, Sven

    2013-01-01

    To describe clinical nurses' experience of participating in a Research and Development (R&D) programme and its influence on their research interest and ability to conduct and apply nursing research......To describe clinical nurses' experience of participating in a Research and Development (R&D) programme and its influence on their research interest and ability to conduct and apply nursing research...

  18. Trade Union Participation in University Research Policies.

    Science.gov (United States)

    Leydesdorff, Loet

    1984-01-01

    The recent development of Dutch research coordination agencies, the Science Shops, forms the context for a description of the relationship between university research and policy at Amsterdam University and the national trade union organization. Management tools such as project financing and other elements of this system are discussed. (MSE)

  19. Participative Action Research: The Vision Conference

    Directory of Open Access Journals (Sweden)

    René Victor Valqui Vidal

    2003-11-01

    Full Text Available This paper presents the principles behind the design and management of the Vision Conference: a one-day workshop for a large group of participants endeavoured to create ideas, projects and visions for the future activities of a local community or an organisation. A case study from a local community in Denmark is also presented with the purpose of illustrating the organisation, planning and management of a Vision Conference. The paper focuses in the three central social processes of the conference: group work, problem solving and facilitation. The paper ends with a discussion of creativity and creativity techniques suitable for Vision Conferences.

  20. Regulating hematology/oncology research involving human participants.

    Science.gov (United States)

    Kapp, Marshall B

    2002-12-01

    The conduct of hematology/oncology research, particularly clinical trials involving human participants, is an extensively regulated enterprise. Professionals in the specialty of hematology/oncology have important stakes in the success of biomedical research endeavors. Knowledge about and compliance strategies regarding the pertinent regulatory parameters are essential for avoiding negative legal repercussions for involved professionals. At the same time, there is a need to be aware of and actively resist the danger that strong [legal] protectionism might inadvertently result in undermining physician investigators' sense of personal moral responsibility in the conduct of human experiments. For all the limitations of that virtue in the protection of human subjects, it is surely not one that we would want medical scientists to be without [47]. Members of the potential participant pool, financial sponsors, and the general public must be convinced that everyone involved in the research enterprise is committed to operating within acceptable legal and ethical boundaries if the atmosphere of confidence and trust that is indispensable to the continued process and progress of investigation aimed at extending and improving quality of life for all of us in the future is to continue and flourish [48].

  1. Radiation Protection Research: Radiological Assessment

    International Nuclear Information System (INIS)

    Zeevaert, T.

    2000-01-01

    The objectives of SCK-CEN's research in the field of radiological impact assessment are (1) to elaborate and to improve methods and guidelines for the evaluation of restoration options for contaminated sites; (2) to develop, test and improve biosphere models for the performance assessment of radioactive waste disposal in near-surface or geological repositories; (3) to asses the impact of releases from nuclear or industrial installations. Main achievements in these areas for 2000 are summarised

  2. Industry Participation in Defence Research and Development,

    Science.gov (United States)

    1983-12-01

    Research and Development: Proposals for Additional Incentives. ASTEC , 1990. K . Interaction between Industry, Higher Education and Government Laboratories...Incentives for Innovation in Australian Industry. ASTEC , 1983. P. Bibliography. Distribution Document Control Data Sheet AWA I A& I 14l2 p/O)OIP (02... ASTEC and the Senate Committee on Science and the Environment. My Department is already preparing advice for me in this regard and I shall ask them to

  3. Parents, adolescents, and consent for research participation.

    Science.gov (United States)

    Iltis, Ana S

    2013-06-01

    Decisions concerning children in the health care setting have engendered significant controversy and sparked ethics policies and statements, legal action, and guidelines regarding who ought to make decisions involving children and how such decisions ought to be made. Traditionally, parents have been the default decision-makers for children not only with regard to health care but with regard to other matters, such as religious practice and education. In recent decades, there has been a steady trend away from the view that parents are in authority over their children and toward the view that children are rights-bearers who should be granted greater authority over themselves. The mature minor doctrine refers to the decision to grant mature minors the authority to make decisions traditionally reserved for their parents. This essay (1) documents the trend towards expanding the understanding of some minors as "mature" and hence as having the right and authority to give informed consent, (2) examines the reasons for which some commentators have a special interest in expanding the mature minor doctrine to the research setting and allowing minors to enroll in research without parental permission, and (3) defends the view that the mature minor doctrine, regardless of its application to clinical health care decisions, ought to be set aside in the research setting in favor of greater parental involvement.

  4. Harnessing research to protect Botswana's wildlife | IDRC ...

    International Development Research Centre (IDRC) Digital Library (Canada)

    Wildlife of all kinds freely cross the borders of Angola, Botswana, Namibia, Zambia, and Zimbabwe, but is the research data needed to protect them as mobile? Monica Morrison, a PhD candidate at Stellenbosch University and a 2014 Research Award recipient, sought to find out if the extensive research on this vital ...

  5. Public and Biobank Participant Attitudes toward Genetic Research Participation and Data Sharing

    OpenAIRE

    Lemke, A.A.; Wolf, W.A.; Hebert-Beirne, J.; Smith, M.E.

    2010-01-01

    Research assessing attitudes toward consent processes for high-throughput genomic-wide technologies and widespread sharing of data is limited. In order to develop a better understanding of stakeholder views toward these issues, this cross-sectional study assessed public and biorepository participant attitudes toward research participation and sharing of genetic research data. Forty-nine individuals participated in 6 focus groups; 28 in 3 public focus groups and 21 in 3 NUgene biorepository pa...

  6. Applying Equity Theory to Students' Perceptions of Research Participation Requirements

    Science.gov (United States)

    Miles, Shannon R.; Cromer, Lisa DeMarni; Narayan, Anupama

    2015-01-01

    Human subject pools have been a valuable resource to universities conducting research with student participants. However, the costs and benefits to student participants must be carefully weighed by students, researchers, and institutional review board administrators in order to avoid coercion. Participant perceptions are pivotal in deciding…

  7. Participant views and experiences of participating in HIV research in sub-Saharan Africa: a qualitative systematic review.

    Science.gov (United States)

    Nalubega, Sylivia; Evans, Catrin

    2015-06-12

    Human immunodeficiency virus clinical trials are increasingly being conducted in sub-Saharan Africa. There is a tension between the pressure to increase levels of research participation and the need to ensure informed consent and protection of participants' rights. Researchers need to be aware of the particular ethical issues that underpin Human immunodeficiency virus research conduct in low income settings. This necessitates hearing from those who have participated in research and who have direct experience of the research process. This review aimed to synthesize and present the best available evidence in relation to Human immunodeficiency virus research participation in sub-Saharan Africa, based on the views and experiences of research participants. The review included studies whose participants were current or former adult Human immunodeficiency virus research participants from sub-Saharan African countries. Views, experiences, attitudes, understandings, perceptions and perspectives of Human immunodeficiency virus research participants in sub-Saharan Africa. Types of studies: This review considered studies that focused on qualitative data, including, but not limited to, designs such as phenomenology, ethnography, grounded theory, action research and feminist research. A three-step search strategy was utilized. Seven databases (CINAHL, Ovid MEDLINE (R) 1946, ASSIA, PsychInfo, Web of Science, EMBASE, and African Index Medicus) were searched with no limitation to years of publication, followed by hand searching of reference lists. Only studies published in the English language were considered. Methodological quality was assessed using the Qualitative Assessment and Review Instrument developed by the Joanna Briggs Institute. Qualitative findings were extracted using the Joanna Briggs Institute Qualitative Assessment and Review Instrument. Qualitative research findings were pooled using a pragmatic meta-aggregative approach and the Joanna Briggs Institute Qualitative

  8. Public and biobank participant attitudes toward genetic research participation and data sharing.

    Science.gov (United States)

    Lemke, A A; Wolf, W A; Hebert-Beirne, J; Smith, M E

    2010-01-01

    Research assessing attitudes toward consent processes for high-throughput genomic-wide technologies and widespread sharing of data is limited. In order to develop a better understanding of stakeholder views toward these issues, this cross-sectional study assessed public and biorepository participant attitudes toward research participation and sharing of genetic research data. Forty-nine individuals participated in 6 focus groups; 28 in 3 public focus groups and 21 in 3 NUgene biorepository participant focus groups. In the public focus groups, 75% of participants were women, 75% had some college education or more, 46% were African-American and 29% were Hispanic. In the NUgene focus groups, 67% of participants were women, 95% had some college education or more, and the majority (76%) of participants was Caucasian. Five major themes were identified in the focus group data: (a) a wide spectrum of understanding of genetic research; (b) pros and cons of participation in genetic research; (c) influence of credibility and trust of the research institution; (d) concerns about sharing genetic research data and need for transparency in the Policy for Sharing of Data in National Institutes of Health-Supported or Conducted Genome-Wide Association Studies; (e) a need for more information and education about genetic research. In order to increase public understanding and address potential concerns about genetic research, future efforts should be aimed at involving the public in genetic research policy development and in identifying or developing appropriate educational strategies to meet the public's needs.

  9. Participation in HIV research: the importance of clinic contact factors.

    Science.gov (United States)

    Worthington, Catherine A; Gill, M John

    2008-08-01

    Recruiting minority populations living with HIV to many types of clinic-based HIV research is a concern. This study examined an expanded range of predictors of HIV research participation (clinic contact, clinical, and personal characteristics) to investigate observed ethnocultural differences in HIV research participation. Research participation was defined as participation in any of diagnostic, pathogenesis, drug trial or survey research. Logistic regression modeling was used to predict research participation of 657 eligible patients (93% of the patient population) who began care between January 1997 and the end of September 2003 at a regional outpatient HIV care program in Calgary, Canada. Approximately one third (32%) were non-white, including 18% Aboriginal, 9% black, 4% Asian, and 1% Hispanic individuals. Twenty-nine percent (187/657) of the patients participated in at least one study of any kind. Multivariate analysis indicated that the strongest predictors of any research participation (including diagnostic, pathogenesis, drug trial, or survey studies) are clinical (including nadir CD4 count [odds ratio {OR} = 0.132, p percentage of appointments kept [OR = 1.022, p service use shown by these groups that may influence research participation. To attract under researched populations, attention should shift from the "who" of research participation to the "how" of clinical interactions.

  10. Reactions to Participating in Dating Violence Research: Are Our Questions Distressing Participants?

    Science.gov (United States)

    Shorey, Ryan C.; Cornelius, Tara L.; Bell, Kathryn M.

    2011-01-01

    In recent years, there has been increased research focus on dating violence, producing important information for reducing these violent relationships. Yet Institutional Review Boards (IRBs) are often hesitant to approve research on dating violence, citing emotional distress of participants as a possible risk of participation. However, no known…

  11. Radiation protection at the Cadarache research center

    International Nuclear Information System (INIS)

    Anon.

    2015-01-01

    This article recalls the French law about radiation protection and its evolution due to the implementation of the 2013/59-EURATOM directive that separates the missions of counsel from the more operative missions of the person appointed as 'competent in radiation protection'. The organisation of the radiation protection of the Cadarache research center is presented. The issue of sub-contracting and the respect of an adequate standard of radioprotection is detailed since 2 facilities operated by AREVA are being dismantled on the site. (A.C.)

  12. Radiation Protection Research Needs Workshop: Summary Report

    Energy Technology Data Exchange (ETDEWEB)

    Dewji, Shaheen A. [Oak Ridge National Lab. (ORNL), Oak Ridge, TN (United States); Davis, Jason [Oak Ridge Associated Univ., Oak Ridge, TN (United States); Hertel, Nolan E. [Oak Ridge National Lab. (ORNL), Oak Ridge, TN (United States); Abelquist, Eric [Oak Ridge Associated Univ., Oak Ridge, TN (United States)

    2017-09-01

    In order to protect humans and the environment when using ionizing radiation for the advancement and benefit of society, accurately quantifying radiation and its potential effects remains the driver for ensuring the safety and secure use of nuclear and radiological applications of technology. In the realm of radiation protection and its various applications with the nuclear fuel cycle, (nuclear) medicine, emergency response, national defense, and space exploration, the scientific and research needs to support state and federal radiation protection needs in the United States in each of these areas are still deficient.

  13. Participation of workers in radiation protection training and information

    International Nuclear Information System (INIS)

    Zerbib, J.C.

    1989-01-01

    The information and training of workers in radiation protection should be given priority as a means of preventing the hazards of ionizing radiation. In view of the importance of the human factor in accident prevention, it would be inconsistent not to place more emphasis on the training of workers exposed at work. Training staff should not only have technical knowledge in the field of radiation protection, but should also be properly trained in how to teach adults. Teaching tools should be developed at Community level to make the job of trainers, occupational physicians and radiation protection experts easier. Regularly updated documents should supply the basic information for radiation protection, and not neglect areas of uncertainty, or problems which the experts are still debating. These documents must include the special information referred to in the Directive of 15 July 1980, in particular: . the reasons for limiting the dose for women of child-bearing age and the nature and level of the risks for the embryo and foetus, according to the dose received; . the potential hazards of exceptional exposure. . The information and training of workers should help to improve understanding of occupational risks and not serve as a vehicle for propaganda on the harmlessness of nuclear power. In addition, they should openly recognize the nuclear risks including the difficult problem of low doses, but should not confuse the issue with ambiguous statistics

  14. Older adolescents' views regarding participation in Facebook research.

    Science.gov (United States)

    Moreno, Megan A; Grant, Alison; Kacvinsky, Lauren; Moreno, Peter; Fleming, Michael

    2012-11-01

    Facebook continues to grow in popularity among adolescents as well as adolescent researchers. Guidance on conducting research using Facebook with appropriate attention to privacy and ethics is scarce. To inform such research efforts, the purpose of this study was to determine older adolescents' responses after learning that they were participants in a research study that involved identification of participants using Facebook. Public Facebook profiles of older adolescents aged 18-19 years from a large state university were examined. Profile owners were then interviewed. During the interview, participants were informed that they were identified by examining publicly available Facebook profiles. Participants were asked to discuss their views on this research method. A total of 132 participants completed the interview (70% response rate); the average age was 18.4 years (SD = .5); and our sample included 64 male participants (48.5%). Participant responses included endorsement (19.7%), fine (36.4%), neutral (28.8%), uneasy (9.1%), and concerned (6.1%). Among participants who were uneasy or concerned, the majority voiced confusion regarding their current profile security settings (p = .00). The majority of adolescent participants viewed the use of Facebook for research positively. These findings are consistent with the approach taken by many U.S. courts. Researchers may consider these findings when developing research protocols involving Facebook. Copyright © 2012 Society for Adolescent Health and Medicine. Published by Elsevier Inc. All rights reserved.

  15. Advancing public participation in scientific research: A framework for leveraging public participation in environmental health and emergency response research

    Science.gov (United States)

    This research paper uses case analysis methods to understand why participants engage in this innovative approach public participation in scientific research, and what they hope that will mean for their community. The research questions that guide this analysis are: 1) what factor...

  16. Biomedical databases: protecting privacy and promoting research.

    Science.gov (United States)

    Wylie, Jean E; Mineau, Geraldine P

    2003-03-01

    When combined with medical information, large electronic databases of information that identify individuals provide superlative resources for genetic, epidemiology and other biomedical research. Such research resources increasingly need to balance the protection of privacy and confidentiality with the promotion of research. Models that do not allow the use of such individual-identifying information constrain research; models that involve commercial interests raise concerns about what type of access is acceptable. Researchers, individuals representing the public interest and those developing regulatory guidelines must be involved in an ongoing dialogue to identify practical models.

  17. Nurses as participants in research: an evaluation of recruitment techniques.

    Science.gov (United States)

    Luck, Lauretta; Chok, Harrison Ng; Wilkes, Lesley

    2017-09-19

    Recruitment and retention of participants, as well as response rates, can be challenging in nursing research. This can be because of the questions asked; the choice of methodology; the methods used to collect data; the characteristics of potential participants; the sample size required; and the duration of the study. Additionally, conducting research with nurses as participants presents several issues for them, including the time needed to participate in the research, the competing commitments for clinical practice, the political and environmental climate, and recruitment itself. To report on research studies conducted by the authors at a tertiary teaching hospital, to show the lessons learned when recruiting nurses to participate in nursing research. The authors discuss factors that supported recruitment of nurses in these studies, including the use of the personal touch and multiple recruitment strategies in a single study. Videos and photography facilitate interdisciplinary research and can be a valuable means of non-verbal data collection, especially with participants affected by disabilities, and can support research methods, such as the use of questionnaires. Recruiting nurses for research can be challenging. We suggest that researchers consider using more than one recruitment strategy when recruiting nurse participants. Recruitment is more successful if researchers align the aim(s) of the research with nurse's concerns and contexts. ©2012 RCN Publishing Company Ltd. All rights reserved. Not to be copied, transmitted or recorded in any way, in whole or part, without prior permission of the publishers.

  18. ParticipACTION: Overview and introduction of baseline research on the "new" ParticipACTION

    Directory of Open Access Journals (Sweden)

    Craig Cora L

    2009-12-01

    Full Text Available Abstract Background This paper provides a brief overview of the Canadian physical activity communications and social marketing organization "ParticipACTION"; introduces the "new" ParticipACTION; describes the research process leading to the collection of baseline data on the new ParticipACTION; and outlines the accompanying series of papers in the supplement presenting the detailed baseline data. Methods Information on ParticipACTION was gathered from close personal involvement with the organization, from interviews and meetings with key leaders of the organization, from published literature and from ParticipACTION archives. In 2001, after nearly 30 years of operation, ParticipACTION ceased operations because of inadequate funding. In February 2007 the organization was officially resurrected and the launch of the first mass media campaign of the "new" ParticipACTION occurred in October 2007. The six-year absence of ParticipACTION, or any equivalent substitute, provided a unique opportunity to examine the impact of a national physical activity social marketing organization on important individual and organizational level indicators of success. A rapid response research team was established in January 2007 to exploit this natural intervention research opportunity. Results The research team was successful in obtaining funding through the new Canadian Institutes of Health Research Intervention Research (Healthy Living and Chronic Disease Prevention Funding Program. Data were collected on individuals and organizations prior to the complete implementation of the first mass media campaign of the new ParticipACTION. Conclusion Rapid response research and funding mechanisms facilitated the collection of baseline information on the new ParticipACTION. These data will allow for comprehensive assessments of future initiatives of ParticipACTION.

  19. Older adolescents’ views regarding participation in Facebook research

    Science.gov (United States)

    Moreno, Megan A; Grant, Alison; Kacvinsky, Lauren; Moreno, Peter; Fleming, Michael

    2012-01-01

    Purpose Facebook continues to grow in popularity among adolescents as well as adolescent researchers. Guidance on conducting this research with appropriate attention to privacy and ethics is scarce. To inform such research efforts, the purpose of this study was to determine older adolescents’ responses after learning that they were participants in a research study that involved identification of participants using Facebook. Methods Public Facebook profiles of older adolescents age 18 to 19 years from a large state university were examined. Profile owners were then interviewed. During the interview participants were informed that they were identified by examining publicly available Facebook profiles. Participants were asked to discuss their views on this research method. Results A total of 132 participants completed the interview (70% response rate), the average age was 18.4 years (SD=0.5) and our sample included 64 males (48.5%). Participant responses included: endorsement (19.7%), fine (36.4%), neutral (28.8%), uneasy (9.1%) and concerned (6.1%). Among participants who were uneasy or concerned, the majority voiced confusion regarding their current profile security settings (p=0.00). Conclusion The majority of adolescent participants viewed the use of Facebook for research positively. These findings are consistent with the approach taken by many US courts. Researchers may consider these findings when developing research protocols involving Facebook. PMID:23084164

  20. Encouraging Volunteer Participation in Health Research: The Role ...

    African Journals Online (AJOL)

    Health research mainly relies on volunteers to generate data. Volunteer participants not only help provide necessary information to solve problems but also contribute to free participation which in turn helps the research wheel to continue. People mainly contribute to different nonprofit organizations by giving money for ...

  1. Emotion displays and participation in a research workshop

    DEFF Research Database (Denmark)

    Steensig, Jakob

    2013-01-01

    . The researchers were supposed to make observations and, simultaneously, build the same structure with the toys as they saw on the video. Research in the field of participatory innovation has suggested that the use of objects may facilitate emotional reactions and that these may enhance participation...... emotions and surprise, in order to see how this affects participation. The analyses confirm that objects provoke emotional reactions, but that this does not necessarily lead to enhanced participation or joint sense making....

  2. 76 FR 54408 - Human Subjects Research Protections: Enhancing Protections for Research Subjects and Reducing...

    Science.gov (United States)

    2011-09-01

    ... and Drug Administration 21 CFR Parts 50 and 56 Human Subjects Research Protections: Enhancing Protections for Research Subjects and Reducing Burden, Delay, and Ambiguity for Investigators; Extension of... Secretary of the Department of Health and Human Services (HHS) in coordination with the Office of Science...

  3. Motivational factors for participation in biomedical research: evidence from a qualitative study of biomedical research participation in Blantyre District, Malawi.

    Science.gov (United States)

    Mfutso-Bengo, Joseph; Manda-Taylor, Lucinda; Masiye, Francis

    2015-02-01

    Obtaining effective informed consent from research participants is a prerequisite to the conduct of an ethically sound research. Yet it is believed that obtaining quality informed consent is generally difficult in settings with low socioeconomic status. This is so because of the alleged undue inducements and therapeutic misconception among participants. However, there is a dearth of data on factors that motivate research participants to take part in research. Hence, this study was aimed at filling this gap in the Malawian context. We conducted 18 focus group discussions with community members in urban and rural communities of Blantyre in Malawi. Most participants reported that they accepted the invitation to participate in research because of better quality treatment during study also known as ancillary care, monetary and material incentives given to participants, and thorough medical diagnosis. © The Author(s) 2014.

  4. Human subjects research handbook: Protecting human research subjects. Second edition

    Energy Technology Data Exchange (ETDEWEB)

    NONE

    1996-01-30

    This handbook serves as a guide to understanding and implementing the Federal regulations and US DOE Orders established to protect human research subjects. Material in this handbook is directed towards new and continuing institutional review board (IRB) members, researchers, institutional administrators, DOE officials, and others who may be involved or interested in human subjects research. It offers comprehensive overview of the various requirements, procedures, and issues relating to human subject research today.

  5. Research priorities for occupational radiation protection

    International Nuclear Information System (INIS)

    1994-02-01

    The Subpanel on Occupational Radiation Protection Research concludes that the most urgently needed research is that leading to the resolution of the potential effects of low-level ionizing radiation. This is the primary driving force in setting appropriate radiation protection standards and in directing the emphasis of radiation protection efforts. Much has already been done in collecting data that represents a compendium of knowledge that should be fully reviewed and understood. It is imperative that health physics researchers more effectively use that data and apply the findings to enhance understanding of the potential health effects of low-level ionizing radiation and improve the risk estimates upon which current occupational radiation protection procedures and requirements depend. Research must be focused to best serve needs in the immediate years ahead. Only then will we get the most out of what is accomplished. Beyond the above fundamental need, a number of applied research areas also have been identified as national priority issues. If effective governmental focus is achieved on several of the most important national priority issues, important occupational radiation protection research will be enhanced, more effectively coordinated, and more quickly applied to the work environment. Response in the near term will be enhanced and costs will be reduced by: developing microprocessor-aided open-quotes smartclose quotes instruments to simplify the use and processing of radiation data; developing more sensitive, energy-independent, and tissue-equivalent dosimeters to more accurately quantify personnel dose; and developing an improved risk assessment technology base. This can lead to savings of millions of dollars in current efforts needed to ensure personnel safety and to meet new, more stringent occupational guidelines

  6. Perceived barriers to and drivers of community participation in protected-area governance.

    Science.gov (United States)

    Ward, Caroline; Holmes, George; Stringer, Lindsay

    2018-04-01

    Protected areas (PAs) are a frequently used conservation strategy, yet their socioeconomic impacts on local communities remain contentious. A shift toward increased participation by local communities in PA governance seeks to deliver benefits for human well-being and biodiversity. Although participation is considered critical to the success of PAs, few researchers have investigated individuals' decisions to participate and what this means for how local people experience the costs and benefits of conservation. We explored who participates in PA governance associations and why; the perceived benefits and costs to participation; and how costs and benefits are distributed within and between communities. Methods included 3 focus groups, 37 interviews, and 217 questionnaire surveys conducted in 3 communities and other stakeholders (e.g., employees of a nongovernmental organization and government officials) in PA governance in Madagascar. Our study design was grounded in the theory of planned behavior (TPB), the most commonly applied behavior model in social psychology. Participation in PA governance was limited by miscommunication and lack of knowledge about who could get involved and how. Respondents perceived limited benefits and high costs and uneven distribution of these within and between communities. Men, poorer households, and people in remote villages reported the highest costs. Our findings illustrate challenges related to comanagement of PAs: understanding the heterogeneous nature of communities; ensuring all households are represented in governance participation; understanding differences in the meaning of forest protection; and targeting interventions to reach households most in need to avoid elite capture. © 2017 The Authors. Conservation Biology published by Wiley Periodicals, Inc. on behalf of Society for Conservation Biology.

  7. Communication of Biobanks' Research Results : What Do (Potential) Participants Want?

    NARCIS (Netherlands)

    Meulenkamp, Tineke M.; Gevers, Sjef K.; Bovenberg, Jasper A.; Koppelman, Gerard H.; Vlieg, Astrid van Hylckama; Smets, Ellen M. A.

    2010-01-01

    The aim of this study was to investigate (potential) research participants' (a) information preferences with regard to receiving biobanks' genetic research results, and (b) attitudes towards the duties of researchers to communicate research results. A total group of 1,678 was analyzed, consisting of

  8. Communication of Biobanks' Research Results: What Do (Potential) Participants Want?

    NARCIS (Netherlands)

    Meulenkamp, Tineke M.; Gevers, Sjef K.; Bovenberg, Jasper A.; Koppelman, Gerard H.; van Hylckama Vlieg, Astrid; Smets, Ellen M. A.

    2010-01-01

    The aim of this study was to investigate (potential) research participants' (a) information preferences with regard to receiving biobanks' genetic research results, and (b) attitudes towards the duties of researchers to communicate research results. A total group of 1,678 was analyzed, consisting of

  9. Communication of biobanks’ research results: what do (potential) participants want?

    NARCIS (Netherlands)

    Meulenkamp, T.M.; Gevers, S.K.; Bovenberg, J.A.; Koppelman, G.H.; Hylckama Vlieg, A. van; Smets, E.M.A.

    2010-01-01

    The aim of this study was to investigate (potential) research participants' (a) information preferences with regard to receiving biobanks' genetic research results, and (b) attitudes towards the duties of researchers to communicate research results. A total group of 1,678 was analyzed, consisting of

  10. Leaving the Nest: Evaluating the First National Flight of the Online Ethics Course CHRPP (Course of Human Participant Protection)

    Science.gov (United States)

    Stockley, Denise; Balkwill, Laura-Lee; Hoessler, Carolyn

    2016-01-01

    In 2008, Queen's University launched an online tutorial called CHRPP, the Course in Human Research Participant Protection, and published a paper about its purpose, design, and usability in Balkwill, Stevenson, Stockley, and Marlin (2009). CHRPP was originally created to raise awareness among research students about the federal policy regarding…

  11. Retention of minority participants in clinical research studies.

    Science.gov (United States)

    Keller, Colleen S; Gonzales, Adelita; Fleuriet, K Jill

    2005-04-01

    Recruitment of minority participants for clinical research studies has been the topic of several analytical works. Yet retention of participants, most notably minority and underserved populations, is less reported and understood, even though these populations have elevated health risks. This article describes two related, intervention-based formative research projects in which researchers used treatment theory to address issues of recruitment and retention of minority women participants in an exercise program to reduce obesity. Treatment theory incorporates a model of health promotion that allows investigators to identify and control sources of extraneous variables. The authors' research demonstrates that treatment theory can improve retention of minority women participants by considering critical inputs, mediating processes, and substantive participant characteristics in intervention design.

  12. Influence of ethical safeguards on research participation: comparison of perspectives of people with schizophrenia and psychiatrists.

    Science.gov (United States)

    Roberts, Laura W; Hammond, Katherine A Green; Warner, Teddy D; Lewis, Rae

    2004-12-01

    Several safeguards have been developed to protect research volunteers, but little is known about how the people involved in this research-the stakeholders-view these efforts to assure participant rights and well-being. The authors' goal was to examine these perspectives. As part of a larger study, 60 people with schizophrenia and 69 psychiatrists rated the protectiveness and influence on patients' willingness to participate in research of five safeguards: informed consent, alternative decision makers, institutional review boards, data safety monitoring boards, and confidentiality measures. All safeguards were perceived by both the participants with schizophrenia and by the psychiatrists as protective: on a scale of 1-5 on which 1=not protective at all and 5=very much protects, the mean scores ranged from 3.54 to 4.07. Four of the five safeguards were perceived by both the people with schizophrenia and by the psychiatrists as positively influencing patients' participation decisions. On a scale of 1-5 on which 1=much less willing and 5=much more willing to participate, the mean scores for these four safeguards ranged from 3.86 to 4.30. The mean score for the safeguard of an alternative decision maker, however, was 3.09. The ratings of protectiveness made by both the people with schizophrenia and the psychiatrists were correlated with their ratings of patients' willingness to participate in studies. Ethical commitment to research volunteers is expressed in safeguards. These efforts appear to be viewed positively by key stakeholders and may influence research participation decision making.

  13. Research participation registers can increase opportunities for patients and the public to participate in health services research.

    Science.gov (United States)

    Leach, Verity; Redwood, Sabi; Lasseter, Gemma; Walther, Axel; Reid, Colette; Blazeby, Jane; Martin, Richard; Donovan, Jenny

    2016-07-01

    Members of the public and patients repeatedly indicate their willingness to take part in research, but current United Kingdom research governance involves complex rules about gaining consent. Research participation registers that seek consent from participants to be approached about future studies have several potential benefits, including: increased research participation across clinical and healthy populations; simplified recruitment to health care research; support for people's autonomy in decision making; and improved efficiency and generalizability of research. These potential benefits have to be balanced against ethical and governance considerations. With appropriate processes in place, seeking prospective consent from patients and members of the public to be approached about future studies could potentially increase public participation in health research without compromising informed consent and other ethical principles. © The Author(s) 2016.

  14. Understanding participation by African Americans in cancer genetics research.

    Science.gov (United States)

    McDonald, Jasmine A; Barg, Frances K; Weathers, Benita; Guerra, Carmen E; Troxel, Andrea B; Domchek, Susan; Bowen, Deborah; Shea, Judy A; Halbert, Chanita Hughes

    2012-01-01

    Understanding genetic factors that contribute to racial differences in cancer outcomes may reduce racial disparities in cancer morbidity and mortality. Achieving this goal will be limited by low rates of African American participation in cancer genetics research. We conducted a qualitative study with African American adults (n = 91) to understand attitudes about participating in cancer genetics research and to identify factors that are considered when making a decision about participating in this type of research. Participants would consider the potential benefits to themselves, family members, and their community when making a decision to participate in cancer genetics research. However, concerns about exploitation, distrust of researchers, and investigators' motives were also important to participation decisions. Individuals would also consider who has access to their personal information and what would happen to these data. Side effects, logistical issues, and the potential to gain knowledge about health issues were also described as important factors in decision making. African Americans may consider a number of ethical, legal, and social issues when making a decision to participate in cancer genetics research. These issues should be addressed as part of recruitment efforts.

  15. Research directions in plant protection chemistry

    Directory of Open Access Journals (Sweden)

    Andras Szekacs

    2017-09-01

    Full Text Available This Opinion paper briefly summarizes the views of the authors on the directions of research in the area of plant protection chemistry. We believe these directions need to focus on (1 the discovery of new pesticide active ingredients, and (2 the protection of human health and the environment. Research revenues are discussed thematically in topics of target site identification, pesticide discovery, environmental aspects, as well as keeping track with the international trends. The most fundamental approach, target site identification, covers both computer-aided molecular design and research on biochemical mechanisms. The discovery of various classes of pesticides is reviewed including classes that hold promise to date, as well as up-to-date methods of innovation, e.g. utilization of plant metabolomics in identification of novel target sites of biological activity. Environmental and ecological aspects represent a component of increasing importance in pesticide development by emphasizing the need to improve methods of environmental analysis and assess ecotoxicological side-effects, but also set new directions for future research. Last, but not least, pesticide chemistry and biochemistry constitute an integral part in the assessment of related fields of plant protection, e.g. agricultural biotechnology, therefore, issues of pesticide chemistry related to the development and cultivation of genetically modified crops are also discussed.

  16. Sexuality educators: taking a stand by participating in research

    African Journals Online (AJOL)

    Sexuality educators: taking a stand by participating in research ... and Sexually Transmitted Infections (STIs) (United Nations Educational, Scientific, .... assimilates new ideas which could assist in keeping up with what learners need from.

  17. Evaluating a Research Training Programme for People with Intellectual Disabilities Participating in Inclusive Research: The Views of Participants.

    Science.gov (United States)

    Fullana, Judit; Pallisera, Maria; Català, Elena; Puyalto, Carolina

    2017-07-01

    This article presents the results of evaluating a research training programme aimed at developing the skills of people with intellectual disabilities to actively participate in inclusive research. The present authors opted for a responsive approach to evaluation, using a combination of interviews, questionnaires and focus groups to gather information on the views of students, trainers and members of the research team regarding how the programme progressed, the learning achieved and participants' satisfaction with the programme. The evaluation showed that most of the participants were satisfied with the programme and provided guidelines for planning contents and materials, demonstrating the usefulness of these types of programme in constructing the research group and empowering people with intellectual disabilities to participate in research. The evaluation revealed that the programme had been a positive social experience that fostered interest in lifelong learning for people with intellectual disabilities. © 2016 John Wiley & Sons Ltd.

  18. Research projects in radiobiology and radiation protection

    Energy Technology Data Exchange (ETDEWEB)

    NONE

    1960-04-15

    Of the research projects sponsored by the International Atomic Energy Agency quite a large number are concerned with the biological effects of ionizing radiation. That itself, of course, is a very wide field covering such subjects as the nature and mechanism of radiation damage, genetic mutations, the varying radiosensitivity of different organisms, ways of modifying the natural sensitivity or resistance, and biological and chemical means of protection. In all these branches of enquiry, the Agency has awarded research contracts to scientific institutes or laboratories in different countries

  19. Research projects in radiobiology and radiation protection

    International Nuclear Information System (INIS)

    1960-01-01

    Of the research projects sponsored by the International Atomic Energy Agency quite a large number are concerned with the biological effects of ionizing radiation. That itself, of course, is a very wide field covering such subjects as the nature and mechanism of radiation damage, genetic mutations, the varying radiosensitivity of different organisms, ways of modifying the natural sensitivity or resistance, and biological and chemical means of protection. In all these branches of enquiry, the Agency has awarded research contracts to scientific institutes or laboratories in different countries

  20. Challenges of youth participation in participatory action research

    DEFF Research Database (Denmark)

    Wattar, Laila; Fanous, Sandrine; Berliner, Peter

    2012-01-01

    Paamiut Youth Voice (PYV) is a Participatory Action Research (PAR) project, exploring youth perceptions, experiences, and the promotion of well-being in Paamiut, Greenland. Active youth participation remained a key challenge in the development of the local community through the locally initiated...... community mobilisation programme Paamiut Asasara. The challenges of youth participation in PYV are investigated in order to explore the implications of youth participation in PAR projects. The discussion of challenges is based on a methodological account of experiences from the research process clarifying...

  1. Protection, Participation and Protection through Participation: Young People with Intellectual Disabilities and Decision Making in the Family Context

    Science.gov (United States)

    Saaltink, R.; MacKinnon, G.; Owen, F.; Tardif-Williams, C.

    2012-01-01

    Background: Research suggests that persons with intellectual disabilities (ID) are expected to be more compliant than persons without disabilities and that expectations for compliance begin in childhood. No study, however, seems yet to have included a primary focus on the participatory rights, or rights to express opinions, desires and preferences…

  2. Genuine participation in participant-centred research initiatives: the rhetoric and the potential reality.

    Science.gov (United States)

    Feeney, Oliver; Borry, Pascal; Felzmann, Heike; Galvagni, Lucia; Haukkala, Ari; Loi, Michele; Nordal, Salvör; Rakic, Vojin; Riso, Brígida; Sterckx, Sigrid; Vears, Danya

    2018-04-01

    The introduction of Web 2.0 technology, along with a population increasingly proficient in Information and Communications Technology (ICT), coupled with the rapid advancements in genetic testing methods, has seen an increase in the presence of participant-centred research initiatives. Such initiatives, aided by the centrality of ICT interconnections, and the ethos they propound seem to further embody the ideal of increasing the participatory nature of research, beyond what might be possible in non-ICT contexts alone. However, the majority of such research seems to actualise a much narrower definition of 'participation'-where it is merely the case that such research initiatives have increased contact with participants through ICT but are otherwise non-participatory in any important normative sense. Furthermore, the rhetoric of participant-centred initiatives tends to inflate this minimalist form of participation into something that it is not, i.e. something genuinely participatory, with greater connections with both the ICT-facilitated political contexts and the largely non-ICT participatory initiatives that have expanded in contemporary health and research contexts. In this paper, we highlight that genuine (ICT-based) 'participation' should enable a reasonable minimum threshold of participatory engagement through, at least, three central participatory elements: educative, sense of being involved and degree of control. While we agree with criticisms that, at present, genuine participation seems more rhetoric than reality, we believe that there is clear potential for a greater ICT-facilitated participatory engagement on all three participatory elements. We outline some practical steps such initiatives could take to further develop these elements and thereby their level of ICT-facilitated participatory engagement.

  3. Research and development in radiological protection

    International Nuclear Information System (INIS)

    Butragueno, J. L.; Villota, C.; Gutierrez, C.; Rodriguez, A.

    2004-01-01

    The objective of Radiological Protection is to guarantee that neither people, be they workers or members of the public, or the environment are exposed to radiological risks considered by society to be unacceptable. Among the various resources available to meet this objective is Research and Development (R and D), which is carried out in three areas: I. Radiological protection of persons: (a) knowledge of the biological effects of radiations, in order to determine the relationship that exists between radiation exposure dose and its effects on health; (b) the development of new personal dosimetry techniques in order to adapt to new situations, instrumental techniques and information management technologies allowing for better assessment of exposure dose; and (c) development of the principle of radiological protection optimisation (ALARA), which has been set up internationally as the fundamental principle on which radiological protection interventions are based. II. Assessment of environmental radiological impact, the objective of which is to assess the nature and magnitude of situations of exposure to ionising radiations as a result of the controlled or uncontrolled release of radioactive material to the environment, and III.Reduction of the radiological impact of radioactive wastes, the objective of which is to develop radioactive material and waste management techniques suitable for each situation, in order to reduce the risks associated with their definitive management or their release to the environment. Briefly described below are the strategic lines of R and D of the CSN, the Electricity Industry, Ciemat and Enresa in the aforementioned areas. (Author)

  4. Participants' safety versus confidentiality: A case study of HIV research.

    Science.gov (United States)

    Leyva-Moral, Juan Manuel; Feijoo-Cid, Maria

    2017-05-01

    Background When conducting qualitative research, participants usually share lots of personal and private information with the researcher. As researchers, we must preserve participants' identity and confidentiality of the data. Objective To critically analyze an ethical conflict encountered regarding confidentiality when doing qualitative research. Research design Case study. Findings and discussion one of the participants in a study aiming to explain the meaning of living with HIV verbalized his imminent intention to commit suicide because of stigma of other social problems arising from living with HIV. Given the life-threatening situation, the commitment related to not disclosing the participant's identity and/or the content of the interview had to be broken. To avoid or prevent suicide, the therapist in charge of the case was properly informed about the participant's intentions. One important question arises from this case: was it ethically appropriate to break the confidentiality commitment? Conclusion confidentiality could be broken if a life-threatening event is identified during data collection and participants must know that. This has to be clearly stated in the informed consent form.

  5. From Research to Policy: Roma Participation through Communicative Organization

    Science.gov (United States)

    Munte, Ariadna; Serradell, Olga; Sorde, Teresa

    2011-01-01

    For centuries, Roma people's social exclusion has been reinforced through research that has legitimized stereotypes rather than helping to overcome them. This has led Roma people to refuse to participate in the kind of research that has contributed to discrimination against them. We describe how the critical communicative methodology, used in the…

  6. Interviewing Objects: Including Educational Technologies as Qualitative Research Participants

    Science.gov (United States)

    Adams, Catherine A.; Thompson, Terrie Lynn

    2011-01-01

    This article argues the importance of including significant technologies-in-use as key qualitative research participants when studying today's digitally enhanced learning environments. We gather a set of eight heuristics to assist qualitative researchers in "interviewing" technologies-in-use (or other relevant objects), drawing on concrete…

  7. Croatian Participation at National Symposia and International Congresses on Radiation Protection 1992-2002

    International Nuclear Information System (INIS)

    Krajcar Bronic, I.; Ranogajec-Komor, M

    2003-01-01

    Croatian Radiation Protection Association (CRPA) was formed as an independent association in 1991, and since 1992 it is a member of the International Radiation Protection Association (IRPA). CRPA organises regular national symposia with international participation, and takes part in organisation of regional IRPA congresses. The members of CRPA take part also in international and European congresses. In this paper we analyse the participation of Croatian authors in national symposia and international congresses in the period from 1992 to 2002. The number of papers in proceedings of the national symposia is rather constant (about 60), while at the First symposium in 1992 it was slightly higher (68). The fraction of papers by Croatian authors was also the highest at the First Symposium (∼ 90%), while at the following symposia it varied between 70% and 80%. Although the analysed period is rather short, one can see slight changes in the research topics. Radioecology, including radon and related topics, was the most frequent research area (36% of all papers) at the national CRPA symposia 1992-1998, followed by the biological effects of radiation and radiation protection in medicine (24%), dosimetry, methods and instrumentation (21%), general topics (11%) and radioactive waste (7%). The distribution of topics at the Fifth symposium is: 27% radioecology and radon, 30% biological and medical topics, as well as professional and public exposure, 24% dosimetry, 14% general topics and 5% non-ionising radiations. In this Symposium we have separate sections for non-ionising radiations and public exposure, although several papers on these subjects were presented already at the previous symposia. (author)

  8. Demand artifact: objectively detecting biased participants in advertising research.

    Science.gov (United States)

    Miller, Felicia; Schertzer, Susan

    2014-12-01

    Detecting and reducing the effect of biased participants continues to be an important task for researchers. However, the lack of objective measures to assess demand artifact has made it difficult to effectively address this issue. This paper reports two experiments that apply a theory-based post-experimental inquiry that can systematically identify biased participants in consumer research. The results demonstrate how easily and effectively researchers can incorporate this tool into experimental studies of all types and reduce the likelihood of systematic error.

  9. Factors Affecting Women's Autonomous Decision Making In Research Participation Amongst Yoruba Women Of Western Nigeria.

    Science.gov (United States)

    Princewill, Chitu Womehoma; Jegede, Ayodele S; Nordström, Karin; Lanre-Abass, Bolatito; Elger, Bernice Simone

    2017-04-01

    Research is a global enterprise requiring participation of both genders for generalizable knowledge; advancement of science and evidence based medical treatment. Participation of women in research is necessary to reduce the current bias that most empirical evidence is obtained from studies with men to inform health care and related policy interventions. Various factors are assumed to limit autonomy amongst the Yoruba women of western Nigeria. This paper seeks to explore the experience and understanding of autonomy by the Yoruba women in relation to research participation. Focus is on factors that affect women's autonomous decision making in research participation. An exploratory qualitative approach comprising four focus group discussions, 42 in-depth interviews and 14 key informant interviews was used. The study permits a significant amount of triangulation, as opinions of husbands and religious leaders are also explored. Interviews and discussions were audiotaped and transcribed verbatim. Content analysis was employed for data analysis. Findings show that concepts of autonomy varied amongst the Yoruba women. Patriarchy, religion and culture are conceived to have negative impact on the autonomy of women in respect to research participation. Among the important findings are: 1) male dominance is strongly emphasized by religious leaders who should teach equality, 2) while men feel that by making decisions for women, they are protecting them, the women on the other hand see this protection as a way of limiting their autonomy. We recommend further studies to develop culturally appropriate and workable recruitment methods to increase women's participation in research. © 2016 John Wiley & Sons Ltd.

  10. Cross-cultural perspectives on research participation and informed consent.

    Science.gov (United States)

    Barata, Paula C; Gucciardi, Enza; Ahmad, Farah; Stewart, Donna E

    2006-01-01

    This study examined Portuguese Canadian and Caribbean Canadian immigrants' perceptions of health research and informed consent procedures. Six focus groups (three in each cultural group) involving 42 participants and two individual interviews were conducted. The focus groups began with a general question about health research. This was followed by three short role-plays between the moderator and the assistant. The role-plays involved a fictional health research study in which a patient is approached for recruitment, is read a consent form, and is asked to sign. The role-plays stopped at key moments at which time focus group participants were asked questions about their understanding and their perceptions. Focus group transcripts were coded in QSR NUDIST software using open coding and then compared across cultural groups. Six overriding themes emerged: two were common in both the Portuguese and Caribbean transcripts, one emphasized the importance of trust and mistrust, and the other highlighted the need and desire for more information about health research. However, these themes were expressed somewhat differently in the two groups. In addition, there were four overriding themes that were specific to only one cultural group. In the Portuguese groups, there was an overwhelming positive regard for the research process and an emphasis on verbal as opposed to written information. The Caribbean participants qualified their participation in research studies and repeatedly raised images of invasive research.

  11. Physician participation in clinical research and trials: issues and approaches

    Directory of Open Access Journals (Sweden)

    Sami F Shaban

    2011-03-01

    Full Text Available Sayeeda Rahman1, Md Anwarul Azim Majumder1, Sami F Shaban2, Nuzhat Rahman3, Moslehuddin Ahmed4, Khalid Bin Abdulrahman5, Urban JA D’Souza61Department of Clinical Sciences, School of Life Sciences, University of Bradford, West Yorkshire, Bradford, UK; 2Department of Medical Education, Faculty of Medicine and Health Sciences, UAE University, Al-Ain, United Arab Emirates; 3Department of Nutrition Sciences, University of Alabama at Birmingham, Birmingham, AL, USA; 4Department of Community Medicine, Uttara Adhunik Medical College, Dhaka, Bangladesh; 5Department of Family Medicine and Medical Education, College of Medicine, Al-Imam University, Riyadh, Saudi Arabia; 6Department of Post Graduate Studies, School of Medicine, University Malaysia Sabah, Kota Kinabalu, Sabah, MalaysiaAbstract: The rapid development of new drugs, therapies, and devices has created a dramatic increase in the number of clinical research studies that highlights the need for greater participation in research by physicians as well as patients. Furthermore, the potential of clinical research is unlikely to be reached without greater participation of physicians in research. Physicians face a variety of barriers with regard to participation in clinical research. These barriers are system- or organization-related as well as research- and physician-related. To encourage physician participation, appropriate organizational and operational infrastructures are needed in health care institutes to support research planning and management. All physicians should receive education and training in the fundamentals of research design and methodology, which need to be incorporated into undergraduate medical education and postgraduate training curricula and then reinforced through continuing medical education. Medical schools need to analyze current practices of teaching–learning and research, and reflect upon possible changes needed to develop a ‘student-focused teaching–learning and

  12. Relative solidarity: Conceptualising communal participation in genomic research among potential research participants in a developing Sub-Saharan African setting.

    Science.gov (United States)

    Ogunrin, Olubunmi; Woolfall, Kerry; Gabbay, Mark; Frith, Lucy

    2018-01-01

    As genomic research gathers momentum in sub-Saharan Africa, it has become increasingly important to understand the reasons why individuals wish to participate in this kind of medical research. Against the background of communitarianism conceived as typical of African communities, it is often suggested that individuals consent to participate on the grounds of solidarity and to further the common good. In this paper, we seek to explore this contention by presenting data from focus groups with potential research participants about what would influence their decisions to participate in genomic research. These focus groups were conducted as part of a larger qualitative study with a purposively selected group of participants from a community situated in south west Nigeria. We conducted fifteen focus group sessions comprising 50 participants organized by age and sex, namely: 1) adult (>30 years) males, 2) adult females, 3) youth (18-30 years) males, and 4) youth females. A mixed age-group was conducted to probe different views between the age groups. There was discordance and clear division between the adults and youths regarding the decision to participate in genomic research based on commitment to communal values. Adults based their decision to participate on altruism and furthering the common good while youths based their decisions on personal benefits and preferences and also took into account the views and welfare of family members and neighbours. This discordance suggests a 'generational shift' and we advance a model of 'relative solidarity' among the youths, which is different from the communal solidarity model typical of African communitarianism. Our findings suggest the need for a closer look at strategies for implementation of community engagement and informed consent in genomic research in this region, and we recommend further studies to explore this emerging trend.

  13. Radiation protection personnel training in Research Reactors

    International Nuclear Information System (INIS)

    Fernandez, Carlos Dario; Lorenzo, Nestor Pedro de

    1996-01-01

    The RA-6 research reactor is considering the main laboratory in the training of different groups related with radiological protection. The methodology applied to several courses over 15 years of experience is shown in this work. The reactor is also involved in the construction, design, start-up and sell of different installation outside Argentina for this reason several theoretical and practical courses had been developed. The acquired experience obtained is shown in this paper and the main purpose is to show the requirements to be taken into account for every group (subjects, goals, on-job training, etc) (author)

  14. Recruiting Transcultural Qualitative Research Participants: A Conceptual Model

    Directory of Open Access Journals (Sweden)

    Phyllis Eide

    2005-06-01

    Full Text Available Working with diverse populations poses many challenges to the qualitative researcher who is a member of the dominant culture. Traditional methods of recruitment and selection (such as flyers and advertisements are often unproductive, leading to missed contributions from potential participants who were not recruited and researcher frustration. In this article, the authors explore recruitment issues related to the concept of personal knowing based on experiences with Aboriginal Hawai'ian and Micronesian populations, wherein knowing and being known are crucial to successful recruitment of participants. They present a conceptual model that incorporates key concepts of knowing the other, cultural context, and trust to guide other qualitative transcultural researchers. They also describe challenges, implications, and concrete suggestions for recruitment of participants.

  15. Participation in protected areas: A social network case study in Catalonia, Spain

    NARCIS (Netherlands)

    Calvet-Mir, L.; Maestre Andrés, S.; Molina, J.L.; van den Bergh, J.C.J.M.

    2015-01-01

    Local participation of stakeholders in governance of protected areas is considered to be important to natural resource management and biodiversity conservation. Social network analysis (SNA) is a useful tool for analysis because it allows the understanding of stakeholders’ relationships,

  16. INJECTION TECHNOLOGY RESEARCH OF THE PROTECTIVE SCREEN

    Directory of Open Access Journals (Sweden)

    MENEJLYUK A. I.

    2016-12-01

    Full Text Available Formulation of the problem. This article contains information about the methods and the planning principles used in experimental research study of the injection technology of impervious screen. Today, there are ways to create impervious screens and curtains solve soil protection issues in the field impermeable layer arrangement at a shallow depth. However, for Ukraine, in the burial sites of radiation and other wastes is urgent issue of protection of underground space in places with deep impermeable layer. Classical methods can not fully solve such problems. To solve them, you need to develop innovative technology to create such a screen, which will lie authentic sole object to be protected, at the project depth. For the experiments, it is necessary to choose the most important indicator, and technological factors affecting it. This is due to the fact that the proposed technology provides for lesser known technical solutions, the use of which should ultimately result in impervious screens with desired properties. Goal. The aim of this study is the selection of technological parameters of injection, design of experiments and the selection of indicators characterizing the efficient operation of the screen. Such constructs must first have almost zero permeability. In this paper, it was of interest to study the influence of process parameters on the filtration rate of the protective screen. Conclusion. As a result of the design of experiments, the basic technological factors that have a significant effect on the studied parameters. varying levels of these factors are also identified, which in turn makes it possible to determine the optimum process parameters creating a screen that meets all the desired properties and characteristics. Based on a series of experiments it is possible to obtain optimal formulations for different types of soils.

  17. Biological research for the radiation protection

    International Nuclear Information System (INIS)

    Kim, In Gyu; Kim, Chan Kug; Shim, Hae Won; Jung, Il Lae; Byun, Hee Sun; Moon, Myung Sook; Cho, Hye Jeong; Kim, Jin Sik

    2003-04-01

    The work scope of 'Biological Research for the Radiation Protection' had contained the research about polyamine effect on cell death triggered ionizing radiation, H 2 O 2 and toxic agents. In this paper, to elucidate the role of polyamines as mediator in lysosomal damage and stress(H 2 O 2 )- induced apoptosis, we utilized α-DiFluoroMethylOrnithine (DFMO), which inhibited ornithine decarboxylase and depleted intracellular putrescine, and investigated the effects of polyamine on the apoptosis caused by H 2 O 2 , ionizing radiation and paraquat. We also showed that MGBG, inhibitor of polyamine biosynthesis, treatment affected intracellular redox steady states, intracellular ROS levels and protein oxidation. Thereafter we also investigated whether MGBG may enhance the cytotoxic efficacy of tumor cells caused by ionizing radiation or H 2 O 2 because such compounds are able to potentiate the cell-killing effects. In addition, ceruloplasmin and thioredoxin, possible antioxidant proteins, were shown to have protective effect on radiation- or H 2 O 2 (or chemicals)-induced macromolecular damage or cell death

  18. Schools as Sites for Recruiting Participants and Implementing Research.

    Science.gov (United States)

    Bartlett, Robin; Wright, Tiffany; Olarinde, Tia; Holmes, Tara; Beamon, Emily R; Wallace, Debra

    2017-01-01

    Schools can be a valuable resource for recruitment of participants for research involving children, adolescents, and parents. Awareness of the benefits and challenges of working with schools can assist researchers in developing effective school partnerships. This article discusses the advantages of conducting research within the school system as well as the challenges that may also arise. Such challenges include developing key contacts, building relationships, logistical arrangements, and facilitating trust in the research topic and team. Suggestions for strategies to forge successful collaborative relationships with schools are provided.

  19. The disclosure of diagnosis codes can breach research participants' privacy.

    Science.gov (United States)

    Loukides, Grigorios; Denny, Joshua C; Malin, Bradley

    2010-01-01

    De-identified clinical data in standardized form (eg, diagnosis codes), derived from electronic medical records, are increasingly combined with research data (eg, DNA sequences) and disseminated to enable scientific investigations. This study examines whether released data can be linked with identified clinical records that are accessible via various resources to jeopardize patients' anonymity, and the ability of popular privacy protection methodologies to prevent such an attack. The study experimentally evaluates the re-identification risk of a de-identified sample of Vanderbilt's patient records involved in a genome-wide association study. It also measures the level of protection from re-identification, and data utility, provided by suppression and generalization. Privacy protection is quantified using the probability of re-identifying a patient in a larger population through diagnosis codes. Data utility is measured at a dataset level, using the percentage of retained information, as well as its description, and at a patient level, using two metrics based on the difference between the distribution of Internal Classification of Disease (ICD) version 9 codes before and after applying privacy protection. More than 96% of 2800 patients' records are shown to be uniquely identified by their diagnosis codes with respect to a population of 1.2 million patients. Generalization is shown to reduce further the percentage of de-identified records by less than 2%, and over 99% of the three-digit ICD-9 codes need to be suppressed to prevent re-identification. Popular privacy protection methods are inadequate to deliver a sufficiently protected and useful result when sharing data derived from complex clinical systems. The development of alternative privacy protection models is thus required.

  20. Ethical issues in the qualitative researcher--participant relationship.

    Science.gov (United States)

    Eide, Phyllis; Kahn, David

    2008-03-01

    Qualitative research poses ethical issues and challenges unique to the study of human beings. In developing the interpersonal relationship that is critical to qualitative research, investigator and participant engage in a dialogic process that often evokes stories and memories that are remembered and reconstituted in ways that otherwise would not occur. Ethical issues are raised when this relationship not only provides qualitative research data, but also leads to some degree of therapeutic interaction for the participant. The purpose of this article is to examine some of the controversies inherent in the researcher's dilemma when this occurs, set within the context of a nursing caring theory (Swanson), and the International Council of Nurses Code of ethics for nurses, which provides guidance on global nursing practice.

  1. Vulnerable participants in health research: methodological and ethical challenges

    DEFF Research Database (Denmark)

    Nordentoft, Helle Merete; Kappel, Nanna

    2011-01-01

    , leaving both professionals and researchers in ethical and moral dilemmas. In this article, we specifically focus on the methodological challenges of obtaining informed consent from drug users and terminally ill cancer patients in our PhD research. The question is how to illuminate the needs and problems......Ethical guidelines for conducting research are embedded in the Helsinki Declaration of 1964. We contend that these abstract and intentionally universal guidelines need to be appropriated for social and healthcare research, in which purpose and methods often deviate from medical research....... The guidelines appear to be instrumental and over-simplistic representations of the often ‘messy’ realities surrounding the research process that is often guided by relational and local negotiations of ethical solutions. Vulnerable participants, for instance, challenge both professional and research ethics...

  2. Shedding light on research participation effects in behaviour change trials: a qualitative study examining research participant experiences.

    Science.gov (United States)

    MacNeill, Virginia; Foley, Marian; Quirk, Alan; McCambridge, Jim

    2016-01-29

    The sequence of events in a behaviour change trial involves interactions between research participants and the trial process. Taking part in such a study has the potential to influence the behaviour of the participant, and if it does, this can engender bias in trial outcomes. Since participants' experience has received scant attention, the aim of this study is thus to generate hypotheses about which aspects of the conduct of behaviour change trials might matter most to participants, and thus have potential to alter subsequent behaviours and bias trial outcomes Twenty participants were opportunistically screened for a health compromising behaviour (unhealthy diet, lack of exercise, smoking or alcohol consumption) and recruited if eligible. Semi structured face to face interviews were conducted, after going through the usual processes involved in trial recruitment, baseline assessment and randomisation. Participants were given information on the contents of an intervention or control condition in a behaviour change trial, which was not actually implemented. Three months later they returned to reflect on these experiences and whether they had any effect on their behaviour during the intervening period. Data from the latter interview were analysed thematically using a modified grounded theory approach. The early processes of trial participation raised awareness of unhealthy behaviours, although most reported having had only fleeting intentions to change their behaviour as a result of taking part in this study, in the absence of interventions. However, careful examination of the accounts revealed evidence of subtle research participation effects, which varied according to the health behaviour, and its perceived social acceptability. Participants' relationships with the research study were viewed as somewhat important in stimulating thinking about whether and how to make lifestyle changes. These participants described no dramatic impacts attributable to taking part in

  3. Participant Action Research in Political, Psychological, and Gender Studies

    Directory of Open Access Journals (Sweden)

    Olga Lucia Obando-Salazar

    2006-09-01

    Full Text Available Qualitative methodology is used in social and intervention research because it facilitates a deeper analysis of causal factors and development of alternative solutions to social problems. Based on the findings of three studies in the field of political and gender psychology, this article focuses on Participant Action Research (PAR as a useful qualitative approach to deal with social phenomena, such as racism, violence against women, and the problem of children and youth who have been dislocated as the result of armed conflict and sheltered by the Colombian government's program for persons relocated to civil society. This article is composed of three parts. The first part offers historical and theoretical background to the Action Research (AR paradigm, its validation criteria and their meaning for the development of the Latin American rendering of Participant Action Research (PAR. The second part synthesizes trends in the AR approach in the United States and Germany, discusses feminist research and compares these to trends in PAR in Latin America. The third part is a description of Participant Action Research as an intervention method, including features, models, goals, and concepts. URN: urn:nbn:de:0114-fqs060438

  4. RUPS: Research Utilizing Problem Solving. Administrators Version. Participant Materials.

    Science.gov (United States)

    Jung, Charles; And Others

    These materials are the handouts for school administrators participating in RUPS (Research Utilizing Problem Solving) workshops. The purposes of the workshops are to develop skills for improving schools and to increase teamwork skills. The handouts correspond to the 16 subsets that make up the five-day workshop: (1) orientation; (2) identifying…

  5. Increasing global participation in genetics research through DNA barcoding.

    Science.gov (United States)

    Adamowicz, Sarah J; Steinke, Dirk

    2015-12-01

    DNA barcoding--the sequencing of short, standardized DNA regions for specimen identification and species discovery--has promised to facilitate rapid access to biodiversity knowledge by diverse users. Here, we advance our opinion that increased global participation in genetics research is beneficial, both to scientists and for science, and explore the premise that DNA barcoding can help to democratize participation in genetics research. We examine publication patterns (2003-2014) in the DNA barcoding literature and compare trends with those in the broader, related domain of genomics. While genomics is the older and much larger field, the number of nations contributing to the published literature is similar between disciplines. Meanwhile, DNA barcoding exhibits a higher pace of growth in the number of publications as well as greater evenness among nations in their proportional contribution to total authorships. This exploration revealed DNA barcoding to be a highly international discipline, with growing participation by researchers in especially biodiverse nations. We briefly consider several of the challenges that may hinder further participation in genetics research, including access to training and molecular facilities as well as policy relating to the movement of genetic resources.

  6. Infusing Participants' Voices into Grounded Theory Research: A Poetic Anthology

    Science.gov (United States)

    Kennedy, Brianna L.

    2009-01-01

    This article augments the author's grounded theory study of student and teacher interactions in alternative education classrooms by presenting poetic transcription as a way to portray the essences and experiences of the participants. The author builds on the experimental writing traditions of other researchers to embrace her own experiences as a…

  7. Payment of research participants: current practice and policies of Irish research ethics committees.

    LENUS (Irish Health Repository)

    Roche, Eric

    2013-09-01

    Payment of research participants helps to increase recruitment for research studies, but can pose ethical dilemmas. Research ethics committees (RECs) have a centrally important role in guiding this practice, but standardisation of the ethical approval process in Ireland is lacking.

  8. Organized and Unstructured Activity Participation among Adolescents Involved with Child Protective Services in the United States

    Science.gov (United States)

    Kwak, Yoonyoung; Lu, Ting; Christ, Sharon L.

    2017-01-01

    Background: Many adolescents are referred to Child Protective Services for possible maltreatment every year, but not much is known about their organized and unstructured activity participation. Objective: The purposes of this study are to provide a description of organized and unstructured activity participation for adolescents who were possible…

  9. Self-Injurious Behavior and Functional Analysis: Where Are the Descriptions of Participant Protections?

    Science.gov (United States)

    Weeden, Marc; Mahoney, Amanda; Poling, Alan

    2010-01-01

    This study examined the reporting of participant protections in studies involving functional analysis and self-injurious behavior and published from 1994 through 2008. Results indicated that session termination criteria were rarely reported and other specific participant safeguards were seldom described. The absence of such information in no way…

  10. Why do pregnant women participate in research? A patient participation investigation using Q-Methodology.

    Science.gov (United States)

    Meshaka, Riwa; Jeffares, Stephen; Sadrudin, Farah; Huisman, Nicole; Saravanan, Ponnusamy

    2017-04-01

    Patient participation in study design is paramount to design studies that are acceptable to patients. Despite an increase in research involving pregnant women, relatively little is known about the motivational factors that govern their decision to be involved in a clinical trial, compared to other patient groups. To better understand the viewpoints of pregnant women who take part in clinical trials. We chose to use Q-Methodology, a method of exploring the structure of opinions surrounding a topic. We developed a set of 40 statements that encompassed the reasons why pregnant women might want to take part in research and 30 research participants from the PRiDE study (an observational trial investigating the role of micronutrients in gestational diabetes) were asked to rank them in order of agreement. The finished matrices from each participant were compared and analysed to produce capturing viewpoints. About 30 women aged 19-40 involved in the PRiDE study completed the questionnaire. There were two overarching motivators that emerged: a willingness to help medical research and improve our knowledge of medical science, and having a personal connection to the disease, therefore a potential fear of being affected by it. A third, less significant viewpoint, was that of a lack of inconvenience being a motivating factor. Understanding what motivates pregnant women to decide to take part in a research study is valuable and helps researchers maximize their uptake and retention rates when designing a trial involving pregnant women. © 2016 The Authors. Health Expectations Published by John Wiley & Sons Ltd.

  11. Financial disclosure and clinical research: what is important to participants?

    Science.gov (United States)

    Hutchinson, Anastasia; Rubinfeld, Abe R

    2008-08-18

    To assess what participants in company-sponsored clinical trials wish to know about financial aspects of the study. Cross-sectional questionnaire administered to 324 participants in six clinical trials conducted at the Royal Melbourne Hospital in 1999-2000 and 2006 for non-acute conditions (asthma, chronic obstructive pulmonary disease, osteoporosis, rheumatoid arthritis, diabetes and influenza vaccine efficacy). Participants' desire for information on study funding, investigators' conflicts of interest, and use of accrued funds. 259 participants (80%) completed the survey. Participants wanted to be informed about the identity of the project sponsor (148 participants; 57%), whether the investigators owned shares in the company (105; 41%) or received travel grants (83; 32%), how much funding was accrued at study completion (88; 34%), how accrued funds were used (98; 38%), and who approved their use (91; 35%). After adjusting for year of survey and level of education, younger subjects (aged informed more often than older participants of who sponsored the project (odds ratio [OR], 2.35 [95% CI, 1.21-4.55]; P=0.012), whether the investigators owned shares in the company (OR, 2.41 [95% CI, 1.27-4.60]; P=0.007) and how much funding was available for other uses (OR, 1.79 [95% CI, 0.94-3.41]; P=0.078). While most participants indicated that they would take part in clinical research again regardless of whether they received financial information, providing information on the sponsor, the investigators' financial interest in the company, whether accrual of funds is expected, and how these funds will be spent should satisfy the interests of participants in company-sponsored clinical trials.

  12. Payment of research participants: current practice and policies of Irish research ethics committees.

    Science.gov (United States)

    Roche, Eric; King, Romaine; Mohan, Helen M; Gavin, Blanaid; McNicholas, Fiona

    2013-09-01

    Payment of research participants helps to increase recruitment for research studies, but can pose ethical dilemmas. Research ethics committees (RECs) have a centrally important role in guiding this practice, but standardisation of the ethical approval process in Ireland is lacking. Our aim was to examine REC policies, experiences and concerns with respect to the payment of participants in research projects in Ireland. Postal survey of all RECs in Ireland. Response rate was 62.5% (n=50). 80% of RECs reported not to have any established policy on the payment of research subjects while 20% had refused ethics approval to studies because the investigators proposed to pay research participants. The most commonly cited concerns were the potential for inducement and undermining of voluntary consent. There is considerable variability among RECs on the payment of research participants and a lack of clear consensus guidelines on the subject. The development of standardised guidelines on the payment of research subjects may enhance recruitment of research participants.

  13. Understanding stakeholder participation in research as part of sustainable development.

    Science.gov (United States)

    Bell, Simon; Morse, Stephen; Shah, Rupesh A

    2012-06-30

    Participation is often presented as a 'good' thing and a fairer way to represent views and opinions outside narrow confines of interest and expertise. However, the roots of participatory approaches within research contexts are deep and numerous twists and turns demonstrate a confused and possibly confusing morphology with significant gaps and weaknesses. In this paper 'via the medium' of the POINT (Policy Influence of Indicators) research project we trace elements of the recent history of group participation in sustainable development and the emergence of focus on four areas, most significantly how participatory methods are used. In the absence of strong evidence to contrary we suggest that the issue of how participants engage in participation remains a significant weakness for the field. In order to counter the apparent gap we suggest that a certain degree of structure and process can provide the oeuvre of participatory approaches with a higher degree of transparency in the research process and, by focus on the use of a method called Triple Task, group participatory events can be encouraged to yield greater insights into the workings of groups of all kinds. Copyright © 2012 Elsevier Ltd. All rights reserved.

  14. Shedding light on research participation effects in behaviour change trials: a qualitative study examining research participant experiences

    Directory of Open Access Journals (Sweden)

    Virginia MacNeill

    2016-01-01

    Full Text Available Abstract Background The sequence of events in a behaviour change trial involves interactions between research participants and the trial process. Taking part in such a study has the potential to influence the behaviour of the participant, and if it does, this can engender bias in trial outcomes. Since participants’ experience has received scant attention, the aim of this study is thus to generate hypotheses about which aspects of the conduct of behaviour change trials might matter most to participants, and thus have potential to alter subsequent behaviours and bias trial outcomes Methods Twenty participants were opportunistically screened for a health compromising behaviour (unhealthy diet, lack of exercise, smoking or alcohol consumption and recruited if eligible. Semi structured face to face interviews were conducted, after going through the usual processes involved in trial recruitment, baseline assessment and randomisation. Participants were given information on the contents of an intervention or control condition in a behaviour change trial, which was not actually implemented. Three months later they returned to reflect on these experiences and whether they had any effect on their behaviour during the intervening period. Data from the latter interview were analysed thematically using a modified grounded theory approach. Results The early processes of trial participation raised awareness of unhealthy behaviours, although most reported having had only fleeting intentions to change their behaviour as a result of taking part in this study, in the absence of interventions. However, careful examination of the accounts revealed evidence of subtle research participation effects, which varied according to the health behaviour, and its perceived social acceptability. Participants’ relationships with the research study were viewed as somewhat important in stimulating thinking about whether and how to make lifestyle changes. Conclusion These

  15. Research Participation Decision-Making Among Youth and Parents of Youth With Chronic Health Conditions.

    Science.gov (United States)

    Pagano-Therrien, Jesica; Sullivan-Bolyai, Susan

    The aims of this qualitative descriptive study were to describe how past experiences with research (including communication, information, values, and support) may contribute to research fatigue among youth and parents of youth with HIV, cystic fibrosis, and Type 1 diabetes. Eighteen parents and youth were purposively recruited from outpatient subspecialty clinics at a major academic medical center. They took part in qualitative interviews and completed a demographics form and the Decisional Conflict Scale. Youth participants also completed the Erikson Psychosocial Stage Inventory. Two major themes emerged: Blurred Lines and Hope for the Future. Research fatigue was not found in this sample. Results point to challenges with informed consent in settings where research and clinical care are integrated and suggest that protective factors allow for continued participation without excess burden on youth and parents. Strategies to minimize research fatigue and support engagement in research are offered. Copyright © 2016 National Association of Pediatric Nurse Practitioners. Published by Elsevier Inc. All rights reserved.

  16. Participant recruitment and motivation for participation in optical technology for cervical cancer screening research trials.

    Science.gov (United States)

    Shuhatovich, Olga M; Sharman, Mathilde P; Mirabal, Yvette N; Earle, Nan R; Follen, Michele; Basen-Engquist, Karen

    2005-12-01

    In order to improve recruitment for cervical cancer screening trials, it is necessary to analyze the effectiveness of recruitment strategies used in current trials. A trial to test optical spectroscopy for the diagnosis of cervical neoplasia recruited 1000 women from the community; the trial evaluated the emerging technology against Pap smears and colposcopically directed biopsies for cervical dysplasia. We have examined women's reasons for participating as well as the effectiveness and efficiency for each recruitment strategy. Reasons for participation were identified and compared between trials. The recruitment method that resulted in the most contacts was newspaper reportorial coverage and advertising, followed by family and friends, then television news coverage. The most cost-effective method for finding eligible women who attend the research appointment is word of mouth from a family member or friend. Recommendations are given for maximizing the efficiency of recruitment for cervical cancer screening trials.

  17. Facebook: an effective tool for participant retention in longitudinal research.

    Science.gov (United States)

    Mychasiuk, R; Benzies, K

    2012-09-01

    Facebook is currently one of the world's most visited websites, and home to millions of users who access their accounts on a regular basis. Owing to the website's ease of accessibility and free service, demographic characteristics of users span all domains. As such, Facebook may be a valuable tool for locating and communicating with participants in longitudinal research studies. This article outlines the benefit gained in a longitudinal follow-up study, of an intervention programme for at-risk families, through the use of Facebook as a search engine. Using Facebook as a resource, we were able to locate 19 participants that were otherwise 'lost' to follow-up, decreasing attrition in our study by 16%. Additionally, analysis indicated that hard-to-reach participants located with Facebook differed significantly on measures of receptive language and self-esteem when compared to their easier-to-locate counterparts. These results suggest that Facebook is an effective means of improving participant retention in a longitudinal intervention study and may help improve study validity by reaching participants that contribute differing results. © 2011 Blackwell Publishing Ltd.

  18. Participant observation, anthropology methodology and design anthropology research inquiry

    DEFF Research Database (Denmark)

    Gunn, Wendy; Buch Løgstrup, Louise

    2014-01-01

    of practice. They do so by combining participant observation, anthropology methodology and design anthropology research inquiry engaging with practice based explorations to understand if methods and methodologies, understood as being central to anthropological inquiry, can be taught to interaction design...... engineering students studying in an engineering faculty and engineers working in an energy company. They ask how do you generate anthropological capacities with interaction design engineering students engaged in engineering design processes and employees of an energy company setting out to reframe...... their relation with the private end user? What kind of ways can engaging within collaborative processes of designing offer opportunities for both designing and anthropological research inquiry simultaneously?...

  19. Research in biomechanics of occupant protection.

    Science.gov (United States)

    King, A I; Yang, K H

    1995-04-01

    This paper discusses the biomechanical bases for occupant protection against frontal and side impact. Newton's Laws of Motion are used to illustrate the effect of a crash on restrained and unrestrained occupants, and the concept of ride down is discussed. Occupant protection through the use of energy absorbing materials is described, and the mechanism of injury of some of the more common injuries is explained. The role of the three-point belt and the airbag in frontal protection is discussed along with the potential injuries that can result from the use of these restraint systems. Side impact protection is more difficult to attain but some protection can be derived from the use of padding or a side impact airbag. It is concluded that the front seat occupants are adequately protected against frontal impact if belts are worn in an airbag equipped vehicle. Side impact protection may not be uniform in all vehicles.

  20. Worldwide Research, Worldwide Participation: Web-Based Test Logger

    Science.gov (United States)

    Clark, David A.

    1998-01-01

    Thanks to the World Wide Web, a new paradigm has been born. ESCORT (steady state data system) facilities can now be configured to use a Web-based test logger, enabling worldwide participation in tests. NASA Lewis Research Center's new Web-based test logger for ESCORT automatically writes selected test and facility parameters to a browser and allows researchers to insert comments. All data can be viewed in real time via Internet connections, so anyone with a Web browser and the correct URL (universal resource locator, or Web address) can interactively participate. As the test proceeds and ESCORT data are taken, Web browsers connected to the logger are updated automatically. The use of this logger has demonstrated several benefits. First, researchers are free from manual data entry and are able to focus more on the tests. Second, research logs can be printed in report format immediately after (or during) a test. And finally, all test information is readily available to an international public.

  1. Sense and readability: participant information sheets for research studies.

    Science.gov (United States)

    Ennis, Liam; Wykes, Til

    2016-02-01

    Informed consent in research is partly achieved through the use of information sheets. There is a perception however that these information sheets are long and complex. The recommended reading level for patient information is grade 6, or 11-12 years old. To investigate whether the readability of participant information sheets has changed over time, whether particular study characteristics are related to poorer readability and whether readability and other study characteristics are related to successful study recruitment. Method: We obtained 522 information sheets from the UK National Institute for Health Research Clinical Research Network: Mental Health portfolio database and study principal investigators. Readability was assessed with the Flesch reading index and the Grade level test. Information sheets increased in length over the study period. The mean grade level across all information sheets was 9.8, or 15-16 years old. A high level of patient involvement was associated with more recruitment success and studies involving pharmaceutical or device interventions were the least successful. The complexity of information sheets had little bearing on successful recruitment. Information sheets are far more complex than the recommended reading level of grade 6 for patient information. The disparity may be exacerbated by an increasing focus on legal content. Researchers would benefit from clear guidance from ethics committees on writing succinctly and accessibly and how to balance the competing legal issues with the ability of participants to understand what a study entails. © The Royal College of Psychiatrists 2016.

  2. CEC radiation protection research and training program

    International Nuclear Information System (INIS)

    Gerber, G.B.

    1991-01-01

    The Radiation Protection Program (RPP), initiated as a consequence of the Euratom Treaty aims to promote: scientific knowledge to evaluate possible risks from low doses of natural, medical and man-made radiation; development of methods to assess radiological risks; incentive and support for cooperation between scientists of Member States; expertise in radiation protection by training scientists and the scientific basis for continual updating of the 'Basic Safety Standards', and the evolution of radiation protection concepts and practices. 3 refs

  3. Incentive Use in Research: Protecting Vulnerable Populations from Exploitation

    Directory of Open Access Journals (Sweden)

    Haruna Muwonge

    2013-06-01

    Full Text Available Global investment in Medical Research and Development has markedly increased in the last few decades. However, due to the decreasing public altruism, researchers have come under increased pressures from the funding bodies to produce results. Out of desperation, some researchers have resorted to using incentives as a means of sourcing for volunteers. Consequently, the research burden has disproportionately been shared among the most vulnerable populations in the society. Incentives especially monetary ones present an ethical dilemma because of the uncertainties’ surrounding the morality, amount and type of payment, vulnerability of volunteers and possible threats to voluntary participation. Several studies done on the use of incentives in medical research have noted that financial motivation was the number one reason for subjects to volunteer in Medical research. Mutual benefit and freedom of choice by participants were given as reasons to support their use. However, scientists who are against the use of incentives believe that they are coercive or undue inducements, and may influence a subjects’ ability to give an informed consent. Guidelines exist that protect vulnerable groups from exploitation, although none sheds light into the use of incentives. Nonetheless, in the face of the waning public altruism, the benefits of using incentives far outweigh the dangers, although researchers should avoid situations where their use may become problematic. As a mode of payment to research subjects, researchers should adopt a combination of the Dickerts’ Wage and re-imbursement models as guides in quantifying the incentive. [Archives Medical Review Journal 2013; 22(3.000: 408-417

  4. The Effectiveness of Public Participation in Developing and Implementing Tourism Plans for Two Peruvian Protected Areas

    Science.gov (United States)

    De la Cruz-Novey, H. Alicia

    2012-01-01

    In the last two decades protected area management approaches have experienced a shift from top-down management models to more diverse governance approaches that involve various forms and degrees of participation from local populations. These new participatory approaches seek to reaffirm cultural values, maintain cultural landscapes, recognize the…

  5. Protecting the Moon for research: ILEWG report

    Science.gov (United States)

    Foing, Bernard H.

    We give a report on recommendations with emphasis on environment protection, and since last COSPAR from ILEWG International conferences Exploration and Utilisation of the Moon on held at Cape Canaveral in 2008 (ICEUM10), and in Beijing in May 2010 with IAF (GLUC -ICEUM11). We discuss the different rationale for Moon exploration, as debated at ILEWG. ILEWG Science task group has listed priorities for scientific investigations: clues on the formation and evolution of rocky planets, accretion and bombardment in the inner solar system, comparative planetology processes (tectonic, volcanic, impact cratering, volatile delivery), records astrobiology, survival of organics; past, present and future life; sciences from a biology lunar laboratory. We discuss how to preserve Moon research potential in these areas while operating with instruments, landers, rover during a cooperative robotic village, and during the transition form lunar human outpost to permanent sustainable human base. We discuss how Moon-Mars Exploration can inspire solutions to global Earth sustained development with the trade-off of In-Situ Utilisation of resources; Establishment of permanent robotic infrastructures, Environmental and planetary protection aspects and lessons for Mars; Life sciences laboratories, and support to human exploration. Co-authors: ILEWG Task Groups on Science, Technology and Human Lunar Bases ILEWG Reference documents: http://sci.esa.int/ilewg -10th ILEWG Conference on Exploration and Utilisation of the Moon, NASA Lunar Ex-ploration Analysis Group-PSace Resources Roundtable, Cape Canaveral October 2008, pro-gramme online at http://sci.esa.int/ilewg/ -9th ILEWG Conference on Exploration and Utilisation of the Moon, ICEUM9 Sorrento 2007, programme online at http://sci.esa.int/ilewg/ -8th ILEWG Conference on Exploration and Utilisation of the Moon, Beijing July 2006, programme online at http://sci.esa.int/ilewg/ -The Moon and Near Earth Objects (P. Ehrenfreund , B.H. Foing, A

  6. Reflexivity: The Creation of Liminal Spaces--Researchers, Participants, and Research Encounters.

    Science.gov (United States)

    Enosh, Guy; Ben-Ari, Adital

    2016-03-01

    Reflexivity is defined as the constant movement between being in the phenomenon and stepping outside of it. In this article, we specify three foci of reflexivity--the researcher, the participant, and the encounter--for exploring the interview process as a dialogic liminal space of mutual reflection between researcher and participant. Whereas researchers' reflexivity has been discussed extensively in the professional discourse, participants' reflexivity has not received adequate scholarly attention, nor has the promise inherent in reflective processes occurring within the encounter. © The Author(s) 2015.

  7. ASPIRE: Active Societal Participation in Research and Education

    Science.gov (United States)

    Garza, C.; Parrish, J.; Harris, L.; Posselt, J.; Hatch, M.

    2017-12-01

    Active Societal Participation In Research and Education (ASPIRE) aims to cultivate a generation of geoscientists with the leadership knowledge and skills, scholarship, and material support to reframe and rebrand the geosciences as socially relevant and, thereby, to broaden participation in these fields. This generation of geoscientists will do so by bridging longstanding divides that impede access to and inclusion in the geosciences: between basic and applied science, between scholars in the academy and members of historically marginalized communities, and between the places where science is needed and the places where it is typically conducted. To bring about these types of change, we draw upon, refine, and institutionalize the working group model as the Mobile Working Group (MWG), directly referencing the need to move outside of the "ivory tower" and into the community. Led by a geoscientist with one foot in the academy and the other in the community - the Boundary Spanner - each MWG will focus on a single issue linked to a single community. ASPIRE supports multiple MWGs working across the geographic, ethnographic and "in practice" community space, as well as across the body of geoscience research and application. We hypothesize that in institutionalizing a new mode of geoscience research (MWG), learning from Boundary Spanners experiences with MWG, and refining a leadership development program from our findings, that we will have a scalable leadership tool and organizational structure that will rebrand the geosciences as socially relevant and inclusive of geoscientists from diverse backgrounds even as the "science space" of geoscience expands to incorporate in-community work.

  8. Privacy Protection Research of Mobile RFID

    Institute of Scientific and Technical Information of China (English)

    2007-01-01

    Radio Frequency Identification is one of the most controversial technologies at present.It is very difficult to detect who reads a tag incorporated into products owned by a person,a significant concern to privacy threats in RFID system arises from this reason.User privacy problem is prior considersion for mobile RFID service,because most mobile RFID service based on end-user service.Propose a solution for user privacy protection,which is a modification of EPC Class 1 Generation 2 protocol,and introduce a privacy protection scenario for mobile RFID service using this method.

  9. Balancing the risks and benefits of genomic data sharing: genome research participants' perspectives.

    Science.gov (United States)

    Oliver, J M; Slashinski, M J; Wang, T; Kelly, P A; Hilsenbeck, S G; McGuire, A L

    2012-01-01

    Technological advancements are rapidly propelling the field of genome research forward, while lawmakers attempt to keep apace with the risks these advances bear. Balancing normative concerns of maximizing data utility and protecting human subjects, whose privacy is at risk due to the identifiability of DNA data, are central to policy decisions. Research on genome research participants making real-time data sharing decisions is limited; yet, these perspectives could provide critical information to ongoing deliberations. We conducted a randomized trial of 3 consent types affording varying levels of control over data release decisions. After debriefing participants about the randomization process, we invited them to a follow-up interview to assess their attitudes toward genetic research, privacy and data sharing. Participants were more restrictive in their reported data sharing preferences than in their actual data sharing decisions. They saw both benefits and risks associated with sharing their genomic data, but risks were seen as less concrete or happening in the future, and were largely outweighed by purported benefits. Policymakers must respect that participants' assessment of the risks and benefits of data sharing and their privacy-utility determinations, which are associated with their final data release decisions, vary. In order to advance the ethical conduct of genome research, proposed policy changes should carefully consider these stakeholder perspectives. Copyright © 2011 S. Karger AG, Basel.

  10. Interview and recollection-based research with child disaster survivors: Participation-related changes in emotion and perceptions of participation

    Science.gov (United States)

    Hambrick, Erin P.; O’Connor, Bridget M.; Vernberg, Eric M.

    2015-01-01

    Objective Research suggests that some types of trauma research can be conducted safely with children ages 10 and older. The aim of this project was to learn more about potential risks or benefits of conducting research with younger children or with child disaster survivors, specifically about research that includes children providing trauma recollections. Method Fifty 8- to 12-year-old children who experienced a devastating tornado participated in an in-person interview that included both individual and joint (mother-child) recollections of their tornado experiences one year following exposure. These 50 children also rated three emotions at three timepoints and rated their perceptions (e.g., benefit and regret) of research post-participation. Children (N = 28) also participated in phone surveys three months later to assess persistent participation-related emotions and perceptions. Results Child reported emotions worsened from pre- to during participation; however, reports of emotions returned to pre-participation levels post-participation and remained so at the 3-month follow-up. Sixty-four percent of children reported at least some participation benefit and no participation regret immediately post-participation, as did 89.3% at the 3-month follow-up. Four percent of children reported some participation regret (no benefit) post-participation, and 0% three months later. No children requested to stop participating, and none required post-research connection with crisis services. Posttraumatic stress symptom severity, tornado exposure, and age were largely unrelated to child-reported emotions and perceptions of research. Conclusions Results indicate that carefully planned and executed disaster-related research that includes children providing recollections research can be conducted with preadolescents with little risk and some benefit. PMID:26390107

  11. The Responsibility to Protect - Research, Bibliography, Background ...

    International Development Research Centre (IDRC) Digital Library (Canada)

    Order the book. The international community faces no more critical issue currently than how to protect people caught in new and large-scale humanitarian crises — humanitarian intervention has been controversial both when it has happened, ... Birth registration is the basis for advancing gender equality and children's rights.

  12. Critical infrastructure protection research results of the first critical infrastructure protection research project in Hungary

    CERN Document Server

    Padányi, József

    2016-01-01

    This book presents recent research in the recognition of vulnerabilities of national systems and assets which gained special attention for the Critical Infrastructures in the last two decades. The book concentrates on R&D activities in the relation of Critical Infrastructures focusing on enhancing the performance of services as well as the level of security. The objectives of the book are based on a project entitled "Critical Infrastructure Protection Researches" (TÁMOP-4.2.1.B-11/2/KMR-2011-0001) which concentrated on innovative UAV solutions, robotics, cybersecurity, surface engineering, and mechatrinics and technologies providing safe operations of essential assets. This report is summarizing the methodologies and efforts taken to fulfill the goals defined. The project has been performed by the consortium of the Óbuda University and the National University of Public Service.

  13. Researchers' participation in and motivations for engaging with research information management systems.

    Directory of Open Access Journals (Sweden)

    Besiki Stvilia

    Full Text Available This article examined how researchers participated in research information management systems (RIMSs, their motivations for participation, and their priorities for those motivations. Profile maintenance, question-answering, and endorsement activities were used to define three cumulatively increasing levels of participation: Readers, Record Managers, and Community Members. Junior researchers were more engaged in RIMSs than were senior researchers. Postdocs had significantly higher odds of endorsing other researchers for skills and being categorized as Community Members than did full and associate professors. Assistant professors were significantly more likely to be Record Managers than were members of any other seniority categories. Finally, researchers from the life sciences showed a significantly higher propensity for being Community Members than Readers and Record Managers when compared with researchers from engineering and the physical sciences, respectively.When performing activities, researchers were motivated by the desire to share scholarship, feel competent, experience a sense of enjoyment, improve their status, and build ties with other members of the community. Moreover, when researchers performed activities that directly benefited other members of a RIMS, they assigned higher priorities to intrinsic motivations, such as perceived self-efficacy, enjoyment, and building community ties. Researchers at different stages of their academic careers and disciplines ranked some of the motivations for engaging with RIMSs differently. The general model of research participation in RIMSs; the relationships among RIMS activities; the motivation scales for activities; and the activity, seniority, and discipline-specific priorities for the motivations developed by this study provide the foundation for a framework for researcher participation in RIMSs. This framework can be used by RIMSs and institutional repositories to develop tools and design

  14. Researchers' participation in and motivations for engaging with research information management systems.

    Science.gov (United States)

    Stvilia, Besiki; Wu, Shuheng; Lee, Dong Joon

    2018-01-01

    This article examined how researchers participated in research information management systems (RIMSs), their motivations for participation, and their priorities for those motivations. Profile maintenance, question-answering, and endorsement activities were used to define three cumulatively increasing levels of participation: Readers, Record Managers, and Community Members. Junior researchers were more engaged in RIMSs than were senior researchers. Postdocs had significantly higher odds of endorsing other researchers for skills and being categorized as Community Members than did full and associate professors. Assistant professors were significantly more likely to be Record Managers than were members of any other seniority categories. Finally, researchers from the life sciences showed a significantly higher propensity for being Community Members than Readers and Record Managers when compared with researchers from engineering and the physical sciences, respectively. When performing activities, researchers were motivated by the desire to share scholarship, feel competent, experience a sense of enjoyment, improve their status, and build ties with other members of the community. Moreover, when researchers performed activities that directly benefited other members of a RIMS, they assigned higher priorities to intrinsic motivations, such as perceived self-efficacy, enjoyment, and building community ties. Researchers at different stages of their academic careers and disciplines ranked some of the motivations for engaging with RIMSs differently. The general model of research participation in RIMSs; the relationships among RIMS activities; the motivation scales for activities; and the activity, seniority, and discipline-specific priorities for the motivations developed by this study provide the foundation for a framework for researcher participation in RIMSs. This framework can be used by RIMSs and institutional repositories to develop tools and design mechanisms to increase

  15. Protecting human research subjects: the past defines the future.

    Science.gov (United States)

    Breault, Joseph L

    2006-01-01

    The creation of Institutional Review Boards to assure the protection of research subjects came out of terrible research abuses that resulted in the Belmont Report and federal regulations establishing rules for federally funded research and its independent review. The Common Rule became widely accepted as the way to oversee human research that is funded by federal agencies, or used in FDA submissions. The Office of Human Research Protections, now under the Secretary of DHHS, created Federalwide Assurances with groups that receive federal funding and others, the vast majority of which have agreed to apply the same ethical rules to all research regardless of funding source. There are controversies over the best methods to protect human research subjects, confusion about how to handle some of the gray areas, increased regulatory burdens, and debates about the adequacy of the IRB system. New exciting directions have evolved and overall, research subjects appear better protected than ever.

  16. 34 CFR 75.681 - Protection of human research subjects.

    Science.gov (United States)

    2010-07-01

    ... Conditions Must Be Met by a Grantee? Other Requirements for Certain Projects § 75.681 Protection of human research subjects. If a grantee uses a human subject in a research project, the grantee shall protect the person from physical, psychological, or social injury resulting from the project. (Authority: 20 U.S.C...

  17. High school youth and suicide risk: exploring protection afforded through physical activity and sport participation.

    Science.gov (United States)

    Taliaferro, Lindsay A; Rienzo, Barbara A; Miller, M David; Pigg, R Morgan; Dodd, Virginia J

    2008-10-01

    Suicide ranks as the third leading cause of death for adolescents. Recent data from the Centers for Disease Control and Prevention (CDC) indicate that the adolescent suicide rate increased 18% between 2003 and 2004. Sport may represent a promising protective factor against adolescent suicide. This study examined the relative risk of hopelessness and suicidality associated with physical activity and sport participation. Data from the CDC's 2005 Youth Risk Behavior Survey were analyzed. Logistic regression modeling was used to compare the odds of hopelessness and suicidality in students who engaged in various levels of physical activity to inactive students. Similar analyses were performed comparing risks of athletes to nonathletes, and the risks of highly involved athletes to nonathletes. Findings showed that frequent, vigorous activity reduced the risk of hopelessness and suicidality among male adolescents. However, low levels of activity actually increased the risk of feeling hopeless among young females. Yet, for both males and females, sport participation protected against hopelessness and suicidality. These findings indicate that involvement in sport confers unique psychosocial benefits that protect adolescents against suicidality. Findings suggest that mechanisms other than physical activity contribute to the protective association between sport and reduced suicidality. Social support and integration may account for some of the differences found in suicidality between athletes and nonathletes.

  18. Establishing a Radiation Protection Programme for a Research Reactor

    International Nuclear Information System (INIS)

    Abdallah, M. M.

    2014-04-01

    The nature and intensity of radiation from the operation of a research reactor depend on the type of reactor, its design features and its operational history. The protection of workers from the harmful effect of radiation must therefore be of paramount importance to any operating organization of a research reactor. This project report attempts to establish an operational radiation protection programme for a research reactor using the Ghana Research Reactor-1 as a case study. (au)

  19. The efficiency of state protection of participants in criminal proceedings from the impact of organized crime

    Directory of Open Access Journals (Sweden)

    Silchenko V.V.

    2014-12-01

    Full Text Available Illegal impact on victims and witnesses has acquired “epidemic” character and is the most dangerous form of counteraction to crimes investigation and solution. Based on his own experience of ensuring the safety of persons being the subject to state protection, the author proves the relevance and usefulness of such security measures when investigating the crimes committed by organized criminal groups (particularly grave and especially grave crimes. The problem of lack of confidence of participants in criminal proceedings in their own safety and their close persons’ safety is considered. Often the police officers themselves negatively affect this situation in case they don’t know how to implement the professional solutions in ensuring these persons’ security. A direct connection of public trust in the police with their ability to provide security of criminal proceedings participants is proved. The most effective security measures are: temporary placement in a safe place, personal protection (bodyguard, home and property protection. The mass media role in covering the positive results of law enforcement agencies activities on applying security measures for criminal proceedings participants and their close relatives is shown. The expediency of applying appropriate security measures for crimes committed by organized groups and criminal networks is emphasized: 1 it contributes to the realization of the criminal law objectives and principles, minimizes the possibility of avoiding criminal liability by criminals by unlawful impact on participants in criminal proceedings; 2 confidence in one’s own and close people’s safety favorably affects criminal investigations and excludes refusals to participate in criminal proceedings.

  20. Craigslist versus print newspaper advertising for recruiting research participants for alcohol studies: Cost and participant characteristics.

    Science.gov (United States)

    Gioia, Christopher J; Sobell, Linda Carter; Sobell, Mark B; Agrawal, Sangeeta

    2016-03-01

    Technology has transformed our lifestyles in dramatic and significant ways, including new and less expensive options for recruiting study participants. This study examines cost and participant differences between two recruitment sources, Craigslist (CL), and print newspapers (PNs). This paper also reviewed and compared studies involving clinical trials published since 2010 that recruited participants using CL alone or in combination with other methods. Secondary data analyses from a parent study involving a randomized controlled trial of a mail-based intervention to promote self-change with problem drinkers. Significant differences were found between CL and PN participants on most demographic and pretreatment drinking variables. While all participants had AUDIT scores suggestive of an alcohol problem and reported drinking at high-risk levels, CL participants had less severe drinking problem histories, were considerably younger, and had a higher socioeconomic status than PN participants. The total advertising costs for the 65 CL ads ($275) were significantly less than the 69 PN ads ($33, 311). The recruiting cost per eligible participant was vastly less expensive using CL ($1.46) compared to print newspaper ads ($116.88). Using CL is a viable recruitment method for soliciting participants, particularly those that are younger, for alcohol intervention studies. It is also less expensive than newspaper ads. When CL participants were recruited, they reported being slightly more confident to change their drinking than PN participants. Limitations of using CL are discussed, including that some initial ad responders gave inconsistent answers to similar questions and a few tried to enter the study more than once. Copyright © 2015 Elsevier Ltd. All rights reserved.

  1. The activities and prospect of planetary protection research in China

    Science.gov (United States)

    Li, Ming

    2016-07-01

    Planetary protection is an important activities and responsibilities for space exploration. In Chinese manned missions, micro-organism research and protection has been developed in Shenzhou-9, Shenzhou-10 and Tiangong-2 missions. In the experiment facility of Lunar Palace-1, the micro-organism pollution and protection/control technology has been studied. In the lunar sample recovery mission and China Mars mission, the planetary protection has become an important issue. This paper introduced the research about planetary protection in China. The planetary protection activities, strategy and procedures have been suggested for future space exploration program to meet the requirement for planetary protection, such as cabin pollution isolation, pollutant detection, and so on.

  2. Researching Lifelong Learning Participation through an Interdisciplinary Lens

    Science.gov (United States)

    Boeren, Ellen

    2017-01-01

    This paper explores the interdisciplinary nature of studies in the field of lifelong learning participation. Until recently, participation studies have been presented in a rather fragmented way, often drawing on insights from separate disciplines such as sociology or psychology. The complex nature of lifelong learning participation, however, urges…

  3. Cancer Research Participation Beliefs and Behaviors of a Southern Black Population: A Quantitative Analysis of the Role of Structural Factors in Cancer Research Participation.

    Science.gov (United States)

    Farr, Deeonna E; Brandt, Heather M; Comer, Kimberly D; Jackson, Dawnyéa D; Pandya, Kinjal; Friedman, Daniela B; Ureda, John R; Williams, Deloris G; Scott, Dolores B; Green, Wanda; Hébert, James R

    2015-09-01

    Increasing the participation of Blacks in cancer research is a vital component of a strategy to reduce racial inequities in cancer burden. Community-based participatory research (CBPR) is especially well-suited to advancing our knowledge of factors that influence research participation to ultimately address cancer-related health inequities. A paucity of literature focuses on the role of structural factors limiting participation in cancer research. As part of a larger CBPR project, we used survey data from a statewide cancer needs assessment of a Black faith community to examine the influence of structural factors on attitudes toward research and the contributions of both structural and attitudinal factors on whether individuals participate in research. Regression analyses and non-parametric statistics were conducted on data from 727 adult survey respondents. Structural factors, such as having health insurance coverage, experiencing discrimination during health care encounters, and locale, predicted belief in the benefits, but not the risks, of research participation. Positive attitudes toward research predicted intention to participate in cancer research. Significant differences in structural and attitudinal factors were found between cancer research participants and non-participants; however, directionality is confounded by the cross-sectional survey design and causality cannot be determined. This study points to complex interplay of structural and attitudinal factors on research participation as well as need for additional quantitative examinations of the various types of factors that influence research participation in Black communities.

  4. Research participants want to feel they are better off than they were before research was introduced to them”: engaging cameroonian rural plantation populations in HIV research

    Directory of Open Access Journals (Sweden)

    Kiawi Emmanuel

    2012-06-01

    Full Text Available Abstract Background During a period of evolving international consensus on how to engage communities in research, facilitators and barriers to participation in HIV prevention research were explored in a rural plantation community in the coastal region of Cameroon. Methods A formative rapid assessment using structured observations, focus group discussions (FGD, and key informant interviews (KIIs was conducted with a purposive non-probabilistic sample of plantation workers and their household members. Eligibility criteria included living or working >1 year within the plantation community and age >18 years. Both rapid and in-depth techniques were used to complete thematic analysis. Results Sixty-five persons participated in the study (6 FGDs and 12 KIIs. Participants viewed malaria and gastrointestinal conditions as more common health concerns than HIV. They identified three factors as contributing to HIV risk: concurrent sexual relationships, sex work, and infrequent condom use. Interviewees perceived that the community would participate in HIV research if it is designed to: (1 improve community welfare, (2 provide comprehensive health services and treatment for illnesses, (3 protect the personal information of participants, especially those who test positive for HIV, (4 provide participant incentives, (5 incorporate community input, and (6 minimize disruptions to “everyday life”. Barriers to participation included: (1 fear of HIV testing, (2 mistrust of researchers given possible disrespect or intolerance of plantation community life and lack of concern for communication, (3 time commitment demands, (3 medical care and treatment that would be difficult or costly to access, and (4 life disruptions along with potential requirements for changes in behaviour (i.e., engage in or abstain from alcohol use and sex activities. Conclusions Consistent with UNAIDS guidelines for good participatory practice in HIV prevention research, study

  5. Doing more good than harm? The effects of participation in sex research on young people in the Netherlands.

    Science.gov (United States)

    Kuyper, Lisette; de Wit, John; Adam, Philippe; Woertman, Liesbeth

    2012-04-01

    Ethical guidelines for research with human participants stress the importance of minimizing risks and maximizing benefits. In order to assist Institutional Review Boards (IRBs) and researchers to make more informed risk/benefit analyses with regard to sex research among adolescents, the current study examined the effects of participation in sex research among 899 young people (15-25 years old). Participants completed three questionnaires on a wide range of sexuality-related measures. They also completed scales measuring their levels of distress, need for help, and positive feelings due to their research participation. In general, negative effects of research participation seemed limited, while benefits of participation appeared substantial. Several differences with regard to sociodemographic characteristics were found (e.g., females experienced more distress then males and younger or lower educated participants experienced more positive feelings). In addition, victims of sexual coercion reported more distress and need for help due to their participation, but also experienced more positive feelings. No significant differences were found in relation to experience with sexual risk behaviors (e.g., experience with one-night-stands). Several limitations of the study were discussed, as were implications for future research. Overall, the findings caution IRBs and researchers against being overly protective regarding the inclusion of young people in sex research.

  6. Ethical issues in identifying and recruiting participants for familial genetic research.

    Science.gov (United States)

    Beskow, Laura M; Botkin, Jeffrey R; Daly, Mary; Juengst, Eric T; Lehmann, Lisa Soleymani; Merz, Jon F; Pentz, Rebecca; Press, Nancy A; Ross, Lainie Friedman; Sugarman, Jeremy; Susswein, Lisa R; Terry, Sharon F; Austin, Melissa A; Burke, Wylie

    2004-11-01

    Family-based research is essential to understanding the genetic and environmental etiology of human disease. The success of family-based research often depends on investigators' ability to identify, recruit, and achieve a high participation rate among eligible family members. However, recruitment of family members raises ethical concerns due to the tension between protecting participants' privacy and promoting research quality, and guidelines for these activities are not well established. The Cancer Genetics Network Bioethics Committee assembled a multidisciplinary group to explore the scientific and ethical issues that arise in the process of family-based recruitment. The group used a literature review as well as expert opinion to develop recommendations about appropriate approaches to identifying, contacting, and recruiting family members. We conclude that there is no single correct approach, but recommend a balanced approach that takes into account the nature of the particular study as well as its recruitment goals. Recruitment of family members should be viewed as part of the research protocol and should require appropriate informed consent of the already-enrolled participant. Investigators should inform prospective participants why they are being contacted, how information about them was obtained, and what will happen to that information if they decide not to participate. The recruitment process should also be sensitive to the fact that some individuals from families at increased genetic risk will have no prior knowledge of their risk status. These recommendations are put forward to promote further discussion about the advantages and disadvantages of various approaches to family-based recruitment. They suggest a framework for considering alternative recruitment strategies and their implications, as well as highlight areas in need of further empirical research. (c) 2004 Wiley-Liss, Inc.

  7. Understanding Ethical Issues of Research Participation from the Perspective of Participating Children and Adolescents: A Systematic Review

    Science.gov (United States)

    Broome, Marion E.

    2017-01-01

    Background The past twenty years have seen distinct shifts in the way the participation of children and adolescents in research is viewed. This has been emphasized by the growing pediatric research enterprise. Additional information on children’s and adolescents’ experiences during research participation is needed to better inform researchers on the ethical conduct of research with this vulnerable population. Aims The objective of this analysis was to examine ethical issues in research with children and adolescents from their perspective as participants, including: assent, parental consent, risk perception, impact of research participation, and incentives. Methods This systematic review was conducted per the Long et al. framework by means of an iterative searching process. Using the key words ‘research ethics’ and ‘child or pediatric or adolescent’, PubMed, CINAHL, and EBSCOhost databases were searched to identify articles. Limitations placed on the original searches were: English language, year of publication between 2003–2014, humans, abstract available, and age birth–18 years. Findings Twenty-three empiric studies were identified and formed the sample. Included studies represented a diverse range of areas of research, methods, settings, sample demographics, authors, and journals. Discussion Even young children demonstrated the ability to understand essential elements of research, although there is variability in children’s level of understanding. Trust was a significant contributing factor to children’s and adolescents’ participation in research, and also shaped their assessments of risk. Research participation was mainly beneficial for children and adolescents. Incentives were mainly viewed positively, although concerns of possible undue influence were expressed. Linking Evidence to Action This systematic review highlights the importance of including the perspectives of children and adolescents and provides researchers and nurse clinicians

  8. Participation, political economy and protection: food aid governance in Darfur, Sudan.

    Science.gov (United States)

    Young, Helen; Maxwell, Daniel

    2013-10-01

    Humanitarian food assistance aims to meet short-term emergency needs, yet often it is sustained over many years and develops its own systems and infrastructure that interact with local governance and local communities. This paper explores the links between participation and local governance, as well as the implications for exclusion of certain groups, the dignity of those involved, and protection issues. The paper proposes a framework for reviewing the governance functions and capacities of local Food Relief Committees, based on the following criteria: accountability; gender equity; legitimacy and authority; representativeness; responsiveness; and transparency. A case study of the Darfur region reviews how local governance evolves as a result of both the wider conflict and of adapting to the international humanitarian system, itself a form of governance. The paper concludes by proposing three strategies for enhancing participation and applying lessons learned: improved analysis of participation; linking programming strategies and protection; and taking account of governance functions and capacities. © 2013 The Author(s). Disasters © Overseas Development Institute, 2013.

  9. Customer Satisfaction in Participation Banks: A Research in Kastamonu

    Directory of Open Access Journals (Sweden)

    Serkan Dilek

    2017-10-01

    Full Text Available Interest income is considered as forbidden in Islam. Therefore in Turkey, conservatives generally don’t prefer general banking and by this way funds can’t be used in economic system. So saving deficit can’t be solved in country and saving of people depreciates against inflation. Participation banks which work according to Islamic rules are set up to bring these funds to economy. Participation banking operates in more than 60 countries today and conservatives generally prefer to work with because they are working to principles of profit instead of interest. To attract and persuade more people, at first participation banks should satisfy their customers. In our study we aim to measure customer satisfaction in participation banks in Kastamonu and to reveal the differences between demographic groups. To this aim we conducted a questionnaire to customers of participation banks in Kastamonu.

  10. Climate protection in the context. The role of training and participation on the way in a climate friendly society; Klimaschutz im Kontext. Die Rolle von Bildung und Partizipation auf dem Weg in eine klimafreundliche Gesellschaft

    Energy Technology Data Exchange (ETDEWEB)

    Zschiesche, Michael (ed.) [Unabhaengiges Inst. fuer Umweltfragen - UfU e.V., Berlin (Germany)

    2013-02-01

    In Germany, climate protection measures have been intensively discussed in the public. Within this discussion, the climate protection is considered as a fiscal or technical measure but not as a cultural challenge. Under this aspect, fourteen German social scientists report on essential questions concerning to the training processes and participation processes in context to the climate protection. Successful training and participation processes in the climate protection as well as the newest results of the environmental psychology and lifestyle research are presented.

  11. Seeing eye to eye or not? Young people's and child protection workers' perspectives on children's participation within the Dutch child protection and welfare services

    NARCIS (Netherlands)

    Brandsma-van Bijleveld, G.G.; Dedding, C.W.M.; Bunders-Aelen, J.G.F.

    2014-01-01

    Objective: Child participation is internationally seen as a crucial aspect of child protection and child welfare. Scholars have differences of opinion about what participation entails, but even less is known about whether children and case managers have similar perspectives on participation and its

  12. Human Participants in Engineering Research: Notes from a Fledgling Ethics Committee.

    Science.gov (United States)

    Koepsell, David; Brinkman, Willem-Paul; Pont, Sylvia

    2015-08-01

    For the past half-century, issues relating to the ethical conduct of human research have focused largely on the domain of medical, and more recently social-psychological research. The modern regime of applied ethics, emerging as it has from the Nuremberg trials and certain other historical antecedents, applies the key principles of: autonomy, respect for persons, beneficence, non-maleficence, and justice to human beings who enter trials of experimental drugs and devices (Martensen in J Hist Med Allied Sci 56(2):168-175, 2001). Institutions such as Institutional Review Boards (in the U.S.) and Ethics Committees (in Europe and elsewhere) oversee most governmentally-funded medical research around the world, in more than a hundred nations that are signers of the Declaration of Helsinki (World Medical Association 2008). Increasingly, research outside of medicine has been recognized to pose potential risks to human subjects of experiments. Ethics committees now operate in the US, Canada, the U.K. and Australia to oversee all governmental-funded research, and in other jurisdictions, the range of research covered by such committees is expanding. Social science, anthropology, and other fields are falling under more clear directives to conduct a formal ethical review for basic research involving human participants (Federman et al. in Responsible research: a systems approach to protecting research participants. National Academies Press, Washington, 2003, p. 36). The legal and institutional response for protecting human subjects in the course of developing non-medical technologies, engineering, and design is currently vague, but some universities are establishing ethics committees to oversee their human subjects research even where the experiments involved are non-medical and not technically covered by the Declaration of Helsinki. In The Netherlands, as in most of Europe, Asia, Latin America, or Africa, no laws mandate an ethical review of non-medical research. Yet, nearly 2

  13. Social participation and healthy ageing: a neglected, significant protective factor for chronic non communicable conditions

    Directory of Open Access Journals (Sweden)

    Joseph Jennifer

    2011-10-01

    Full Text Available Abstract Background Low and middle income countries are ageing at a much faster rate than richer countries, especially in Asia. This is happening at a time of globalisation, migration, urbanisation, and smaller families. Older people make significant contributions to their families and communities, but this is often undermined by chronic disease and preventable disability. Social participation can help to protect against morbidity and mortality. We argue that social participation deserves much greater attention as a protective factor, and that older people can play a useful role in the prevention and management of chronic conditions. We present, as an example, a low-cost, sustainable strategy that has increased social participation among elders in Sri Lanka. Discussion Current international policy initiatives to address the increasing prevalence of non-communicable chronic diseases are focused on cardiovascular disease, diabetes, respiratory disease and cancers, responsible for much premature mortality. Interventions to modify their shared risk factors of high salt and fat diets, inactivity, smoking and alcohol use are advocated. But older people also suffer chronic conditions that primarily affect quality of life, and have a wider range of risk factors. There is strong epidemiological and physiological evidence that social isolation, in particular, is as important a risk factor for chronic diseases as the 'lifestyle' risk factors, yet it is currently neglected. There are useful experiences of inexpensive and sustainable strategies to improve social participation among older people in low and lower middle income countries. Our experience with forming Elders' Clubs with retired tea estate workers in Sri Lanka suggests many benefits, including social support and participation, inter-generational contact, a collective voice, and facilitated access to health promotion activities, and to health care and social welfare services. Summary Policies to

  14. FACTORS AFFECTING WOMEN’S AUTONOMOUS DECISION MAKING IN RESEARCH PARTICIPATION AMONGST YORUBA WOMEN OF WESTERN NIGERIA

    Science.gov (United States)

    PRINCEWILL, CHITU WOMEHOMA; JEGEDE, AYODELE S.; NORDSTRöM, KARIN; LANRE-ABASS, BOLATITO; ELGER, BERNICE SIMONE

    2016-01-01

    Research is a global enterprise requiring participation of both genders for generalizable knowledge; advancement of science and evidence based medical treatment. Participation of women in research is necessary to reduce the current bias that most empirical evidence is obtained from studies with men to inform health care and related policy interventions. Various factors are assumed to limit autonomy amongst the Yoruba women of western Nigeria. This paper seeks to explore the experience and understanding of autonomy by the Yoruba women in relation to research participation. Focus is on factors that affect women’s autonomous decision making in research participation. An exploratory qualitative approach comprising four focus group discussions, 42 in-depth interviews and 14 key informant interviews was used. The study permits a significant amount of triangulation, as opinions of husbands and religious leaders are also explored. Interviews and discussions were audiotaped and transcribed verbatim. Content analysis was employed for data analysis. Findings show that concepts of autonomy varied amongst the Yoruba women. Patriarchy, religion and culture are conceived to have negative impact on the autonomy of women in respect to research participation. Among the important findings are: 1) male dominance is strongly emphasized by religious leaders who should teach equality, 2) while men feel that by making decisions for women, they are protecting them, the women on the other hand see this protection as a way of limiting their autonomy. We recommend further studies to develop culturally appropriate and workable recruitment methods to increase women’s participation in research. PMID:26871880

  15. Surrogate receptivity to participation in critical illness genetic research: aligning research oversight and stakeholder concerns.

    Science.gov (United States)

    Freeman, Bradley D; Butler, Kevin; Bolcic-Jankovic, Dragana; Clarridge, Brian R; Kennedy, Carie R; LeBlanc, Jessica; Chandros Hull, Sara

    2015-04-01

    Collection of genetic biospecimens as part of critical illness investigations is increasingly commonplace. Oversight bodies vary in restrictions imposed on genetic research, introducing inconsistencies in study design, potential for sampling bias, and the possibility of being overly prohibitive of this type of research altogether. We undertook this study to better understand whether restrictions on genetic data collection beyond those governing research on cognitively intact subjects reflect the concerns of surrogates for critically ill patients. We analyzed survey data collected from 1,176 patients in nonurgent settings and 437 surrogates representing critically ill adults. Attitudes pertaining to genetic data (familiarity, perceptions, interest in participation, concerns) and demographic information were examined using univariate and multivariate techniques. We explored differences among respondents who were receptive (1,333) and nonreceptive (280) to genetic sample collection. Whereas factors positively associated with receptivity to research participation were "complete trust" in health-care providers (OR, 2.091; 95% CI, 1.544-2.833), upper income strata (OR, 2.319; 95% CI, 1.308-4.114), viewing genetic research "very positively" (OR, 3.524; 95% CI, 2.122-5.852), and expressing "no worry at all" regarding disclosure of results (OR, 2.505; 95% CI, 1.436-4.369), black race was negatively associated with research participation (OR, 0.410; 95% CI, 0.288-0.585). We could detect no difference in receptivity to genetic sample collection comparing ambulatory patients and surrogates (OR, 0.738; 95% CI, 0.511-1.066). Expressing trust in health-care providers and viewing genetic research favorably were associated with increased willingness for study enrollment, while concern regarding breach of confidentiality and black race had the opposite effect. Study setting had no bearing on willingness to participate.

  16. Wildland Fire Research: Water Supply and Ecosystem Protection

    Science.gov (United States)

    Research is critical to better understand how fires affect water quality and supply and the overall health of an ecosystem. This information can be used to protect the safety of drinking water and assess the vulnerability of water supplies.

  17. Issues in protection of human subjects in internet research.

    Science.gov (United States)

    Im, Eun-Ok; Chee, Wonshik

    2002-01-01

    Despite the increasing use of the Internet among nurses, the use of the Internet in nursing research has been rarely discussed and critiqued in terms of issues in protection of human subjects. In this article, issues in protection of human subjects in Internet research are explored by analyzing an Internet study to propose directions for human protection in Internet research. Issues raised through the study include those related to (a) anonymity and confidentiality, (b) security, (c) self-determination and authenticity, (d) full disclosure, and (e) fair treatment. Based on discussion of the five issues, development of standardized guidelines, investigator triangulation, and information sharing are proposed as directions for protection of human subjects in Internet research.

  18. Multi-donor Research Platform on Social Protection, Financial ...

    International Development Research Centre (IDRC) Digital Library (Canada)

    Multi-donor Research Platform on Social Protection, Financial Inclusion and ICTs ... been some experiments linking a financial inclusion component to CCT programs, ... Institution. Universidad de Chile. Pays d' institution. Chile. Site internet.

  19. Multi-donor Research Platform on Social Protection, Financial ...

    International Development Research Centre (IDRC) Digital Library (Canada)

    Multi-donor Research Platform on Social Protection, Financial Inclusion and ... There have been some experiments linking a financial inclusion component to CCT programs, ... Universidad de Chile. Institution Country. Chile. Institution Website.

  20. Susceptibility of elderly Asian immigrants to persuasion with respect to participation in research.

    Science.gov (United States)

    Brugge, Doug; Kole, Alison; Lu, Weibo; Must, Aviva

    2005-04-01

    Familism, respect for authority, and a sense of shame/pride are cultural characteristics that might influence research participation of Asian Americans. We compared 79 elderly Asian immigrants, most of whom immigrated from China or Hong Kong, with 58 elders who were not Asian and mostly not immigrants. Responding to hypothetical situations presented on a self-administered questionnaire, the Asian group professed to be more likely to be influenced by a request from a son/daughter, landlord, physician, or advertisement (p<0.001) and by a monetary incentive (p=0.05). Multivariate adjustment for potential confounders attenuated the strength of these relations, but except in the case of the monetary offer, differences remained statistically significant. Within the Asian group, multivariate logistic regression modeling indicated that years lived in the US was associated with more likelihood of refusing requests to participate in research. We conclude that acculturation or assimilation into American society may build resistance to pressure to participate in research. Our findings also suggest that elderly Asian immigrants may need additional protections to achieve truly informed consent.

  1. Children's self reported discomforts as participants in clinical research.

    NARCIS (Netherlands)

    Staphorst, M.S.; Hunfeld, J.A.M.; van de Vathorst, S.; Passchier, J.; van Goudoever, J.B.

    2015-01-01

    Introduction: There is little empirical evidence on children's subjective experiences of discomfort during clinical research procedures. Therefore, Institutional Review Boards have limited empirical information to guide their decision-making on discomforts for children in clinical research. To get

  2. Children's self reported discomforts as participants in clinical research

    NARCIS (Netherlands)

    Staphorst, Mira S.; Hunfeld, Joke A. M.; van de Vathorst, Suzanne; Passchier, Jan; van Goudoever, Johannes B.

    2015-01-01

    There is little empirical evidence on children's subjective experiences of discomfort during clinical research procedures. Therefore, Institutional Review Boards have limited empirical information to guide their decision-making on discomforts for children in clinical research. To get more insight

  3. Combining motivational and volitional interventions to promote exercise participation: protection motivation theory and implementation intentions.

    Science.gov (United States)

    Milne, Sarah; Orbell, Sheina; Sheeran, Paschal

    2002-05-01

    This study compared a motivational intervention based on protection motivation theory (PMT, Rogers, 1975, 1983) with the same motivational intervention augmented by a volitional intervention based on implementation intentions (Gollwitzer, 1993). The study had a longitudinal design, involving three waves of data collection over a 2-week period, incorporating an experimental manipulation of PMT variables at Time 1 and a volitional, implementation intention intervention at Time 2. Participants (N=248) were randomly allocated to a control group or one of two intervention groups. Cognitions and exercise behaviour were measured at three time-points over a 2-week period. The motivational intervention significantly increased threat and coping appraisal and intentions to engage in exercise but did not bring about a significant increase in subsequent exercise behaviour. In contrast, the combined protection motivation theory/implementation intention intervention had a dramatic effect on subsequent exercise behaviour. This volitional intervention did not influence behavioural intention or any other motivational variables. It is concluded that supplementing PMT with implementation intentions strengthens the ability of the model to explain behaviour. This has implications for health education programmes, which should aim to increase both participants' motivation and their volition.

  4. Children as Researchers in Primary Schools: Choice, Voice and Participation

    Science.gov (United States)

    Bucknall, Sue

    2012-01-01

    "Children as Researchers in Primary Schools" is an innovative and unique resource for practitioners supporting children to become "real world" researchers in the primary classroom. It will supply you with the skills and ideas you need to implement a "children as researchers" framework in your school that can be adapted for different ages and…

  5. Radiation protection in a multi-disciplinary research laboratory

    International Nuclear Information System (INIS)

    O'Donovan, E.J.B.; Jenks, G.J.; Brighton, D.R.

    1993-01-01

    This paper describes the measures for the protection of personnel against the hazards of ionising and non-ionising radiation at the Materials Research Laboratory (MRL) in Victoria. The paper describes MRL safety and protection policy and management, and gives brief details of procedures and problems at the working level. A comparison of MRL average annual photon doses with all Governmental Research Institutions and industry is given. The good safety record of MRL is evident and shows that the radioactive protection issues are well handled. 4 figs

  6. Protecting Privacy and Confidentiality in Environmental Health Research.

    Science.gov (United States)

    Resnik, David B

    2010-01-01

    Environmental health researchers often need to make difficult decisions on how to protect privacy and confidentiality when they conduct research in the home or workplace. These dilemmas are different from those normally encountered in clinical research. Although protecting privacy and confidentiality is one of the most important principles of research involving human subjects, it can be overridden to prevent imminent harm to individuals or if required by law. Investigators should carefully consider the facts and circumstances and use good judgment when deciding whether to breach privacy or confidentiality.

  7. Common strategic research agenda for radiation protection in medicine.

    Science.gov (United States)

    2017-04-01

    Reflecting the change in funding strategies for European research projects, and the goal to jointly improve medical radiation protection through sustainable research efforts, five medical societies involved in the application of ionising radiation (European Association of Nuclear Medicine, EANM; European Federation of Organizations for Medical Physics. EFOMP; European Federation of Radiographer Societies, EFRS; European Society of Radiology, ESR; European Society for Radiotherapy and Oncology, ESTRO) have identified research areas of common interest and developed this first edition of the Common Strategic Research Agenda (SRA) for medical radiation protection. The research topics considered necessary and most urgent for effective medical care and efficient in terms of radiation protection are summarised in five main themes: 1. Measurement and quantification in the field of medical applications of ionising radiation 2. Normal tissue reactions, radiation-induced morbidity and long-term health problems 3. Optimisation of radiation exposure and harmonisation of practices 4. Justification of the use of ionising radiation in medical practice 5. Infrastructures for quality assurance The SRA is a living document; thus comments and suggestions by all stakeholders in medical radiation protection are welcome and will be dealt with by the European Alliance for Medical Radiation Protection Research (EURAMED) established by the above-mentioned societies. • Overcome the fragmentation of medical radiation protection research in Europe • Identify research areas of joint interest in the field of medical radiation protection • Improve the use of ionising radiation in medicine • Collect stakeholder feedback and seek consensus • Emphasise importance of clinical translation and evaluation of research results.

  8. Potential Factors Influencing Indigenous Education Participation and Achievement. Research Report

    Science.gov (United States)

    Biddle, Nicholas; Cameron, Timothy

    2012-01-01

    This report examines two sets of issues, the first being whether Indigenous Australians obtain a lower return on investment in education and training than other Australians. If they do, then this would partly explain why, in general, Indigenous participation in education and training is relatively low. The second issue is whether Indigenous…

  9. Participation in Education. ACER Research Monograph No. 30.

    Science.gov (United States)

    Williams, Trevor; And Others

    Participation in education in Australia is reported, with attention to: completion of year 12; postsecondary education; technical and further education (TAFE); apprenticeships; higher education; universities; Colleges of Advanced Education (CAEs); and degree programs. Data from two national probability samples of young people 4 years apart in age…

  10. Research issues for radiation protection for man during prolonged spaceflight

    Energy Technology Data Exchange (ETDEWEB)

    Conklin, J.J.; Hagan, M.P.

    1987-01-01

    For the purpose of this article, radiation protection is defined as any physical, chemical, biological, or pharmacological modality that accomplishes the goal of protecting the astronaut from radiation hazard or increases his ability to assist other astronauts or spacecraft. Thoughtful examination of these largely operational considerations led to identification of medical and radiobiological research required to support the industrialization of near-Earth space. The scope of these research efforts involves thematic issues that have been defined after review of the available preliminary research from several scientific disciplines that relate to the problem of radiation protection in space. This article serves to highlight areas of research requiring further investigation. While certain of these needs for research are driven by the planned orbits involving small designated astronaut populations and well-defined durations that may be specific to the military, it is the use of geostationary orbits, permanent lunar basing, and the proposed Mars mission that form the primary basis for these operational considerations.

  11. Developing Research-Ready Skills: Preparing Early Academic Students for Participation in Research Experiences

    Science.gov (United States)

    Charlevoix, D. J.; Morris, A. R.

    2015-12-01

    Engaging lower-division undergraduates in research experiences is a key but challenging aspect of guiding talented students into the geoscience research pipeline. UNAVCO conducted a summer internship program to prepare first and second year college students for participation in authentic, scientific research. Many students in their first two years of academic studies do not have the science content knowledge or sufficient math skills to conduct independent research. Students from groups historically underrepresented in the geosciences may face additional challenges in that they often have a less robust support structure to help them navigate the university environment and may be less aware of professional opportunities in the geosciences.UNAVCO, manager of NSF's geodetic facility, hosted four students during summer 2015 internship experience aimed to help them develop skills that will prepare them for research internships and skills that will help them advance professionally. Students spent eight weeks working with UNAVCO technical staff learning how to use equipment, prepare instrumentation for field campaigns, among other technical skills. Interns also participated in a suite of professional development activities including communications workshops, skills seminars, career circles, geology-focused field trips, and informal interactions with research interns and graduate student interns at UNAVCO. This presentation will outline the successes and challenges of engaging students early in their academic careers and outline the unique role such experiences can have in students' academic careers.

  12. Participant Outcomes from Methods of Recruitment for Videogame Research.

    Science.gov (United States)

    Ryan, Courtney; Dadabhoy, Hafza; Baranowski, Tom

    2018-02-01

    The most productive methods of recruitment for a videogame for health (G4H) trial are not known. Success or failure of recruitment methods has been reported for a variety of clinical trials, but few specifically for G4H trials. This study's goal was to recruit 444 overweight or obese (body mass index percentile between the 84.5th-99.4th percentiles) children between the ages of 10-12 years. The article reports the results of different methods of participant recruitment. Participants had to agree to three fasting blood samples (baseline, immediately after, and 2 months later); be willing to wear an accelerometer for 7 days at each assessment; read and speak English fluently (because the games were in English); have no history of any condition that would affect what he/she could eat or how much physical activity he/she could get; and have an eligible home computer purchased in the last 5 years with high-speed internet. Hardware criteria reflected the types of computers upon which Diab-Nano could be effectively played. Recruitment was conducted over a 35-month period and included electronic media, print advertising, community recruitment, and an internal volunteer list. Respondents were guided to a web-based screening questionnaire that asked for source of hearing about the study. Although diverse recruitment methods were used, slow recruitment resulted in obtaining only 45% of the recruitment goal (n = 199). Electronic media (e.g., radio, television, and internet), which reached millions of targeted parents, resulted in only 76 respondents, of whom 13 became participants; print media (e.g., magazine, newsletter/newspaper, and mail), which also reached large numbers of parents, resulted in 192 respondents, of whom 19 became participants; community recruitment (e.g., school, friend or family, doctors office, flyer, work, community program) resulted in 162 respondents, of whom 38 became participants; and the internal volunteer list resulted in 413 respondents, of

  13. Ethical Issues Affecting Human Participants in Community College Research

    Science.gov (United States)

    Wurtz, Keith

    2011-01-01

    The increasing demand of constituents to conduct analyses in order to help inform the decision-making process has led to the need for Institutional Research (IR) guidelines for community college educators. One method of maintaining the quality of research conducted by IR staff is to include professional development about ethics. This article…

  14. Triangulation, Respondent Validation, and Democratic Participation in Mixed Methods Research

    Science.gov (United States)

    Torrance, Harry

    2012-01-01

    Over the past 10 years or so the "Field" of "Mixed Methods Research" (MMR) has increasingly been exerting itself as something separate, novel, and significant, with some advocates claiming paradigmatic status. Triangulation is an important component of mixed methods designs. Triangulation has its origins in attempts to validate research findings…

  15. A quantitative study of attitudes toward the research participation of adults with intellectual disability: Do stakeholders agree?

    Science.gov (United States)

    McDonald, Katherine E; Conroy, Nicole E; Olick, Robert S

    2017-12-13

    Attitudes toward the research participation of adults with intellectual disability inform research policy and practice, impact interest in and support for research participation, and promote or discourage the generation of new knowledge to promote health among adults with intellectual disability. Yet we know little about these beliefs among the public and the scientific community. We quantitatively studied attitudes among adults with intellectual disability, family and friends, disability service providers, researchers, and Institutional Review Board (IRB) members. We predicted that adults with intellectual disability, and researchers would espouse views most consistent with disability rights, whereas IRB members, and to a lesser degree family, friends, and service providers, would espouse more protective views. We surveyed five hundred and twelve members of the five participant stakeholder groups on their attitudes toward the research participation of adults with intellectual disability. We found broad support for research about people with intellectual disability, though slightly more tempered support for their direct participation therein. In general, IRB members and to some extent adults with intellectual disability endorsed direct participation less than others. We also found that adults with intellectual disability strongly believed in their consent capacity. Resources should be directed toward health-related research with adults with intellectual disability, and interventions should be pursued to address ethical challenges and promote beliefs consistent with human rights. Copyright © 2017 Elsevier Inc. All rights reserved.

  16. Research on radiation effect and radiation protection at JAEA

    International Nuclear Information System (INIS)

    Saito, Kimiaki

    2007-01-01

    Researches on radiation effect and radiation protection at JAEA have been carried out in different sections. In recent years, the organizations were rearranged to attain better research circumstances, and new research programs started. At present, radiation effect studies focus on radiation effect mechanisms at atomic, molecular and cellular levels including simulation studies, and protection studies focus on dosimetry for conditions difficult to cover with currently used methods and data as well as the related basic studies. The outlines of the whole studies and also some descriptions on selected subjects will be given in this paper. (author)

  17. Northern Illinois U. students participate in particle research

    CERN Multimedia

    Goluszka, J

    2003-01-01

    University students are diligently working on a variety of high-tech research topics designed to improve digital technology. A typical project is "evaluating scintillation material for digital hadron calorimeters" (1 page).

  18. The Culture of Translational Science Research: Participants' Stories.

    Science.gov (United States)

    Kotarba, Joseph A; Wooten, Kevin; Freeman, Jean; Brasier, Allan R

    2013-01-01

    We apply a symbolic interactionist framework and a qualitative methodology to the examination of the everyday reality of translational science research (TSR). This is a growing scientific movement that aims to facilitate the efficient application of basic research to clinical service design and delivery. We describe the emerging culture of translational research at a mid-size medical center that received a Clinical and Translational Science Award from the National Institutes of Health. The stories related by scientists, clinicians, and students in interviews indicate that they make sense of the emerging inter- and cross-disciplinary, team-oriented culture of TSR through the refinement and redefinition of the significant symbols that inform their work while they attempt to master translational research by addressing the dilemmas it produces for them and their work. We see the strength, currency, adaptability, and energy of the core self-definition of "scientist" to be significant in shaping the emerging culture of translational research. We conclude by celebrating the value of interpretive ethnography for evaluation research.

  19. Acceptable respiratory protection program and LASL respirator research

    International Nuclear Information System (INIS)

    Skaggs, B.J.

    1979-01-01

    A short history is presented on the LASL Respiratory Protection Training Programs. Then a discussion is given on the major points of an acceptable respiratory protection program utilizing the points required by the Occupational, Safety, and Health Administration (OSHA) Regulation 29 CFR 1910.134. Contributions to respirator research are reviewed. Discussion is presented under the following section headings: program administration; respirator selection; respirator use; fitting and training; respirator maintenance; medical clearance and surveillance; special problems; program evaluation; and documentation

  20. New research on women's low participation in science and technology

    Science.gov (United States)

    Stout, Jane

    It is well known that women have historically been and continue to be grossly underrepresented in technical fields (i.e., the physical sciences, engineering, and computing). This presentation will address the following research questions: What dissuades women from entering into a technical career track, and what are women's experiences like within technical fields? At the same time, this presentation will acknowledge a shortcoming of decades of social science research and interventions designed to improve women's interest and persistence in technical fields: a narrow definition of ``women''. Given that the majority of women in colleges and universities (i.e., the typical sites of social science research) tend to be affluent and/or White, STEM education research that relies on convenience samples at colleges and universities paints a skewed picture of gender issues in technical fields. This presentation will showcase research findings that call into question conventional conceptions of gender disparities in technical fields. Specifically, the presentation will emphasize the importance of recognizing that women constitute more than their gender; women come from a diverse array of backgrounds, which no doubt play a role in the experience of being a woman in technical fields. By understanding the experiences of women from a broad array of demographics groups, the STEM education community can develop a corresponding set of strategies to recruit and retain women with diverse interests, experiences, and values (e.g., first generation versus second college students; women of different racial/ethnic backgrounds). The aim of this presentation is to promote social science research and interventions that acknowledge the nuanced experiences of diverse women in technical fields, in order to address the seemingly intractable problem of women's underrepresentation in technical fields. NSF DUE-1431112, NSF CNS-1246649.

  1. Researcher-participant positioning and the discursive work of categories

    DEFF Research Database (Denmark)

    Ringer, Agnes

    2013-01-01

    This paper reports on methodological experiences from an ethnographic study in psychiatric institutions in Denmark. Drawing on a poststructural framework and newer discussions within qualitative research that view methodological problems as sources of data, the paper analyzes how the challenges...... positions in between. At the same time, it is shown that the patients find ways to resist the objectifying practices of the researcher as well as of the mental health services. The conclusions are discussed against recent attempts within the mental health services to promote a more patient-centered approach...

  2. Some observations in university participation in nuclear engineering research

    International Nuclear Information System (INIS)

    Eickhoff, K.G.; Hill, K.M.

    1980-01-01

    A general discussion is presented on the kinds of problem which with suitable co-ordination would form appropriate topics for university research. R and D work can be done in-house, or with an industrial contractor, or with a university or polytechnic. The criteria are examined. Involvement by universities and polytechnics, and topics and location, are considered further. (U.K.)

  3. Participant Observation, Anthropology Methodology and Design Anthropology Research Inquiry

    Science.gov (United States)

    Gunn, Wendy; Løgstrup, Louise B.

    2014-01-01

    Within the design studio, and across multiple field sites, the authors compare involvement of research tools and materials during collaborative processes of designing. Their aim is to trace temporal dimensions (shifts/ movements) of where and when learning takes place along different sites of practice. They do so by combining participant…

  4. Listening to Children's Voices: Children as Participants in Research

    Science.gov (United States)

    McTavish, Marianne; Streelasky, Jodi; Coles, Linda

    2012-01-01

    Recently, researchers have begun to investigate the ways contemporary childhoods are being shaped by a range of multimodal communicative practices (Kress, "Literacy in the new media age," Routledge, New York, 2003; Lankshear and Knobel, "New literacies: Changing knowledge and classroom learning," Open University Press, Milton…

  5. PERCEIVED DISCOMFORT LEVELS IN HEALTHY CHILDREN PARTICIPATING IN VACCINE RESEARCH

    NARCIS (Netherlands)

    Westra, Anna E.; van Gils, Elske J. M.; Aarts, Fenne; Rodenburg, Gerwin D.; Veenhoven, Reinier H.; Hak, Eelko; Scharloo, Margreet; Sukhai, Ram N.; Wit, Jan M.; de Beaufort, Inez; Sanders, Elisabeth (Lieke) A. M.

    WHEN ASSESSING THE RISKS OF A research protocol, review boards need to consider not only the possible harms but also the expected discomfort levels caused by the various study procedures. However, data on how children experience various study procedures are scarce. This study assessed perceived

  6. Multimodality and Children's Participation in Classrooms: Instances of Research

    Science.gov (United States)

    Newfield, Denise

    2011-01-01

    This paper describes how language and literacy classrooms became more participatory, agentive spaces through addressing a central issue in teaching and learning: the forms of representation through which children make their meanings. It reconsiders pedagogic research in under-resourced Gauteng classrooms during the period 1994-2005, during the…

  7. Accreditation of human research protection program: An Indian perspective

    Directory of Open Access Journals (Sweden)

    K L Bairy

    2012-01-01

    Full Text Available With the increasing number of clinical trials being placed in India, it is the collective responsibility of the Investigator sites, Government, Ethics Committees, and Sponsors to ensure that the trial subjects are protected from risks these studies can have, that subjects are duly compensated, and credible data generated. Most importantly, each institution/hospital should have a strong Human Research Protection Program to safe guard the trial subjects. In order to look at research with a comprehensive objective approach, there is a need for a formal auditing and review system by a recognized body. As of now, only the sponsors are monitoring/auditing their respective trials; however, there is an increasing need to perform a more detailed review and assessment of processes of the institution and the Ethics Committee. This challenge can be addressed by going for accreditation by a reputed association that encompasses-the institutions, the ethics committees, and researcher/research staff. Starting their journey for the accreditation process in late 2010, Kasturba Medical College and Hospital [KMC], Manipal, and Manipal Hospital Bangalore [MHB] received full Association for the Accreditation of Human Research Protection Programs (AAHRPP accreditation in Dec 2011-a first in India. This article delves into the steps involved in applying for AAHRPP accreditation from an Indian Perspective, the challenges, advantages, and testimonials from the two hospitals on the application experience and how the accreditation has improved the Human Research Protection Program at these hospitals.

  8. A survey of research programs in radiation protection in Canada

    Energy Technology Data Exchange (ETDEWEB)

    NONE

    1995-07-01

    A survey of research programs in Canada concerned with radiation protection was conducted in 1991-92 by the Joint Subcommittee on Regulatory Research (JSCRR) of the Atomic Energy Control Board (AECB) Advisory Committees on Radiological Protection and on Nuclear Safety. The purpose of this survey was to determine the current state of funding for this type of research in Canada. Funding for health-related radiation research in Canada is critical to establishing and maintaining a supply of trained professionals who can provide competent advice on health-related problems in radiation protection. The present report is an analysis of the information received in this survey. This survey concludes with the recommendation that the organization and definition of subprograms for the AECB Regulatory Research and Support Program should be completed as soon as possible. In this report the JSCRR should assist AECB staff in preparing a report in which priorities for research related to radiation protection are indicated. The sources of information noted at the end of the Discussion section of this report should be considered for this purpose. (author). 15 refs., 3 tabs.

  9. A survey of research programs in radiation protection in Canada

    International Nuclear Information System (INIS)

    1995-07-01

    A survey of research programs in Canada concerned with radiation protection was conducted in 1991-92 by the Joint Subcommittee on Regulatory Research (JSCRR) of the Atomic Energy Control Board (AECB) Advisory Committees on Radiological Protection and on Nuclear Safety. The purpose of this survey was to determine the current state of funding for this type of research in Canada. Funding for health-related radiation research in Canada is critical to establishing and maintaining a supply of trained professionals who can provide competent advice on health-related problems in radiation protection. The present report is an analysis of the information received in this survey. This survey concludes with the recommendation that the organization and definition of subprograms for the AECB Regulatory Research and Support Program should be completed as soon as possible. In this report the JSCRR should assist AECB staff in preparing a report in which priorities for research related to radiation protection are indicated. The sources of information noted at the end of the Discussion section of this report should be considered for this purpose. (author). 15 refs., 3 tabs

  10. Broadening Participation in the Geosciences through Participatory Research

    Science.gov (United States)

    Pandya, R. E.; Hodgson, A.; Wagner, R.; Bennett, B.

    2009-12-01

    In spite of many efforts, the geosciences remain less diverse than the overall population of the United States and even other sciences. This lack of diversity threatens the quality of the science, the long-term viability of our workforce, and the ability to leverage scientific insight in service of societal needs. Drawing on new research into diversity specific to geosciences, this talk will explore underlying causes for the lack of diversity in the atmospheric and related sciences. Causes include the few geoscience majors available at institutions with large minority enrollment; a historic association of the geosciences with extractive industries which are negatively perceived by many minority communities, and the perception that science offers less opportunity for service than other fields. This presentation suggests a new approach - community-based participatory research (CBPR). In CBPR, which was first applied in the field of rural development and has been used for many years in biomedical fields, scientists and community leaders work together to design a research agenda that simultaneously advances basic understanding and addresses community priorities. Good CBPR integrates research, education and capacity-building. A CBRP approach to geoscience can address the perceived lack of relevance and may start to ameliorate a history of negative experiences of geosciences. Since CBPR works best when it is community-initiated, it can provide an ideal place for Minority-Serving Institutions to launch their own locally-relevant programs in the geosciences. The presentation will conclude by describing three new examples of CBPR. The first is NCAR’s partnerships to explore climate change and its impact on Tribal lands. The second approach a Denver-area listening conference that will identify and articulate climate-change related priorities in the rapidly-growing Denver-area Latino community. Finally, we will describe a Google-funded project that brings together

  11. Strong preference for mint snus flavor among research participants

    Directory of Open Access Journals (Sweden)

    Liane M. Schneller

    2017-12-01

    Full Text Available Introduction: The Family Smoking Prevention and Tobacco Control Act of 2009 allows the US FDA to regulate tobacco products, including the banning of characterizing flavors, such as fruit and candy, cigarettes. The availability of mint flavored snus may facilitate the use of the product if consumers find it more palatable with respect to taste, odor, pleasantness, and intensity. Methods: This study assessed product evaluation (PES, odor identification, odor intensity, and odor hedonics among 151 smokers enrolled in a clinical trial of snus substitution for cigarettes. Results: Far more participants selected Winterchill (N=110 than Robust (N=41, regardless of their menthol cigarette smoking status. Nicotine dependence was higher among those who selected Winterchill (4 vs 3 on Fagerstrom scale, p=0.017. Those who found Winterchill to be more satisfying, less aversive, and having a more intense, more pleasant odor than Robust were substantially more likely to select Winterchill for their one week trial. Conclusions: Findings indicate that subjective effect measures such as the PES and DEQ are capable of differentiating products in terms of flavor preference, and that smokers express a strong preference for mint flavored snus.

  12. Addressing female genital mutilation in Europe: a scoping review of approaches to participation, prevention, protection, and provision of services.

    Science.gov (United States)

    Baillot, Helen; Murray, Nina; Connelly, Elaine; Howard, Natasha

    2018-02-08

    Public and policy attention to female genital mutilation (FGM) in diaspora communities has increased in Europe, but research remains limited and misinformation abounds. As a first step to addressing these issues, this study explored FGM prevention and response interventions in Europe, using a scoping literature review and key informant interviews. A scoping study design was selected, using Arksey and O'Malley's six-stage scoping framework to review identified sources. Key informant interviews were used to inform and add depth to literature findings. Findings were summarised thematically, guided by the Scottish Government's '4Ps' framework for tackling violence against women (i.e. participation, prevention, protection, providing services). Seventy literature sources, of 1095 screened, plus 16 individual and 3 group interview sources were included. Several countries have developed promising interventions supporting FGM resistance and recovery. However, gaps remain including community participation, professional knowledge and linkages, and evaluation of approaches. This scoping review is an initial attempt to describe available primary evidence on European initiatives responding to FGM. Further research is required to determine whether interventions are effective, while policy and practice development must be shaped and driven by the experiences, needs, and views of affected communities.

  13. 76 FR 44512 - Human Subjects Research Protections: Enhancing Protections for Research Subjects and Reducing...

    Science.gov (United States)

    2011-07-26

    ... regulatory requirements that can apply to a single research study have been criticized as complex... research studies, as follows: 1. The highest level of review, applied to most studies involving more than... long-range effects of applying knowledge gained in the research (for example, the possible effects of...

  14. Home-Schools and Interscholastic Sports: Denying Participation Violates United States Constitutional Due Process and Equal Protection Rights. Chalk Talk.

    Science.gov (United States)

    Webb, Derwin L.

    1997-01-01

    Participation in sports, in some instances, is considered a right which grants students the opportunity to be involved in extracurricular activities. Discusses the potential violation of home-schooled students' constitutional due process and equal protection rights and the pertinent laws regarding students and their ability to participate in…

  15. When Is Sport Participation Risky or Protective for Alcohol Use? The Role of Teammates, Friendships, and Popularity

    Science.gov (United States)

    Vest, Andrea E.; Simpkins, Sandra D.

    2013-01-01

    Little is known about how adolescents' peer relations might alter whether sport participation is associated with alcohol use. Consistent with social learning theory, we found that sport participation was protective against alcohol use if these peers had low alcohol use, but athletes were likely to use alcohol if their sport friends and teammates…

  16. Moving beyond 'not enough time': factors influencing paediatric clinicians' participation in research.

    Science.gov (United States)

    Paget, Simon P; Caldwell, Patrina H Y; Murphy, Joyce; Lilischkis, Kimberley J; Morrow, Angie M

    2017-03-01

    Increasing the amount of clinical research that occurs in healthcare settings has been identified as an important mechanism to improve healthcare outcomes. While clinicians are key persons in achieving this aim, research participation amongst clinicians is generally limited. To identify the factors (barriers and facilitators) influencing clinician research participation and determine how professional culture impacts on these factors. Forty clinicians working at a tertiary children's hospital participated in six discipline-specific focus groups. Thematic analysis was performed using an inductive process based in grounded theory. Four major themes (cultural factors, personal factors, resources and solutions) and 16 subthemes were identified. Participants described how the current health system discourages clinician research. They reported that their research participation requires personal sacrifice of their own time; income or career progression. Research participation was seen to compete with other priorities in clinicians' workload and is disadvantaged because of the primacy of clinical work and the lack of immediate tangible benefit from research projects. Solutions suggested by our participants included better alignment of clinical and research goals, improved availability of research mentors and collaborative opportunities. Nurses and allied health professionals reported a changing professional culture that values research. Only doctors identified research participation to be important for career progression. For clinician research participation to flourish, significant changes in healthcare structure and priorities will be required that result in research becoming more embedded in healthcare delivery. Initiatives to improve collaboration between clinicians and universities may also support these aims. © 2016 Royal Australasian College of Physicians.

  17. The willingness to participate in health research studies of individuals with Turkish migration backgrounds: barriers and resources.

    Science.gov (United States)

    Dingoyan, D; Schulz, H; Mösko, M

    2012-06-01

    Lower participation rates of ethnic minorities in health research studies and potential participation barriers are commonly reported. Four semi-structured focus groups of individuals with Turkish migration backgrounds living in Germany were conducted to identify potential participation barriers. Documented statements and superscripted presentation cards by the participants were evaluated with a qualitative content analysis. The following eight potential reasons for the lower participation rates were identified: role of women, lack of knowledge, lack of interest, German-Turkish interactions, mistrust, anxiety, data privacy protection and benefits of the study. Additionally, the following recruitment strategies to enhance participation rates were found: public relations, especially word-of-mouth promotion and contacting Turkish key figures, (non-) tangible incentives and trust building through transparent communication of the project and its conditions. The findings provide a wide range of potential participation barriers and implications that should be considered to enhance the participation rates of minority populations. The willingness to participate in health research studies can be increased through particular efforts, which should be tailored to the recruitment of the underrepresented target population. Copyright © 2012 Elsevier Masson SAS. All rights reserved.

  18. Physical protection of radioactive materials in a University Research Institute

    International Nuclear Information System (INIS)

    Boeck, H.

    1998-01-01

    Although nuclear research centers attached to universities usually do not keep large inventories of radioactive or special nuclear material, the mentioned material has still to be under strict surveillance and safeguards if applicable. One problem in such research centers is the large and frequent fluctuation of persons - mainly students, scientists or visiting guest scientists - using such materials for basic or applied research. In the present paper an overview of protective actions in such a research institute will be given and experience of more than 36 years will be presented. (author)

  19. Critical Issues in Radiation Protection Knowledge Management for Preserving Radiation Protection Research and Development Capabilities.

    Science.gov (United States)

    Dewji, Shaheen Azim

    2017-02-01

    As a hub of domestic radiation protection capabilities, Oak Ridge National Laboratory's Center for Radiation Protection Knowledge has a mandate to develop and actuate a formal knowledge management (KM) effort. This KM approach exceeds recruitment and training efforts but focuses on formalized strategies for knowledge transfer from outgoing subject matter experts in radiation protection to incoming generations. It is envisioned that such an effort will provide one avenue for preserving domestic capabilities to support stakeholder needs in the federal government and the nuclear industry while continuing to lead and innovate in research and development on a global scale. However, in the absence of broader coordination within the United States, preservation of radiation protection knowledge continues to be in jeopardy in the absence of a dedicated KM effort.

  20. Critical issues in radiation protection knowledge management for preserving radiation protection research and development capabilities

    International Nuclear Information System (INIS)

    Dewji, Shaheen Azim

    2017-01-01

    As a hub of domestic radiation protection capabilities, Oak Ridge National Laboratory’s Center for Radiation Protection Knowledge has a mandate to develop and actuate a formal knowledge management (KM) effort. This KM approach exceeds recruitment and training efforts but focuses on formalized strategies for knowledge transfer from outgoing subject matter experts in radiation protection to incoming generations. It is envisioned that such an effort will provide one avenue for preserving domestic capabilities to support stakeholder needs in the federal government and the nuclear industry while continuing to lead and innovate in research and development on a global scale. Furthermore, in the absence of broader coordination within the United States, preservation of radiation protection knowledge continues to be in jeopardy in the absence of a dedicated KM effort.

  1. Research explores links between social protection and poverty ...

    International Development Research Centre (IDRC) Digital Library (Canada)

    Their research is contributing to the debate on the role of social protection and ... It stresses the relevance of cash-transfer programs on inequality and poverty ... is the focus of a recent article in The Economist that builds on Gasparini's work.

  2. Use of community engagement strategies to increase research participation in practice-based research networks (PBRNs).

    Science.gov (United States)

    Spears, William; Tsoh, Janice Y; Potter, Michael B; Weller, Nancy; Brown, Anthony E; Campbell-Voytal, Kimberly; Getrich, Christina M; Sussman, Andrew L; Pascoe, John; Neale, Anne Victoria

    2014-01-01

    Practice-based research networks (PBRNs) are increasingly encouraged to use community engagement approaches. The extent to which PBRNs engage clinic and community partners in strategies to recruit and retain participants from their local communities (specifically racial/ethnic communities) is the focus of this study. The design was a cross-sectional survey of PBRN directors in the United States. Survey respondents indicated whether their research network planned for, implemented, and has capacity for activities that engage clinic and community partners in 7 recommended strategies organized into study phases, called the cycle of trust. The objectives of the national survey were to (1) describe the extent to which PBRNs across the United States routinely implement the strategies recommended for recruiting diverse patient groups and (2) identify factors associated with implementing the recommended strategies. The survey response rate was 63%. Activities that build trust often are used more with clinic partners than with community partners. PBRNs that adopt engagement strategies when working with clinic and community partners have less difficulty in recruiting diverse populations. Multivariate analysis showed that the targeting racial/ethnic communities for study recruitment, Clinical and Translational Science Award affiliation, and planning to use community engagement strategies were independent correlates of PBRN implementation of the recommended strategies. PBRNs that successfully engage racial/ethnic communities as research partners use community engagement strategies. New commitments are needed to support PBRN researchers in developing relationships with the communities in which their patients live. Stable PBRN infrastructure funding that appreciates the value of maintaining community engagement between funded studies is critical to the research enterprise that values translating research findings into generalizable care models for patients in the community.

  3. U.S. Department of Energy student research participation programs. Underrepresented minorities in U.S. Department of Energy student research participation programs

    Energy Technology Data Exchange (ETDEWEB)

    NONE

    1996-03-01

    The purpose of this study was to identify those particular aspects of US Department of Energy (DOE) research participation programs for undergraduate and graduate students that are most associated with attracting and benefiting underrepresented minority students and encouraging them to pursue careers in science, engineering, and technology. A survey of selected former underrepresented minority participants, focus group analysis, and critical incident analysis serve as the data sources for this report. Data collected from underrepresented minority participants indicate that concerns expressed and suggestions made for conducting student research programs at DOE contractor facilities are not remarkably different from those made by all participants involved in such student research participation programs. With the exception of specific suggestions regarding recruitment, the findings summarized in this report can be interpreted to apply to all student research participants in DOE national laboratories. Clearly defined assignments, a close mentor-student association, good communication, and an opportunity to interact with other participants and staff are those characteristics that enhance any educational program and have positive impacts on career development.

  4. Review of existing issues, ethics and practices in general medical research and in radiation protection research

    International Nuclear Information System (INIS)

    Schreiner-Karoussou, A.

    2008-01-01

    A literature review was carried out in relation to general medical research and radiation protection research. A large number of documents were found concerning the subject of ethics in general medical research. For radiation protection research, the number of documents and the information available is very limited. A review of practices in 13 European countries concerning general medical research and radiation protection research was carried out by sending a questionnaire to each country. It was found that all countries reviewed were well regulated for general medical research. For research that involves ionising radiation, the UK and Ireland are by far the most regulated countries. For other countries, there does not seem to be much information available. From the literature review and the review of practices, a number of existing ethical issues were identified and exposed, and a number of conclusions were drawn. (authors)

  5. Protecting animals and enabling research in the European Union

    DEFF Research Database (Denmark)

    Olsson, I. Anna S.; Pinto da Silva, Sandra; Townend, David

    2016-01-01

    In 1986, European Directive 86/609/EEC, regulating the use of animals in research, was one of the first examples of common legislation to set standards for animal protection across the Member States of the former European Economic Community, now the European Union, with the aim of securing a level...... objectives of the directive, particularly with a focus on securing the same high standards of animal protection across member countries. The analysis focuses on three separate issues: (1) minimum standards for laboratory animal housing and care, (2) restrictions on the use of certain animal species, and (3...

  6. Effectiveness of Human Research Protection Program Performance Measurements.

    Science.gov (United States)

    Tsan, Min-Fu; Nguyen, Yen

    2017-10-01

    We analyzed human research protection program performance metric data of all Department of Veterans Affairs research facilities obtained from 2010 to 2016. Among a total of 25 performance metrics, 21 (84%) showed improvement, four (16%) remained unchanged, and none deteriorated during the study period. The overall improvement from these 21 performance metrics was 81.1% ± 18.7% (mean ± SD), with a range of 30% to 100%. The four performance metrics that did not show improvement all had initial noncompliance/incidence rates of performance metrics that showed improvement ranged from 0.05% to 60%. However, of the 21 performance metrics that showed improvement, 10 had initial noncompliance/incidence rates of performance measurement is an effective tool in improving the performance of human research protection programs.

  7. Privacy and ethics in pediatric environmental health research-part II: protecting families and communities.

    Science.gov (United States)

    Fisher, Celia B

    2006-10-01

    In pediatric environmental health research, information about family members is often directly sought or indirectly obtained in the process of identifying child risk factors and helping to tease apart and identify interactions between genetic and environmental factors. However, federal regulations governing human subjects research do not directly address ethical issues associated with protections for family members who are not identified as the primary "research participant." Ethical concerns related to family consent and privacy become paramount as pediatric environmental health research increasingly turns to questions of gene-environment interactions. In this article I identify issues arising from and potential solutions for the privacy and informed consent challenges of pediatric environmental health research intended to adequately protect the rights and welfare of children, family members, and communities. I first discuss family members as secondary research participants and then the specific ethical challenges of longitudinal research on late-onset environmental effects and gene-environment interactions. I conclude with a discussion of the confidentiality and social risks of recruitment and data collection of research conducted within small or unique communities, ethnic minority populations, and low-income families. The responsible conduct of pediatric environmental health research must be conceptualized as a goodness of fit between the specific research context and the unique characteristics of subjects and other family stakeholders.

  8. Radiation risk statement in the participant information for a research protocol that involves exposure to ionising radiation

    International Nuclear Information System (INIS)

    Caon, Martin

    2005-01-01

    A Human Research Ethics Committee (HREC) is required to scrutinise the protocols of clinical drug trials that recruit patients as participants. If the study involves exposing the participants to ionizing radiation the information provided to the participant should contain a radiation risk statement that is understandable by the Committee and the participant. The information that should be included in the risk statement is available from a variety of published sources and is discussed. The ARPANSA Code of Practice Exposure of Humans to Ionizing Radiation for Research Purposes (2005) states explicitly what the responsibilities of the researcher and the HREC are. Some research protocols do not provide the information required by good radiation protection practice and explicitly called for by the Code. Nine points (including: state that ionizing radiation is involved; that the radiation is additional to standard care; the effective dose to be received; the dose compared to natural background; the dose to the most exposed organs; a statement of risk; the benefits accruing from the exposure; ask the participant about previous exposures; name a contact person from whom information may be sought) that should be considered for inclusion in the participant information are presented and discussed. An example of a radiation risk statement is provided

  9. SecureMA: protecting participant privacy in genetic association meta-analysis.

    Science.gov (United States)

    Xie, Wei; Kantarcioglu, Murat; Bush, William S; Crawford, Dana; Denny, Joshua C; Heatherly, Raymond; Malin, Bradley A

    2014-12-01

    Sharing genomic data is crucial to support scientific investigation such as genome-wide association studies. However, recent investigations suggest the privacy of the individual participants in these studies can be compromised, leading to serious concerns and consequences, such as overly restricted access to data. We introduce a novel cryptographic strategy to securely perform meta-analysis for genetic association studies in large consortia. Our methodology is useful for supporting joint studies among disparate data sites, where privacy or confidentiality is of concern. We validate our method using three multisite association studies. Our research shows that genetic associations can be analyzed efficiently and accurately across substudy sites, without leaking information on individual participants and site-level association summaries. Our software for secure meta-analysis of genetic association studies, SecureMA, is publicly available at http://github.com/XieConnect/SecureMA. Our customized secure computation framework is also publicly available at http://github.com/XieConnect/CircuitService. © The Author 2014. Published by Oxford University Press. All rights reserved. For Permissions, please e-mail: journals.permissions@oup.com.

  10. Decision making process and factors contributing to research participation among general practitioners: A grounded theory study.

    Science.gov (United States)

    Tong, Seng Fah; Ng, Chirk Jenn; Lee, Verna Kar Mun; Lee, Ping Yein; Ismail, Irmi Zarina; Khoo, Ee Ming; Tahir, Noor Azizah; Idris, Iliza; Ismail, Mastura; Abdullah, Adina

    2018-01-01

    The participation of general practitioners (GPs) in primary care research is variable and often poor. We aimed to develop a substantive and empirical theoretical framework to explain GPs' decision-making process to participate in research. We used the grounded theory approach to construct a substantive theory to explain the decision-making process of GPs to participate in research activities. Five in-depth interviews and four focus group discussions were conducted among 21 GPs. Purposeful sampling followed by theoretical sampling were used to attempt saturation of the core category. Data were collected using semi-structured open-ended questions. Interviews were recorded, transcribed verbatim and checked prior to analysis. Open line-by-line coding followed by focus coding were used to arrive at a substantive theory. Memoing was used to help bring concepts to higher abstract levels. The GPs' decision to participate in research was attributed to their inner drive and appreciation for primary care research and their confidence in managing their social and research environments. The drive and appreciation for research motivated the GPs to undergo research training to enhance their research knowledge, skills and confidence. However, the critical step in the GPs' decision to participate in research was their ability to align their research agenda with priorities in their social environment, which included personal life goals, clinical practice and organisational culture. Perceived support for research, such as funding and technical expertise, facilitated the GPs' participation in research. In addition, prior experiences participating in research also influenced the GPs' confidence in taking part in future research. The key to GPs deciding to participate in research is whether the research agenda aligns with the priorities in their social environment. Therefore, research training is important, but should be included in further measures and should comply with GPs' social

  11. The competent person in radiation protection: practical radiation protection for industry and research - unsealed sources

    International Nuclear Information System (INIS)

    Bruchet, H.

    2009-01-01

    The mission of the competent person in radiation protection has been broadly developed these last years to take an essential function in firm:study of working place, delimitation of regulated areas, monitoring of exposure, relations with authorities. The competent person in radiation protection must follow a training, defined by decree and shared in two parts: a theoretical part used as compulsory subjects and a practical part specific to the different sectors of activity (research, industry, medical centers, nuclear facilities) as well as the radiation use type. This volume corresponds to the practical module devoted to the industrial and research facilities concerned by the possession of management of sealed or unsealed sources. In accordance with the regulations stipulating that this module must allow to apply the theoretical knowledge to concrete situations in work. It includes eight chapters as following: radiation protection in industrial and research facilities, use of sources and associated risks, fitting out professional premises, evaluation of exposure, control of radiation protection; use of detection equipment and radioactive contamination and exposure measurement equipment, associated to methods and calculation tools; radioactive waste management; accidental or damaged situations management; methodology of working place analysis completed by the application to practical cases found in laboratories. (N.C.)

  12. Sexual and Gender Minority Adolescents' Views On HIV Research Participation and Parental Permission: A Mixed-Methods Study.

    Science.gov (United States)

    Mustanski, Brian; Coventry, Ryan; Macapagal, Kathryn; Arbeit, Miriam R; Fisher, Celia B

    2017-06-01

    Sexual and gender minority adolescents are underrepresented in HIV research, partly because institutional review boards (IRBs) are reluctant to waive parental permission requirements for these studies. Understanding teenagers' perspectives on parental permission and the risks and benefits of participating in HIV research is critical to informing evidence-based IRB decisions. Data from 74 sexual and gender minority adolescents aged 14-17 who participated in an online focus group in 2015 were used to examine perspectives on the risks and benefits of participation in a hypothetical HIV surveillance study and the need for parental permission and adequate protections. Data were analyzed thematically; mixed methods analyses examined whether concerns about parental permission differed by whether teenagers were out to their parents. Most adolescents, especially those who were not out to their parents, would be unwilling to participate in an HIV study if parental permission were required. Perceived benefits of participation included overcoming barriers to HIV testing and contributing to the health of sexual and gender minority youth. Few risks of participation were identified. Adolescents suggested steps that researchers could take to facilitate informed decision making about research participation and ensure minors' safety in the absence of parental permission; these included incorporating multimedia presentations into the consent process and explaining researchers' motivations for conducting the study. Respondents believed that the benefits of HIV surveillance research outweighed the risks. Requiring parental permission may exclude many sexual and gender minority teenagers from taking part in HIV research, especially if they are not out. Copyright © 2017 by the Guttmacher Institute.

  13. A Research on Enterprise Patent Protection and Innovation Strategy

    Institute of Scientific and Technical Information of China (English)

    Zeng Sumei

    2017-01-01

    In the 21st century, high-tech serves as the foundation of competitiveness for the whole world, at the same time, intellectual property, especially the patent has become an effective means for an enterprise to participate in the international competition, and intellectual property is also the key strategic resource to gain competitive advantage. In effect, the competition amongst enterprises is mainly concerning the competition of patent technology. Those enterprises with a large number of high level professional powers gain the initiative edge of survival. Therefore, it is vital for the enterprise to adopt the patent protection and innovation strategy, so as to elevate the survival ability and competitiveness of an enterprise.

  14. Strategies to successfully recruit and engage clinical nurses as participants in qualitative clinical research.

    Science.gov (United States)

    Coyne, Elisabeth; Grafton, Eileen; Reid, Alayne

    2016-12-01

    Research conducted in the clinical area promotes the delivery of evidence-based patient care. Involving nurses as participants in research is considered essential to link patient care with evidence-based interventions. However recruitment is influenced by nurses' competing demands and understanding engagement strategies may assist future research. This reflective analysis aimed to understand influencing factors and strategies that support successful recruitment nurses in clinical research. A reflective analysis of research notes and focus group data from research with oncology nurses was completed. This research identified that gaining support from key staff, understanding work constraints and developing a rapport with nurses is important. Establishing clear relevance and benefits of the research and being flexible with research requirements enabled nurses to participate in the research. Clear information and a willingness to accommodate the demands and dynamic nature of the environment, ensures ongoing support and engagement of nurses in the clinical setting as participants in research.

  15. Psychological, behavioral and social effects of disclosing Alzheimer's disease biomarkers to research participants: a systematic review

    NARCIS (Netherlands)

    Bemelmans, S.A.S.A.; K. Tromp (Krista); E.M. Bunnik (Eline); Milne, R.J.; Badger, S.; C. Brayne (Carol); M.H.N. Schermer (Maartje); Richard, E.

    2016-01-01

    textabstractBackground: Current Alzheimer's disease (AD) research initiatives focus on cognitively healthy individuals with biomarkers that are associated with the development of AD. It is unclear whether biomarker results should be returned to research participants and what the psychological,

  16. Psychological, behavioral and social effects of disclosing Alzheimer's disease biomarkers to research participants: a systematic review

    NARCIS (Netherlands)

    Bemelmans, S.AS.A.; Tromp, K.; Bunnik, E.M.; Milne, R.J.; Badger, S.; Brayne, C.; Schermer, M.H.; Richard, E.

    2016-01-01

    BACKGROUND: Current Alzheimer's disease (AD) research initiatives focus on cognitively healthy individuals with biomarkers that are associated with the development of AD. It is unclear whether biomarker results should be returned to research participants and what the psychological, behavioral and

  17. Psychological, behavioral and social effects of disclosing Alzheimer's disease biomarkers to research participants : A systematic review

    NARCIS (Netherlands)

    Bemelmans, S.A.; K. Tromp (Krista); E.M. Bunnik (Eline); Milne, R.J.; Badger, S.; C. Brayne (Carol); M.H.N. Schermer (Maartje); E. Richard (Edo)

    2016-01-01

    markdownabstractBACKGROUND: Current Alzheimer's disease (AD) research initiatives focus on cognitively healthy individuals with biomarkers that are associated with the development of AD. It is unclear whether biomarker results should be returned to research participants and what the psychological,

  18. A partnership model for a reflective narrative for researcher and participant.

    Science.gov (United States)

    Murphy, Gill; Peters, Kath; Wilkes, Lesley; Jackson, Debra

    2016-09-01

    Background Conceptual frameworks are important to ensure a clear underpinning research philosophy. Further, the use of conceptual frameworks can support structured research processes. Aim To present a partnership model for a reflective narrative for researcher and participant. Discussion This paper positions the underpinning philosophical framework of the model in social constructionism (the idea that jointly constructed understandings form the basis for shared assumptions) and narrative enquiry. The model has five stages - study design, invitation to share a research space and partnership, a metaphorical research space, building a community story, and reading the community story to others. Core principles of the partnership model are continual reflection by the researcher, potential reflections by participants, reciprocal sharing, and partnership in research. Conclusion A 'trajectory of self' for both participants and researchers can be enhanced within reflective partnerships. Implications for practice This model can be applied to studies that use narrative enquiry and are seeking a humanistic approach with participant engagement.

  19. Pharmacists' views on involvement in pharmacy practice research: Strategies for facilitating participation.

    Science.gov (United States)

    Armour, Carol; Brillant, Martha; Krass, Ines

    2007-01-01

    In order for community pharmacy practice to continue to evolve, pharmacy practice research on potential new services is essential. This requires the active participation of community pharmacists. At present the level of involvement of community pharmacists in pharmacy practice research is minimal. To ascertain the attitudes of a group of research-experienced community pharmacists towards participating in research; to investigate the barriers and facilitators to participation; to identify potential strategies to increase the involvement of community pharmacists in research. A focus group was conducted with a purposive sample of 11 research-experienced community pharmacists. A pharmacist academic moderated the focus group using a semi-structured interview guide. The participants were asked about their attitudes towards research, previous involvement in research, barriers to their involvement and strategies to overcome these barriers. The session was audio-taped and notes were taken by an observer. Thematic analysis of the notes and audio-tape transcripts was conducted. Three themes emerged around pharmacists' attitudes towards research: pharmacists' perception of the purpose of research, pharmacists' motivation for involvement in research, and pharmacists' desired role in research. Barriers to research participation were grouped into four themes: pharmacists' mindset, communication, infrastructure (time, money and staff), and skills/knowledge. Strategies to address each of these barriers were suggested. Participants recognised the importance of research towards advancing their profession and this was a motivating factor for involvement in research. They perceived their role in research primarily as data collection. A series of practical strategies to overcome the barriers to participation were offered that researchers may wish to consider when promoting research outcomes and designing research projects.

  20. Pharmacists’ views on involvement in pharmacy practice research: Strategies for facilitating participation.

    Directory of Open Access Journals (Sweden)

    Armour C

    2007-06-01

    Full Text Available In order for community pharmacy practice to continue to evolve, pharmacy practice research on potential new services is essential. This requires the active participation of community pharmacists. At present the level of involvement of community pharmacists in pharmacy practice research is minimal. Objectives: To ascertain the attitudes of a group of research-experienced community pharmacists towards participating in research; to investigate the barriers and facilitators to participation; to identify potential strategies to increase the involvement of community pharmacists in research. Methods: A focus group was conducted with a purposive sample of 11 research-experienced community pharmacists. A pharmacist academic moderated the focus group using a semi-structured interview guide. The participants were asked about their attitudes towards research, previous involvement in research, barriers to their involvement and strategies to overcome these barriers. The session was audio-taped and notes were taken by an observer. Thematic analysis of the notes and audio-tape transcripts was conducted.Results: Three themes emerged around pharmacists’ attitudes towards research: pharmacists’ perception of the purpose of research, pharmacists’ motivation for involvement in research, and pharmacists’ desired role in research. Barriers to research participation were grouped into four themes: pharmacists’ mindset, communication, infrastructure (time, money and staff, and skills/knowledge. Strategies to address each of these barriers were suggested.Conclusions: Participants recognised the importance of research towards advancing their profession and this was a motivating factor for involvement in research. They perceived their role in research primarily as data collection. A series of practical strategies to overcome the barriers to participation were offered that researchers may wish to consider when promoting research outcomes and designing research

  1. Radiation protection code of practice in academic and research institutes

    International Nuclear Information System (INIS)

    Abdalla, A. A. M.

    2010-05-01

    The main aim of this study was to establish a code of practice on radiation protection for safe control of radiation sources used in academic and research institutes, another aim of this study was to assess the current situation of radiation protection in some of the academic and research institutes.To achieve the aims of this study, a draft of a code of practice has been developed which is based on international and local relevant recommendation. The developed code includes the following main issues: regulatory responsibilities, radiation protection program and design of radiation installations. The second aim had been accomplished by conducting inspection visits to five (A, B, C, D and E) academic and to four (F, G, H and I ) research institutes. Eight of such institutes are located in Khartoum State and the ninth one is in Madani city (Aljazeera State). The inspection activities have been carried out using a standard inspection check list developed by the regulatory authority of the Sudan. The inspection missions to the above mentioned institutes involved also evaluation of radiation levels around the premises and storage areas of radiation sources. The dose rate measurement around radiation sources locations were found to be quite low. This mainly is due to the fact that the activities of most radionuclides that are used in these institutes are quite low ( in the range of micro curies). Also ,most the x-ray machines that were found in use for scientific academic and research purposes work at low k Vp of maximum 60 k Vp. None of the radiation workers in the inspected institutes has a personal radiation monitoring device, therefor staff dose levels have not been assessed. However it was noted that in most of the academic/ research studies radiation workers are only exposed to very low levels of radiation and for a very short time that dose not exceed 1 minute, therefore the expected occupational exposure of the staff is very low. Radiation measurement in public

  2. Participation in environmental health research by placenta donation - a perception study.

    Science.gov (United States)

    Lind, Uffe; Mose, Tina; Knudsen, Lisbeth E

    2007-11-22

    Much environmental health research depends on human volunteers participating with biological samples. The perception study explores why and how people participate in a placenta perfusion study in Copenhagen. The participation implies donation of the placenta after birth and some background information but no follow up. Nineteen semi-structured qualitative interviews were conducted with participants in the placenta perfusion study after donation of placenta. Observation studies were made of recruitment sessions. The interviewed participants are generally in favour of medical research. They participated in the placenta perfusion study due to a belief that societal progress follows medical research. They also felt that participating was a way of giving something back to the Danish health care system. The participants have trust in medical science and scientists, but trust is something which needs to be created through "trust-work". Face-to-face interaction, written information material and informed consent forms play important parts in creating trusting relationships in medical research. Medical research ethics do not only amount to specific types of written information material but should also be seen as a number of trust making performances involving researchers as well as research participants.

  3. Model Based Cyber Security Analysis for Research Reactor Protection System

    International Nuclear Information System (INIS)

    Sho, Jinsoo; Rahman, Khalil Ur; Heo, Gyunyoung; Son, Hanseong

    2013-01-01

    The study on the qualitative risk due to cyber-attacks into research reactors was performed using bayesian Network (BN). This was motivated to solve the issues of cyber security raised due to digitalization of instrumentation and control (I and C) system. As a demonstrative example, we chose the reactor protection system (RPS) of research reactors. Two scenarios of cyber-attacks on RPS were analyzed to develop mitigation measures against vulnerabilities. The one is the 'insertion of reactor trip' and the other is the 'scram halt'. The six mitigation measures are developed for five vulnerability for these scenarios by getting the risk information from BN

  4. Ethics is for human subjects too: participant perspectives on responsibility in health research.

    Science.gov (United States)

    Cox, Susan M; McDonald, Michael

    2013-12-01

    Despite the significant literature as well as energy devoted to ethical review of research involving human subjects, little attention has been given to understanding the experiences of those who volunteer as human subjects. Why and how do they decide to participate in research? Is research participation viewed as a form of social responsibility or as a way of obtaining individual benefits? What if anything do research subjects feel they are owed for participation? And what do they feel that they owe the researcher? Drawing on in-depth individual interviews conducted in 2006 and 2007 with 41 subjects who participated in a variety of types of health research in Canada, this paper focuses on subject perspectives on responsibility in research. Highlighting the range of ways that subjects describe their involvement in research and commitments to being a 'good' subject, we present a typology of narratives that sheds new light on the diverse meanings of research participation. These narratives are not mutually exclusive or prescriptive but are presented as ideal types typifying a set of circumstances and values. As such, they collectively illuminate a range of motivations expressed by human subjects as well as potential sources of vulnerability. The typology adds a new dimension to the literature in this area and has significant implications for researchers seeking more human-subject centred approaches to research recruitment and retention, as well as research ethics boards trying to better anticipate the perspectives of prospective participants. Copyright © 2013 Elsevier Ltd. All rights reserved.

  5. Heuristic decision-making about research participation in children with cystic fibrosis.

    Science.gov (United States)

    Christofides, Emily; Dobson, Jennifer A; Solomon, Melinda; Waters, Valerie; O'Doherty, Kieran C

    2016-08-01

    Traditional perspectives on informed consent assume that when faced with decisions about whether to participate in research, individuals behave according to principles of classical rationality, taking into account all available information to weigh risks and benefits to come to a decision that is optimal for them. However, theoretical and empirical research in psychology suggests that people may not make decisions in this way. Less is known about decision-making processes as they pertain to participating in biomedical research, particularly when the participants are children. We sought to better understand research decision processes especially in children who tend to participate extensively in research due to chronic illness. To learn more about children's decision-making in this context, we interviewed 19 young patients with cystic fibrosis (male n = 7; female n = 12) aged 8-18 years (M = 13 years) at a children's hospital in Canada between April and August 2013. We found that participants generally had a default approach to participation decisions, which they attributed to their parents' attitudes to research, experiences of having grown up participating in research, trusting the researchers, and wanting to help. Most of our participants made the decision to participate in research based on a heuristic with a baseline to say "yes", subject to change based on aspects of the research or particular preferences. In particular, concerns with the procedure, unwillingness to talk about cystic fibrosis, logistical challenges, and perceptions of risk all influenced the decision, as did the perceived importance or personal relevance of the research. Our study illustrates that rather than conducting risk/benefit analyses, participants tended to adopt a heuristic-like approach, consistent with decision theories that view heuristic decision-making as ecologically rational. Copyright © 2016 Elsevier Ltd. All rights reserved.

  6. HIV vaccine research--South Africa's ethical-legal framework and its ability to promote the welfare of trial participants.

    Science.gov (United States)

    Strode, Ann; Slack, Catherine; Mushariwa, Muriel

    2005-08-01

    An effective ethical-legal framework for the conduct of research is critical. We describe five essential components of such a system, review the extent to which these components have been realised in South Africa, present brief implications for the ethical conduct of clinical trials of HIV vaccines in South Africa and make recommendations. The components of an effective ethical-legal system that we propose are the existence of scientific ethical and policy-making structures that regulate research; research ethics committees (RECs) that ethically review research; national ethical guidelines and standards; laws protecting research participants; and mechanisms to enforce and monitor legal rights and ethical standards. We conclude that the ethical-legal framework has, for the most part, the necessary institutions, and certain necessary guidelines but does not have many of the laws needed to protect and promote the rights of persons participating in research, including HIV vaccine trials. Recommendations made include advocacy measures to finalise and implement legislation, development of regulations, analysis and comparison of ethical guidelines, and the development of measures to monitor ethical-legal rights at trial sites.

  7. Quantitative valuation placed by children and teenagers on participation in two hypothetical research scenarios.

    Science.gov (United States)

    Funnell, Dan; Fertleman, Caroline; Carrey, Liz; Brierley, Joe

    2012-11-01

    For paediatric medicine to advance, research must be conducted specifically with children. Concern about poor recruitment has led to debate about payments to child research participants. Although concerns about undue influence by such 'compensation' have been expressed, it is useful to determine whether children can relate the time and inconvenience associated with participation to the value of payment offered. This study explores children's ability to determine fair remuneration for research participation, and reviews payments to children participating in research. Forty children were interviewed before outpatient visits at two London Hospitals: Great Ormond Street Children's Hospital and the Whittington Hospital District General Hospital. Children were asked to value their involvement in two hypothetical research scenarios - the first an 'additional blood sample', the second also involving daily oral oil capsules taken for a fortnight before further venesection. Background knowledge about familiarity with money, and experience with hospitalisation was assessed. The mean valuation of involvement in the second scenario (£13.18) was higher than in the first (£2.84) (pfair valuation for participation in medical research. The monetary sums are influenced by the time and inconvenience involved in the research, and by the extent of recent experience with hospital procedures. The authors review current ethical thinking regarding payments to child research participants and suggest that a fair wage model might be an ethically acceptable way to increase participation of children in research.

  8. Key Stakeholders' Perceptions of Motivators for Research Participation Among Individuals Who Are Incarcerated.

    Science.gov (United States)

    Hanson, Bridget L; Faulkner, Sherilyn A; Brems, Christiane; Corey, Staci L; Eldridge, Gloria D; Johnson, Mark E

    2015-10-01

    Understanding motivations of research participants is crucial for developing ethical research protocols, especially for research with vulnerable populations. Through interviews with 92 institutional review board members, prison administrators, research ethicists, and researchers, we explored key stakeholders' perceptions of what motivates incarcerated individuals to participate in research. Primary motivators identified were a desire to contribute to society, gaining knowledge and health care, acquiring incentives, and obtaining social support. The potential for undue influence or coercion were also identified as motivators. These results highlight the need for careful analysis of what motivates incarcerated individuals to participate in research as part of developing or reviewing ethically permissible and responsible research protocols. Future research should expand this line of inquiry to directly include perspectives of incarcerated individuals. © The Author(s) 2015.

  9. Factors associated with willingness to participate in biospecimen research among Chinese Americans.

    Science.gov (United States)

    Gao, Wanzhen; Ma, Grace X; Tan, Yin; Fang, Carolyn; Weaver, JoEllen; Jin, Ming; Lai, Philip

    2014-04-01

    A paucity of information exists on the recruitment of Asian Americans for biospecimen research. Although studies show that Chinese Americans are at high risk for hepatitis B virus (HBV) infection, little is known about their willingness to participate in HBV-related biospecimen research and how knowledge, attitudes, and cultural factors impact their willingness to participate. The study was guided by Community-Based Participatory Research principles. Data were derived from an assessment study on HBV-related biospecimen research participation among Chinese Americans in the Philadelphia region. The assessment was conducted with 415 Chinese Americans recruited from eight Chinese community-based organizations. Cultural beliefs, knowledge, and attitudes toward biospecimen research were examined for associations with their willingness to participate in biospecimen banking research. Overall, 192 (46.3%) of 415 participants who completed the assessment indicated they were willing to participate if they were invited to donate blood to be frozen and stored for future HBV biospecimen studies. Cultural variables significant in bivariate analysis included collectivism, knowledge about biospecimen research, and Yin-Yang beliefs. Fatalism and individualism were not associated with participation willingness. In multivariate analysis, age, health care attitudes, and trust were significantly associated with willingness to participate in biospecimen banking research. Asian American communities have little knowledge of biospecimen banking and will benefit from educational campaigns that emphasize collective benefits and attitudes towards and trust in the health care system. Understanding cultural factors is important for improving Chinese Americans' knowledge, awareness, and intentions of participation in biospecimen research. Similar efforts need to be undertaken to develop culturally appropriate educational intervention programs to increase participation in biospecimen research

  10. Factors Associated with Willingness to Participate in Biospecimen Research Among Chinese Americans

    Science.gov (United States)

    Gao, Wanzhen; Tan, Yin; Fang, Carolyn; Weaver, JoEllen; Jin, Ming; Lai, Philip

    2014-01-01

    A paucity of information exists on the recruitment of Asian Americans for biospecimen research. Although studies show that Chinese Americans are at high risk for hepatitis B virus (HBV) infection, little is known about their willingness to participate in HBV-related biospecimen research and how knowledge, attitudes, and cultural factors impact their willingness to participate. The study was guided by Community-Based Participatory Research principles. Data were derived from an assessment study on HBV-related biospecimen research participation among Chinese Americans in the Philadelphia region. The assessment was conducted with 415 Chinese Americans recruited from eight Chinese community-based organizations. Cultural beliefs, knowledge, and attitudes toward biospecimen research were examined for associations with their willingness to participate in biospecimen banking research. Overall, 192 (46.3%) of 415 participants who completed the assessment indicated they were willing to participate if they were invited to donate blood to be frozen and stored for future HBV biospecimen studies. Cultural variables significant in bivariate analysis included collectivism, knowledge about biospecimen research, and Yin-Yang beliefs. Fatalism and individualism were not associated with participation willingness. In multivariate analysis, age, health care attitudes, and trust were significantly associated with willingness to participate in biospecimen banking research. Asian American communities have little knowledge of biospecimen banking and will benefit from educational campaigns that emphasize collective benefits and attitudes towards and trust in the health care system. Understanding cultural factors is important for improving Chinese Americans' knowledge, awareness, and intentions of participation in biospecimen research. Similar efforts need to be undertaken to develop culturally appropriate educational intervention programs to increase participation in biospecimen research

  11. Do people with intellectual disability require special human subjects research protections? The interplay of history, ethics, and policy.

    Science.gov (United States)

    Feudtner, Chris; Brosco, Jeffrey P

    2011-01-01

    People with intellectual disability (ID) have a long history of discrimination and stigmatization, and a more recent history of pride and self-advocacy. The early history suggests that people with ID are a vulnerable population and deserve special research protections as do some other groups; the disability rights movement of the late 20th century aligns people with ID more closely with the principle of autonomy that has guided clinical and research ethics for the last 40 years. In examining the history of people with ID and the prevailing framework of human subjects research protections in the United States, we conclude that people with ID do not require special protection in human subjects research. The protections that have already been put in place for all individuals, if conscientiously and effectively implemented, achieve the right balance between safeguarding the interest of human research subjects and empowering individuals who choose to do so to participate in research. Copyright © 2012 Wiley Periodicals, Inc.

  12. Views of potential research participants on financial conflicts of interest: barriers and opportunities for effective disclosure.

    Science.gov (United States)

    Weinfurt, Kevin P; Friedman, Joëlle Y; Allsbrook, Jennifer S; Dinan, Michaela A; Hall, Mark A; Sugarman, Jeremy

    2006-09-01

    There is little guidance regarding how to disclose researchers' financial interests to potential research participants. To determine what potential research participants want to know about financial interests, their capacity to understand disclosed information and its implications, and the reactions of potential research participants to a proposed disclosure statement. Sixteen focus groups in 3 cities, including 6 groups of healthy adults, 6 groups of adults with mild chronic illness, 1 group of parents of healthy children, 1 group of parents of children with leukemia or brain tumor, 1 group of adults with heart failure, and 1 group of adults with cancer. Focus group discussions covered a range of topics including financial relationships in clinical research, whether people should be told about them, and how they should be told. Audio-recordings of focus groups were transcribed, verified, and coded for analysis. Participants wanted to know about financial interests, whether or not those interests would affect their participation. However, they varied in their desire and ability to understand the nature and implications of financial interests. Whether disclosure was deemed important depended upon the risk of the research. Trust in clinicians was also related to views regarding disclosure. If given the opportunity to ask questions during the consent process, some participants would not have known what to ask; however, after the focus group sessions, participants could identify information they would want to know. Financial interests are important to potential research participants, but obstacles to effective disclosure exist.

  13. The Albufera Initiative for Biodiversity: a cost effective model for integrating science and volunteer participation in coastal protected area management

    NARCIS (Netherlands)

    Riddiford, N.J.; Veraart, J.A.; Férriz, I.; Owens, N.W.; Royo, L.; Honey, M.R.

    2014-01-01

    This paper puts forward a multi-disciplinary field project, set up in 1989 at the Parc Natural de s’Albufera in Mallorca, Balearic Islands, Spain, as an example of a cost effective model for integrating science and volunteer participation in a coastal protected area. Outcomes include the provision

  14. A Personal Touch: The Most Important Strategy for Recruiting Latino Research Participants.

    Science.gov (United States)

    García, Alexandra A; Zuñiga, Julie A; Lagon, Czarina

    2017-07-01

    People from non-White racial groups and other underserved populations, including Latinos, are frequently reluctant to participate in research. Yet their participation into research is foundational to producing information that researchers and health care providers need to address health disparities. The purpose of this article is to describe challenges we have encountered along with culturally relevant strategies we used in five research studies to recruit Mexican American participants from community settings, some of whom were also of low socioeconomic status. We found that the most effective recruitment strategies reflect the common cultural values of personalismo, simpátia, confianza, respeto, and familismo.

  15. Clinical verification of genetic results returned to research participants: findings from a Colon Cancer Family Registry.

    Science.gov (United States)

    Laurino, Mercy Y; Truitt, Anjali R; Tenney, Lederle; Fisher, Douglass; Lindor, Noralane M; Veenstra, David; Jarvik, Gail P; Newcomb, Polly A; Fullerton, Stephanie M

    2017-11-01

    The extent to which participants act to clinically verify research results is largely unknown. This study examined whether participants who received Lynch syndrome (LS)-related findings pursued researchers' recommendation to clinically verify results with testing performed by a CLIA-certified laboratory. The Fred Hutchinson Cancer Research Center site of the multinational Colon Cancer Family Registry offered non-CLIA individual genetic research results to select registry participants (cases and their enrolled relatives) from 2011 to 2013. Participants who elected to receive results were counseled on the importance of verifying results at a CLIA-certified laboratory. Twenty-six (76.5%) of the 34 participants who received genetic results completed 2- and 12-month postdisclosure surveys; 42.3% of these (11/26) participated in a semistructured follow-up interview. Within 12 months of result disclosure, only 4 (15.4%) of 26 participants reported having verified their results in a CLIA-certified laboratory; of these four cases, all research and clinical results were concordant. Reasons for pursuing clinical verification included acting on the recommendation of the research team and informing future clinical care. Those who did not verify results cited lack of insurance coverage and limited perceived personal benefit of clinical verification as reasons for inaction. These findings suggest researchers will need to address barriers to seeking clinical verification in order to ensure that the intended benefits of returning genetic research results are realized. © 2017 The Authors. Molecular Genetics & Genomic Medicine published by Wiley Periodicals, Inc.

  16. The significant impact of education, poverty, and race on Internet-based research participant engagement.

    Science.gov (United States)

    Hartz, Sarah M; Quan, Tiffany; Ibiebele, Abiye; Fisher, Sherri L; Olfson, Emily; Salyer, Patricia; Bierut, Laura J

    2017-02-01

    Internet-based technologies are increasingly being used for research studies. However, it is not known whether Internet-based approaches will effectively engage participants from diverse racial and socioeconomic backgrounds. A total of 967 participants were recruited and offered genetic ancestry results. We evaluated viewing Internet-based genetic ancestry results among participants who expressed high interest in obtaining the results. Of the participants, 64% stated that they were very or extremely interested in their genetic ancestry results. Among interested participants, individuals with a high school diploma (n = 473) viewed their results 19% of the time relative to 4% of the 145 participants without a diploma (P Internet-based research was low despite high reported interest. This suggests that explicit strategies should be developed to increase diversity in Internet-based research.Genet Med 19 2, 240-243.

  17. Reactor protection systems for the Replacement Research Reactor, ANSTO

    International Nuclear Information System (INIS)

    Morris, C.R.

    2003-01-01

    The 20-MW Replacement Research Reactor Project which is currently under construction at ANSTO will have a combination of a state of the art triplicated computer based reactor protection system, and a fully independent, and diverse, triplicated analogue reactor protection system, that has been in use in the nuclear industry, for many decades. The First Reactor Protection System (FRPS) consists of a Triconex triplicated modular redundant system that has recently been approved by the USNRC for use in the USA?s power reactor program. The Second Reactor Protection System is a hardwired analogue system supplied by Foxboro, the Spec 200 system, which is also Class1E qualified. The FRPS is used to drop the control rods when its safety parameter setpoints have been reached. The SRPS is used to drain the reflector tank and since this operation would result in a reactor poison out due to the time it would take to refill the tank the FRPS trip setpoints are more limiting. The FRPS and SRPS have limited hardwired indications on the control panels in the main control room (MCR) and emergency control centre (ECC), however all FRPS and SRPS parameters are capable of being displayed on the reactor control and monitoring system (RCMS) video display units. The RCMS is a Foxboro Series I/A control system which is used for plant control and monitoring and as a protection system for the cold neutron source. This paper will provide technical information on both systems, their trip logics, their interconnections with each other, and their integration into the reactor control and monitoring system and control panels. (author)

  18. Barriers to participation in mental health research: findings from the Genetics and Psychosis (GAP) Study.

    Science.gov (United States)

    Woodall, Anna; Howard, Louise; Morgan, Craig

    2011-01-01

    The aim of this study was to investigate why people with a first episode of psychosis choose or decline to participate in mental health research, using a qualitative study design. Participants were recruited via referrals from the Genetics and Psychosis (GAP) study. A total of 26 individuals with a first-episode of psychosis (nine of whom declined participation in the GAP study and 17 who participated) were individually interviewed and asked about their attitudes towards mental health research participation. Thematic analysis of interview transcripts was used to determine dominant themes and sub-themes on what constituted barriers and facilitators to participation. Reasons for research participation identified included a desire to help others, curiosity, and positive experiences with clinicians. Decisions to participate or not were also influenced by practical issues, including the timing of the approach, researchers' communication skills and whether individuals had concerns that it may be potentially harmful to their health. Other barriers to participation included patients' conceptualizations of mental health problems and the influence of other inpatients. Information on barriers and facilitators to recruitment in mental health research could inform recruitment strategies, thereby maximizing recruitment rates and minimizing the risk of selection biases.

  19. Political Ideology, Confidence in Science, and Participation in Alzheimer Disease Research Studies.

    Science.gov (United States)

    Gabel, Matthew; Gooblar, Jonathan; Roe, Catherine M; Selsor, Natalie J; Morris, John C

    2018-01-18

    Americans' confidence in science varies based on their political ideology. This ideological divide has potentially important effects on citizens' engagement with and participation in clinical studies of Alzheimer disease (AD). A probability sample of 1583 Americans was surveyed about their willingness to participate in longitudinal AD research and about their political attitudes. These survey results were compared with a survey of 382 participants in a longitudinal AD study at the Knight Alzheimer Disease Research Center. Among Americans, more conservative ideology decreases willingness to participate in a hypothetical longitudinal cohort study of AD both directly and through its negative effect on confidence in science. The Knight Alzheimer Disease Research Center study participants expressed more liberal ideology and greater confidence in science than Americans in general. Of the survey respondents opposed to participation, over a quarter changed to neutral or positive if the study returned their research results to them. Clinical studies of AD are likely biased toward participants who are more liberal and have higher confidence in science than the general population. This recruitment bias may be reduced by lowering the trust demanded of participants through measures such as returning research results to participants.

  20. Continuing training program in radiation protection in biological research centers

    International Nuclear Information System (INIS)

    Escudero, R.; Hidalgo, R.M.; Usera, F.; Macias, M.T.; Mirpuri, E.; Perez, J.; Sanchez, A.

    2008-01-01

    The use of ionizing radiation in biological research has many specific characteristics. A great variety of radioisotopic techniques involve unsealed radioactive sources, and their use not only carries a risk of irradiation, but also a significant risk of contamination. Moreover, a high proportion of researchers are in training and the labor mobility rate is therefore high. Furthermore, most newly incorporated personnel have little or no previous training in radiological protection, since most academic qualifications do not include training in this discipline. In a biological research center, in addition to personnel whose work is directly associated with the radioactive facility (scientific-technical personnel, operators, supervisors), there are also groups of support personnel The use of ionizing radiation in biological research has many specific characteristics. A great variety of radioisotopic techniques involve unsealed radioactive sources, and their use not only carries a risk of irradiation, but also a significant risk of contamination. Moreover, a high proportion of researchers are in training and the labor mobility rate is therefore high. Furthermore, most newly incorporated personnel have little or no previous training in radiological protection, since most academic qualifications do not include training in this discipline. In a biological research center, in addition to personnel whose work is directly associated with the radioactive facility (scientific-technical personnel, operators, supervisors), there are also groups of support personnel maintenance and instrumentation workers, cleaners, administrative personnel, etc. who are associated with the radioactive facility indirectly. These workers are affected by the work in the radioactive facility to varying degrees, and they therefore also require information and training in radiological protection tailored to their level of interaction with the installation. The aim of this study was to design a

  1. 'What do I know? Should I participate?' Considerations on participation in HIV related research among HIV infected adults in Bangalore, South India.

    Directory of Open Access Journals (Sweden)

    Rashmi J Rodrigues

    Full Text Available BACKGROUND: India has the highest number of HIV infected persons in the world after South Africa. Much HIV related behavioral, clinical and laboratory based research is ongoing in India. Yet little is known on Indian HIV patients' knowledge of research, their processes of decision making and motives for participation. We aimed to explore these areas among HIV infected individuals to understand their reasons for participating in research. METHODOLOGY/PRINCIPAL FINDINGS: This is a cross sectional survey among 173 HIV infected adults at a tertiary level hospital in Bangalore, India, done between October 2010 and January 2011. A pre-tested questionnaire was administered to the participants by trained research assistants to assess their knowledge regarding research, willingness to participate, decision making and determinants of participation. Participants were presented with five hypothetical HIV research studies. Each study had a different level of intervention and time commitment. Of respondents, 103(60%, said that research meant 'to discover something new' and 138(80% were willing to participate in research. A third of the respondents were unaware of their right to refuse participation. Willingness to participate in research varied with level of intervention. It was the lowest for the hypothetical study involving sensitive questions followed by the hypothetical drug trial; and was the highest for the hypothetical cross sectional questionnaire based study (p<0.0015. Individual health benefits and altruism were the primary motives for participation in research and indicate the presence of therapeutic misconception. Women were less likely to make autonomous decisions for participation in interventional studies. CONCLUSIONS/SIGNIFICANCE: Despite a majority willing to participate, over a third of respondents did not have any knowledge of research or the voluntary nature of participation. This has ethical implications. Researchers need to focus on

  2. Financial remuneration for clinical and behavioral research participation: ethical and practical considerations.

    Science.gov (United States)

    Permuth-Wey, Jennifer; Borenstein, Amy R

    2009-04-01

    Although the practice of providing payment to clinical research participants has been ongoing for more than a century, it remains an ethically controversial topic among members of the research community. The aims of this commentary are to summarize ethical and practical considerations regarding financial remuneration of research participants and to make recommendations for researchers contemplating this practice. A PubMed search was conducted to explore the ethical implications surrounding financial remuneration and review the body of empiric data on this topic. Financial remuneration is perceived to be ethically acceptable by many researchers and research participants and can be helpful in the recruitment process. It is recommended that when investigators are contemplating whether to offer payment to research participants, they should consider the nature of the study and the potential benefits and risks to the participants, institutional or organizational guidelines, and cultural and societal norms specific to the population being studied. Financial remuneration has the ability to serve as a sign of appreciation for the contributions of research participants and a way to facilitate clinical and behavioral research.

  3. The Role of High School Research Experiences in Shaping Students' Research Self-Efficacy and Preparation for Undergraduate Research Participation

    Science.gov (United States)

    Swan, Amy K.; Inkelas, Karen Kurotsuchi; Jones, Jill N.; Pretlow, Joshua; Keller, Tierney F.

    2018-01-01

    The effects of undergraduate research participation are well documented, but less is known about students' pathways into undergraduate research participation. This mixed-methods study explored the role of an International Baccalaureate research project in students' development of research self-efficacy in high school, and how this development…

  4. A Framework for Clarifying "Participation" in Participatory Research to Prevent its Rejection for the Wrong Reasons

    Directory of Open Access Journals (Sweden)

    Olivier Barreteau

    2010-06-01

    Full Text Available Participatory research relies on stakeholder inputs to obtain its acclaimed benefits of improved social relevance, validity, and actionability of research outcomes. We focus here on participatory research in the context of natural resource management. Participants' acceptance of participatory research processes is key to their implementation. Our first assumption is that this positive view and acceptance of participation in research processes is a public good for the whole participatory research community. We also assume that the diversity of participatory forms of research is rarely considered by potential participants when they make their decisions about whether or not to participate in a proposed process. We specifically address how to avoid stakeholders' reluctance to be involved in participatory research projects based on disillusion with past experiences. We argue that the disappointment experienced by stakeholders and other participants (i.e., researchers and policy makers can be avoided by being upfront and precise about how "participation" will be implemented, and what kind of involvement is expected from participants. Such a collective effort from the research community can also clarify the variety of possible implementations for potential participants. Building on earlier efforts to characterize and categorize the diversity of participatory research approaches, we develop a conceptual analytic procedural framework to make participants' roles explicit in the implementation of different participatory research processes. This framework consists of three facets: (1 the flows of information among participants and the control over these flows for each step in a process, i.e., who will be expected to produce information, who will use this information, and who will receive the results; (2 the timing of the involvement of participants in the different steps of the research process, and the framing power that is associated with each process

  5. The city as a participant in the protection of groundwater in Brazil; O municipio como participe na protecao das aguas subterraneas no Brasil

    Energy Technology Data Exchange (ETDEWEB)

    Cordeiro de Souza, L.

    2012-11-01

    Brazilian environmental legislation aims to ensure the protection and preservation of the environment, and particularly its natural resources, in search of a better quality of life for all. The lack of force in existing statutes, however, sometimes renders the purpose of the law ineffective. Our water sources, providing this vital and essential element for life, are suffering pollution and contamination. Our focus here is on the subject of groundwater, which is widely relied upon in Brazil as a water source, but treated in some places in an uncontrolled way, and due to different forms of pollution and contamination arriving at the vulnerable areas of the aquifers, may easily be compromised both in quality and quantity. Constitutional authority to legislate on groundwater has been given to the Member States, since it falls outside the legal remit of individual municipalities. Studies show, however, that pollutants are reaching the aquifers from the overlying soil, which leads to a demand that the municipalities should use their constitutional authority to legislate on land use and its management to protect and preserve these important water sources, especially in the area of the Guarani aquifer. To this effect, we propose the creation of a Special Environment Zoning tool (ZEA) to limit land use in areas of aquifer vulnerability, by which municipalities become active participants in the protection process aimed at preventing harm to the groundwater of the Guarani aquifer. (Author)

  6. Understandings of Participation in Behavioural Research: A Qualitative Study of Gay and Bisexual Men in Scotland.

    Directory of Open Access Journals (Sweden)

    Nicola Boydell

    Full Text Available An array of empirical research has emerged related to public participation in health research. To date, few studies have explored the particular perspectives of gay and bisexual men taking part in behavioural surveillance research, which includes the donation of saliva swabs to investigate HIV prevalence and rates of undiagnosed HIV. Semi-structured interviews were conducted with twenty-nine gay and bisexual men in Scotland who had participated in a bar-based survey. Thematic analysis of men's accounts of their motives for participation and their perceptions of not receiving individual feedback on HIV status suggested a shared understanding of participation in research as a means of contributing to 'community' efforts to prevent the spread of HIV. Most men expressed sophisticated understandings of the purpose of behavioural research and distinguished between this and individual diagnostic testing. Despite calls for feedback on HIV results broadly, for these men feedback on HIV status was not deemed crucial.

  7. Understandings of Participation in Behavioural Research: A Qualitative Study of Gay and Bisexual Men in Scotland.

    Science.gov (United States)

    Boydell, Nicola; Fergie, Gillian May; McDaid, Lisa Margaret; Hilton, Shona

    2015-01-01

    An array of empirical research has emerged related to public participation in health research. To date, few studies have explored the particular perspectives of gay and bisexual men taking part in behavioural surveillance research, which includes the donation of saliva swabs to investigate HIV prevalence and rates of undiagnosed HIV. Semi-structured interviews were conducted with twenty-nine gay and bisexual men in Scotland who had participated in a bar-based survey. Thematic analysis of men's accounts of their motives for participation and their perceptions of not receiving individual feedback on HIV status suggested a shared understanding of participation in research as a means of contributing to 'community' efforts to prevent the spread of HIV. Most men expressed sophisticated understandings of the purpose of behavioural research and distinguished between this and individual diagnostic testing. Despite calls for feedback on HIV results broadly, for these men feedback on HIV status was not deemed crucial.

  8. Accessing Fellow Academics as Research Participants: Constraints, Collegiality, and “Academic Citizenship”

    Directory of Open Access Journals (Sweden)

    Yongyan Li

    2015-06-01

    Full Text Available In this paper I discuss some constraints and implications in accessing fellow academics as research participants, a topic that has rarely been addressed thus far in the literature. I will point out that a lack of cooperation from fellow academics may defeat our research purposes, and will survey some studies involving U.S., European, and Chinese academics as research participants to illustrate education researchers’ efforts to work with fellow academics against the odds. By referencing my personal experience of engaging with Chinese academics, I will then discuss the role of personal contacts in research and reflect upon various constraints in accessing fellow academics as research participants. I will suggest that, when we do participate in a fellow researcher’s project, the incentive is a desire to support our peers in the spirit of “academic citizenship.”

  9. Recruitment and Participation of Older Lesbian and Bisexual Women in Intervention Research.

    Science.gov (United States)

    Wood, Susan F; Brooks, Jacquetta; Eliason, Michele J; Garbers, Samantha; McElroy, Jane A; Ingraham, Natalie; Haynes, Suzanne G

    2016-07-07

    Very little research has addressed issues of recruitment and participation of lesbian and bisexual (LB) women, aged 40 and older, into research studies. This study is based on a larger cross-site intervention study that recruited women from five geographic regions in the United States for culturally specific LB healthy weight programs, lasting 12 or 16 weeks. Principal investigators (PIs) of the five intervention programs completed a questionnaire on recruitment and participation strategies and barriers. Participant data on completion and sociodemographic variables were compiled and analyzed. The recruitment strategies the programs' PIs identified as most useful included word-of-mouth participant referrals, emails to LB participants' social networks, and use of electronic health records (at the two clinic-based programs) to identify eligible participants. Flyers and web postings were considered the least useful. Once in the program, participation and completion rates were fairly high (approximately 90%), although with varying levels of engagement in the different programs. Women who were younger or single were more likely to drop out. Women with disabilities had a lower participation/completion rate (82%) than women without any disability (93%). Dropouts were associated with challenges in scheduling (time of day, location) and changes in health status. Implementation of key strategies can improve both recruitment and participation, but there is a great need for further study of best practices to recruit and promote participation of LB women for health intervention research. Copyright © 2016 Jacobs Institute of Women's Health. All rights reserved.

  10. Decision-making and motivation to participate in biomedical research in southwest Nigeria.

    Science.gov (United States)

    Osamor, Pauline E; Kass, Nancy

    2012-08-01

    Motivations and decision-making styles that influence participation in biomedical research vary across study types, cultures, and countries. While there is a small amount of literature on informed consent in non-western cultures, few studies have examined how participants make the decision to join research. This study was designed to identify the factors motivating people to participate in biomedical research in a traditional Nigerian community, assess the degree to which participants involve others in the decision-making process, and examine issues of autonomy in decision-making for research. A descriptive cross-sectional study was conducted with 100 adults (50 men, 50 women) in an urban Nigerian community who had participated in a biomedical research study. Subjects were interviewed using a survey instrument. Two-thirds of the respondents reported participating in the biomedical study to learn more about their illness, while 30% hoped to get some medical care. Over three-quarters (78%) of participants discussed the enrollment decision with someone else and 39% reported obtaining permission from a spouse or family member to participate in the study. Women were more than twice as likely as men to report obtaining permission from someone else before participating. More specifically, half of the female participants reported seeking permission from a spouse before enrolling. The findings suggest that informed consent in this community is understood and practised as a relational activity that involves others in the decision making process. Further studies are needed in non-Western countries concerning autonomy, decision-making, and motivation to participate in research studies. © 2012 Blackwell Publishing Ltd.

  11. Utilization of radioisotopes and irradiation in crop protection research

    International Nuclear Information System (INIS)

    Ong, S.H.

    1981-01-01

    There is a growing realization of the benefits which may be derived from the application of radioisotopes and radiation sources in the different disciplines of crop protection research. Many investigations which might only be carried out with extreme difficulty or not all by conventional methods, could be pursued with relative ease. Radioisotopes and irradiation have been utilized in understanding the physiology and behaviour of pests and their biochemical processes and in consequence, have contributed beneficially to the development of better control techniques and more effective pesticides. On the environmental aspects, radioisotopic techniques have provided a useful tool in understanding the behaviour, metabolism and residues of pesticides in the environment. (author)

  12. Why female sex workers participate in HIV research: the illusion of voluntariness.

    Science.gov (United States)

    Reed, Elizabeth; Fisher, Celia B; Blankenship, Kim M; West, Brooke S; Khoshnood, Kaveh

    2017-07-01

    The purpose of this study was to examine factors influencing the motivation for and perceived voluntariness of participation in non-intervention HIV research among female sex workers (FSW) in India. FSW (n = 30) who participated in non-intervention HIV studies in the previous three years were recruited from a local community-based organization. Semi-structured qualitative interviews focused on women's personal and economic motivations for participation and their perceptions of the informed consent process. Interviews were audio-recorded, translated, transcribed, and reviewed for common themes. Content analysis indicated that while many women reported willing participation, reports of obligatory participation were also a common theme. Obligations included money-related pressures and coercion by other FSW, social pressures, not wanting to disappoint the researchers, and perceiving that they had a contractual agreement to complete participation as a result of signing the consent form. Findings suggest a need for additional efforts during and following informed consent to prevent obligatory participation in HIV research studies among FSW. Findings emphasize the importance of integrating ongoing participant feedback into research ethics practices to identify issues not well addressed via standard ethics protocols when conducting HIV research among vulnerable populations.

  13. Let's Play it Safe: Ethical Considerations from Participants in a Photovoice Research Project

    Directory of Open Access Journals (Sweden)

    Karin Hannes PhD

    2014-02-01

    Full Text Available The use of images and other visual data in qualitative research projects poses new ethical challenges, particularly in the context of participatory research projects that engage research participants in conducting fieldwork. Little is known about how research participants deal with the ethical challenges involved in conducting fieldwork, or whether they succeed in making balanced ethical judgments in collecting images of identifiable people and places. This study aims to increase our understanding of these ethical challenges. From an inductive analysis of interview data generated from nine participants recently involved in a photovoice research project we conclude that raising awareness about ethical aspects of conducting visual research increases research participants' sensitivity toward ethical issues related to privacy, anonymity, and confidentiality of research subjects. However, personal reasons (e.g., cultural, emotional and cautions about potential ethical dilemmas also prompt avoidance behavior. While ethics sessions may empower participants by equipping them with the knowledge of research ethics, ethics sessions may also have an unintentional impact on research.

  14. Researchers’ participation in and motivations for engaging with research information management systems

    Science.gov (United States)

    Wu, Shuheng; Lee, Dong Joon

    2018-01-01

    Researchers’ participation in online RIMSs This article examined how researchers participated in research information management systems (RIMSs), their motivations for participation, and their priorities for those motivations. Profile maintenance, question-answering, and endorsement activities were used to define three cumulatively increasing levels of participation: Readers, Record Managers, and Community Members. Junior researchers were more engaged in RIMSs than were senior researchers. Postdocs had significantly higher odds of endorsing other researchers for skills and being categorized as Community Members than did full and associate professors. Assistant professors were significantly more likely to be Record Managers than were members of any other seniority categories. Finally, researchers from the life sciences showed a significantly higher propensity for being Community Members than Readers and Record Managers when compared with researchers from engineering and the physical sciences, respectively. Researchers’ motivations to participate in RIMSs When performing activities, researchers were motivated by the desire to share scholarship, feel competent, experience a sense of enjoyment, improve their status, and build ties with other members of the community. Moreover, when researchers performed activities that directly benefited other members of a RIMS, they assigned higher priorities to intrinsic motivations, such as perceived self-efficacy, enjoyment, and building community ties. Researchers at different stages of their academic careers and disciplines ranked some of the motivations for engaging with RIMSs differently. The general model of research participation in RIMSs; the relationships among RIMS activities; the motivation scales for activities; and the activity, seniority, and discipline-specific priorities for the motivations developed by this study provide the foundation for a framework for researcher participation in RIMSs. This framework can be

  15. Cultivating Research Pedagogies with Adolescents: Created Spaces, Engaged Participation, and Embodied Inquiry

    Science.gov (United States)

    Wissman, Kelly K.; Staples, Jeanine M.; Vasudevan, Lalitha; Nichols, Rachel E.

    2015-01-01

    This paper conceptualizes an approach to adolescent literacies research we call "research pedagogies." This approach recognizes the pedagogical features of the research process and includes three dimensions: created spaces, engaged participation, and embodied inquiry. By drawing upon and sometimes recasting foundational anthropological…

  16. Reciprocity-based reasons for benefiting research participants: most fail, the most plausible is problematic.

    Science.gov (United States)

    Sofaer, Neema

    2014-11-01

    A common reason for giving research participants post-trial access (PTA) to the trial intervention appeals to reciprocity, the principle, stated most generally, that if one person benefits a second, the second should reciprocate: benefit the first in return. Many authors consider it obvious that reciprocity supports PTA. Yet their reciprocity principles differ, with many authors apparently unaware of alternative versions. This article is the first to gather the range of reciprocity principles. It finds that: (1) most are false. (2) The most plausible principle, which is also problematic, applies only when participants experience significant net risks or burdens. (3) Seldom does reciprocity support PTA for participants or give researchers stronger reason to benefit participants than equally needy non-participants. (4) Reciprocity fails to explain the common view that it is bad when participants in a successful trial have benefited from the trial intervention but lack PTA to it. © 2013 John Wiley & Sons Ltd.

  17. 'What do I know? Should I participate?' Considerations on participation in HIV related research among HIV infected adults in Bangalore, South India.

    Science.gov (United States)

    Rodrigues, Rashmi J; Antony, Jimmy; Krishnamurthy, Shubha; Shet, Anita; De Costa, Ayesha

    2013-01-01

    India has the highest number of HIV infected persons in the world after South Africa. Much HIV related behavioral, clinical and laboratory based research is ongoing in India. Yet little is known on Indian HIV patients' knowledge of research, their processes of decision making and motives for participation. We aimed to explore these areas among HIV infected individuals to understand their reasons for participating in research. This is a cross sectional survey among 173 HIV infected adults at a tertiary level hospital in Bangalore, India, done between October 2010 and January 2011. A pre-tested questionnaire was administered to the participants by trained research assistants to assess their knowledge regarding research, willingness to participate, decision making and determinants of participation. Participants were presented with five hypothetical HIV research studies. Each study had a different level of intervention and time commitment. Of respondents, 103(60%), said that research meant 'to discover something new' and 138(80%) were willing to participate in research. A third of the respondents were unaware of their right to refuse participation. Willingness to participate in research varied with level of intervention. It was the lowest for the hypothetical study involving sensitive questions followed by the hypothetical drug trial; and was the highest for the hypothetical cross sectional questionnaire based study (pWomen were less likely to make autonomous decisions for participation in interventional studies. Despite a majority willing to participate, over a third of respondents did not have any knowledge of research or the voluntary nature of participation. This has ethical implications. Researchers need to focus on enabling potential research participants understand the concepts of research, promote autonomous decisions, especially by women and restrict therapeutic misconception.

  18. Participation in environmental health research by placenta donation - a perception study

    DEFF Research Database (Denmark)

    Lind, Uffe; Mose, Tina; Knudsen, Lisbeth E

    2007-01-01

    background information but no follow up. METHODS: Nineteen semi-structured qualitative interviews were conducted with participants in the placenta perfusion study after donation of placenta. Observation studies were made of recruitment sessions. RESULTS: The interviewed participants are generally in favour......, but trust is something which needs to be created through "trust-work". Face-to-face interaction, written information material and informed consent forms play important parts in creating trusting relationships in medical research. CONCLUSION: Medical research ethics do not only amount to specific types......BACKGROUND: Much environmental health research depends on human volunteers participating with biological samples. The perception study explores why and how people participate in a placenta perfusion study in Copenhagen. The participation implies donation of the placenta after birth and some...

  19. Public Libraries, Museums and User Participation - An outline of a research projeckt

    DEFF Research Database (Denmark)

    Jochumsen, Henrik; Rasmussen, Casper Hvenegaard

    2013-01-01

    The aim of this paper is to sketch a research project on user participation in public libraries and museums. For several years’ user participation, participatory culture and user driven innovation have been “buzzwords” in the ongoing development of cultural institutions in general and in museums...... of the research project. The case of Roskilde is particularly illustrative as it not only contains user participation, libraries and museums but also illustrate how the development of user participation actually blurs the borders of the two institutions. After a definition of the concept of user participation...... and a brief discussion of the institutional and political relevance of doing research into the field, we will pinpoint some challenges that both libraries and museums are facing so as to emphasize the importance of studying how the increasing focus on user development is expressed in both institutions...

  20. Research Operator Protection Optimization by the Education and Training on Radiation Protection

    Energy Technology Data Exchange (ETDEWEB)

    Mateos, J. C.; Avalos, J.; Garcia-Leon, M.; Garcia-Tenorio, R.; Gomez-Puerto, A.; Gomez, M.; Herrador, M.; Lejeune, J.; Luis-Simon, J.; Marquez, A.; Maranon, J.; Respaldiza, M. A.; Sanchez-Angulo, C.; Sanchez-Doblado, F.; Sarmiento, J. M.

    2004-07-01

    One of the best ways of protection to operators in any radiation practice is to provide him/her with an adequate level of education and training in radiation protection. There are many international references where this fact is pointed out and particularly it is recognized the importance of the introduction of radiation protection courses previously to their work with ionising radiation. The University of Sevilla (Spain) through its Radioisotope Service has been organizing biannually since 1995 Training Courses for Supervisors and Operators of Radioactive Installations for university investigators that use radioactive sources or radiation equipment. The courses are imparted by teachers from the university radioactive installations, hospital physicist specialists from medical physics services and medical doctors from prevention labour health service; all of them are the authors of this communication. The students are postgraduate students or teachers that need operate with ionising radiation in their research laboratories. Up to date, it has been organized 4 courses series with an average of 30 students per course. These courses are homologated by the Nuclear Security Council and let the student obtain the licence for Supervisors or Operators of Radioactive Installations in each of the following applications fields: a) Laboratories with Non-Encapsulated Sources. This application includes research activities in Biology, Chemistry, Physics, Medicine and Pharmacy. b) Radiation Generator Equipment. This last one includes equipment such as X-Rays apparatus for diffraction studies in physics, chemistry and art sciences, or Particle Accelerator for atomic physics research in the National Accelerator Centre. The practical sessions of the courses are imparted in the radioactive installations of the Seville university. In this study it is described the details of the organization of the courses. (Author)

  1. Research Operator Protection Optimization by the Education and Training on Radiation Protection

    International Nuclear Information System (INIS)

    Mateos, J. C.; Avalos, J.; Garcia-Leon, M.; Garcia-Tenorio, R.; Gomez-Puerto, A.; Gomez, M.; Herrador, M.; Lejeune, J.; Luis-Simon, J.; Marquez, A.; Maranon, J.; Respaldiza, M. A.; Sanchez-Angulo, C.; Sanchez-Doblado, F.; Sarmiento, J. M.

    2004-01-01

    One of the best ways of protection to operators in any radiation practice is to provide him/her with an adequate level of education and training in radiation protection. There are many international references where this fact is pointed out and particularly it is recognized the importance of the introduction of radiation protection courses previously to their work with ionising radiation. The University of Sevilla (Spain) through its Radioisotope Service has been organizing biannually since 1995 Training Courses for Supervisors and Operators of Radioactive Installations for university investigators that use radioactive sources or radiation equipment. The courses are imparted by teachers from the university radioactive installations, hospital physicist specialists from medical physics services and medical doctors from prevention labour health service; all of them are the authors of this communication. The students are postgraduate students or teachers that need operate with ionising radiation in their research laboratories. Up to date, it has been organized 4 courses series with an average of 30 students per course. These courses are homologated by the Nuclear Security Council and let the student obtain the licence for Supervisors or Operators of Radioactive Installations in each of the following applications fields: a) Laboratories with Non-Encapsulated Sources. This application includes research activities in Biology, Chemistry, Physics, Medicine and Pharmacy. b) Radiation Generator Equipment. This last one includes equipment such as X-Rays apparatus for diffraction studies in physics, chemistry and art sciences, or Particle Accelerator for atomic physics research in the National Accelerator Centre. The practical sessions of the courses are imparted in the radioactive installations of the Seville university. In this study it is described the details of the organization of the courses. (Author)

  2. Broadening participation in Research Experiences for Undergraduates (REU) programs: an evaluation of the team research model for undergraduate research experiences

    Science.gov (United States)

    Berthelote, A. R.; Geraghty Ward, E. M.; Dalbotten, D. M.

    2014-12-01

    The REU site on sustainable land and water resources has a goal of broadening participation in the geosciences by underrepresented groups and particularly Native American students. We are evaluating modifications to the traditional REU model in order to better support these students. First, we review a team research model for REU students, where students are placed on teams and work together in peer groups supported by a team of mentors. Second, the REU takes place in locations that have high populations of Native American students to remove barriers to participation for non-traditional students. Finally, the teams do research on issues related to local concerns with cultural focus. Traditional REU models (1 faculty to 1 student/on campus) have been shown to be effective in supporting student movement into graduate programs but often fail to attract a diverse group of candidates. In addition, they rely for success on the relationship between faculty and student, which can often be undermined by unrealistic expectations on the part of the student about the mentor relationship, and can be exacerbated by cultural misunderstanding, conflicting discourse, or students' personal or family issues. At this REU site, peer mentorship and support plays a large role. Students work together to select their research question, follow the project to completion and present the results. Students from both native and non-native backgrounds learn about the culture of the partner reservations and work on a project that is of immediate local concern. The REU also teaches students protocols for working on Native American lands that support good relations between reservation and University. Analysis of participant data gathered from surveys and interview over the course of our 3-year program indicates that the team approach is successful. Students noted that collaborating with other teams was rewarding and mentors reported positively about their roles in providing guidance for the student

  3. Community-Engaged Strategies to Increase Diversity of Participants in Health Education Research.

    Science.gov (United States)

    Khubchandani, Jagdish; Balls-Berry, Joyce; Price, James H; Webb, Fern J

    2016-05-01

    Minorities have historically been underrepresented in health-related research. Several strategies have been recommended to increase the participation of minorities in health-related research. However, most of the recommendations and guidelines apply to research in clinical or laboratory contexts. One of the more prominent methods to enhance minority participation in health-related research that has recently come to the fore is the use of community-engaged strategies. The purpose of this article is to summarize community-engaged outreach efforts that can be translated into useable strategies for health education research teams seeking to diversify the pool of research participants. Also, we provide a succinct overview of the various components of a research endeavor that may influence minority participation in health-related research. Finally, we analyze how health education specialists and SOPHE (Society of Public Health Education) can play a leading role in helping enhance minority participation in health-related research. © 2016 Society for Public Health Education.

  4. Participants' perceptions of research benefits in an African genetic epidemiology study.

    Science.gov (United States)

    Appiah-Poku, John; Newton, Sam; Kass, Nancy

    2011-12-01

      Both the Council for International Organization of Medical Sciences and the Helsinki Declaration emphasize that the potential benefits of research should outweigh potential harms; consequently, some work has been conducted on participants' perception of benefits in therapeutic research. However, there appears to be very little work conducted with participants who have joined non-therapeutic research. This work was done to evaluate participants' perception of benefits in a genetic epidemiological study by examining their perception of the potential benefits of enrollment.   In-depth interviews lasting between 45 and 60 minutes were conducted with a convenient sample of 25 ill patients and 25 healthy accompanying relatives enrolled in a genetic epidemiological study of tuberculosis. Recorded interviews were transcribed and analyzed using content analysis.   Participants perceived that research was beneficial and some of the benefits included the generation of new knowledge, finding the cause of diseases, as well as the control, eradication and prevention of disease. Some thought that research was risky whilst others thought that the benefits outweighed the risks.   Participants perceived research to be beneficial and most of them thought that, though it was risky, the benefits outweighed the risks. It is our view that researchers need to give serious consideration to participant's perception of benefits in designing their consent forms, to see to the fulfillment of achievable goals. © 2011 Blackwell Publishing Ltd.

  5. Model Based Cyber Security Analysis for Research Reactor Protection System

    Energy Technology Data Exchange (ETDEWEB)

    Sho, Jinsoo; Rahman, Khalil Ur; Heo, Gyunyoung [Kyung Hee Univ., Yongin (Korea, Republic of); Son, Hanseong [Joongbu Univ., Geumsan (Korea, Republic of)

    2013-07-01

    The study on the qualitative risk due to cyber-attacks into research reactors was performed using bayesian Network (BN). This was motivated to solve the issues of cyber security raised due to digitalization of instrumentation and control (I and C) system. As a demonstrative example, we chose the reactor protection system (RPS) of research reactors. Two scenarios of cyber-attacks on RPS were analyzed to develop mitigation measures against vulnerabilities. The one is the 'insertion of reactor trip' and the other is the 'scram halt'. The six mitigation measures are developed for five vulnerability for these scenarios by getting the risk information from BN.

  6. Ultraviolet radiation protection and skin cancer awareness in recreational athletes: a survey among participants in a running event.

    Science.gov (United States)

    Christoph, Sebastian; Cazzaniga, Simone; Hunger, Robert Emil; Naldi, Luigi; Borradori, Luca; Oberholzer, Patrick Antony

    2016-01-01

    Ultraviolet radiation (UVR) protection and skin cancer awareness are essential in the avoidance of cutaneous malignancies. Skin cancer prevention programmes involve public educational campaigns, for example, for outdoor workers or school children. Since nonprofessional sun exposure (e.g. during outdoor sport) is increasing with today's lifestyle, we assessed UVR protection and skin cancer awareness among recreational athletes. This survey-based, paper/pencil study was designed to assess UVR protection and skin cancer awareness among recreational athletes attending the largest running event in Switzerland. All adults (age 18 and older) attending this run were invited to complete our survey at our study booth. Our form consisted of questions about participants' personal characteristics such as age, gender, educational attainment, skin type, history of sunburns, and personal/family history of skin cancer, as well as participants' subjective attitudes and behaviours relating to UVR protection and skin cancer avoidance. We calculated separate scores for individual UVR protection and skin cancer awareness. We tested these two scores in relation to educational level as a primary endpoint. In addition, the impacts of further distinct characteristics were assessed in multivariable analysis. A total of 970 runners (457 males, 513 females, mean age 41.0 years) completed our survey. Our results indicate that UVR protection is dependent on age, gender, skin type and personal history of skin cancer. Educational attainment (at univariate level), age, gender and skin type (in multivariable analysis) significantly affected the skin cancer awareness score. Our findings suggest that protection measures among recreational sportsmen can be improved. Achievements are notable in older, fair skinned, female runners. Our findings indicate that further work is needed in the education of the general public, and athletes in particular.

  7. Why families choose not to participate in research: feedback from non-responders.

    Science.gov (United States)

    Levickis, Penny; Naughton, Geraldine; Gerner, Bibi; Gibbons, Kay

    2013-01-01

    Subjects who did not respond to an invitation to participate in a community-based randomised controlled trial for childhood obesity in Melbourne, Australia were approached to investigate reasons for non-participation. Between January and September 2007, 305 families were sent a brief questionnaire and invited to take part in the current study. Thirty-seven questionnaires were returned and 12 parents agreed to a follow-up interview. Questionnaire data were quantitatively analysed. The interviews were conducted via the telephone and provided detailed qualitative information on non-participation. Lack of time was cited as a main reason for non-participation. Different aspects of time were discussed including lack of time to dedicate to a topic seen as low priority, overestimated perception of time for study commitments and the inappropriate timing of the request. Other major reasons for non-participation included risk of negative experiences and the impact of the initial contact with the study. This study illustrates the experiences of potential participants during the recruitment process, their perceptions of study commitments and how their previous experiences impact on their decision to participate in research. These findings provide insight into the decision not to participate in health research and could be used to modify recruitment procedures for future health research as a way of improving the recruitment experience for potential participants as well as enhancing recruitment rates. © 2012 The Authors. Journal of Paediatrics and Child Health © 2012 Paediatrics and Child Health Division (Royal Australasian College of Physicians).

  8. 22 CFR 63.4 - Grants to foreign participants to lecture, teach, and engage in research.

    Science.gov (United States)

    2010-04-01

    ... 22 Foreign Relations 1 2010-04-01 2010-04-01 false Grants to foreign participants to lecture, teach, and engage in research. 63.4 Section 63.4 Foreign Relations DEPARTMENT OF STATE PUBLIC DIPLOMACY AND EXCHANGES PAYMENTS TO AND ON BEHALF OF PARTICIPANTS IN THE INTERNATIONAL EDUCATIONAL AND CULTURAL...

  9. Sports participation and alcohol use among adolescents: the impact of measurement and other research design elements.

    Science.gov (United States)

    Mays, Darren; Gatti, Margaret E; Thompson, Nancy J

    2011-06-01

    Sports participation, while offering numerous developmental benefits for adolescents, has been associated with alcohol use in prior research. However, the relationship between sports participation and alcohol use among adolescents remains unclear, particularly how research design elements impact evidence of this relationship. We reviewed the evidence regarding sports participation and alcohol use among adolescents, with a focus on examining the potential impact of research design elements on this evidence. Studies were assessed for eligibility and coded based on research design elements including: study design, sampling method, sample size, and measures of sports participation and alcohol use. Fifty-four studies were assessed for eligibility, 29 of which were included in the review. Nearly two-thirds used a cross-sectional design and a random sampling method, with sample sizes ranging from 178 to 50,168 adolescents (Median = 1,769). Sixteen studies used a categorical measure of sports participation, while 7 applied an index-type measure and 6 employed some other measure of sports participation. Most studies assessed alcohol-related behaviors (n = 18) through categorical measures, while only 6 applied frequency only measures of alcohol use, 1 study applied quantity only measures, and 3 studies used quantity and frequency measures. Sports participation has been defined and measured in various ways, most of which do not differentiate between interscholastic and community-based contexts, confounding this relationship. Stronger measures of both sports participation and alcohol use need to be applied in future studies to advance our understanding of this relationship among youths.

  10. On the utility of within-participant research design when working with patients with neurocognitive disorders.

    Science.gov (United States)

    Steingrimsdottir, Hanna Steinunn; Arntzen, Erik

    2015-01-01

    Within-participant research designs are frequently used within the field of behavior analysis to document changes in behavior before, during, and after treatment. The purpose of the present article is to show the utility of within-participant research designs when working with older adults with neurocognitive disorders. The reason for advocating for these types of experimental designs is that they provide valid information about whether the changes that are observed in the dependent variable are caused by manipulations of the independent variable, or whether the change may be due to other variables. We provide examples from published papers where within-participant research design has been used with patients with neurocognitive disorders. The examples vary somewhat, demonstrating possible applications. It is our suggestion that the within-participant research design may be used more often with the targeted client group than is documented in the literature at the current date.

  11. Broadening Participation Not Border Protection: How Universities Can Support Women in Computer Science

    Science.gov (United States)

    Michell, Dee; Szorenyi, Anna; Falkner, Katrina; Szabo, Claudia

    2017-01-01

    Computer science, like technology in general, is seen as a masculine field and the under-representation of women an intransigent problem. In this paper, we argue that the cultural belief in Australia that computer science is a domain for men results in many girls and women being chased away from that field as part of a border protection campaign…

  12. A participatory study of teenagers and young adults views on access and participation in cancer research.

    Science.gov (United States)

    Taylor, Rachel M; Solanki, Anita; Aslam, Natasha; Whelan, Jeremy S; Fern, Lorna A

    2016-02-01

    The purpose of this study was to elicit young people's views on access and participation in cancer research. Eight young people aged 18-25 years with a previous cancer diagnosis aged 15-24 participated in a one day workshop utilising participatory methodology. The workshop consisted of four exercises: role play/scene setting; focus group examining thoughts and opinions of research access and participation; individual reflection on access to different types of research; and creative interpretation of the workshop. Further consultation with 222 young people with cancer was conducted using an electronic survey. Three themes emerged: • Patient choice: Young people thought it was their right to know all options about available research. Without knowledge of all available studies they would be unable to make an informed choice about participation. • Role of healthcare professionals as facilitators/barriers: Young people suggested non-clinical healthcare professionals such as social workers and youth support coordinators may be more suited to approaching young people about participation in psychosocial and health services research. • Value of the research: The what, when and how information was delivered was key in relaying the value of the study and assisting young people in their decision to participate. Further consultation showed approximately 70% wanted to find out about all available research. However, one third trusted healthcare professionals to decide which research studies to inform them of. Effective ways to support healthcare professionals approaching vulnerable populations about research are needed to ensure young people are empowered to make informed choices about research participation. Copyright © 2015 Elsevier Ltd. All rights reserved.

  13. High hospital research participation and improved colorectal cancer survival outcomes: a population-based study.

    Science.gov (United States)

    Downing, Amy; Morris, Eva Ja; Corrigan, Neil; Sebag-Montefiore, David; Finan, Paul J; Thomas, James D; Chapman, Michael; Hamilton, Russell; Campbell, Helen; Cameron, David; Kaplan, Richard; Parmar, Mahesh; Stephens, Richard; Seymour, Matt; Gregory, Walter; Selby, Peter

    2017-01-01

    In 2001, the National Institute for Health Research Cancer Research Network (NCRN) was established, leading to a rapid increase in clinical research activity across the English NHS. Using colorectal cancer (CRC) as an example, we test the hypothesis that high, sustained hospital-level participation in interventional clinical trials improves outcomes for all patients with CRC managed in those research-intensive hospitals. Data for patients diagnosed with CRC in England in 2001-2008 (n=209 968) were linked with data on accrual to NCRN CRC studies (n=30 998). Hospital Trusts were categorised by the proportion of patients accrued to interventional studies annually. Multivariable models investigated the relationship between 30-day postoperative mortality and 5-year survival and the level and duration of study participation. Most of the Trusts achieving high participation were district general hospitals and the effects were not limited to cancer 'centres of excellence', although such centres do make substantial contributions. Patients treated in Trusts with high research participation (≥16%) in their year of diagnosis had lower postoperative mortality (presearch participation, with a reduction in postoperative mortality of 1.5% (6.5%-5%, pstudies for all patients with CRC treated in the hospital study participants. Improvement precedes and increases with the level and years of sustained participation. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.

  14. Ecological Momentary Assessment in Behavioral Research: Addressing Technological and Human Participant Challenges.

    Science.gov (United States)

    Burke, Lora E; Shiffman, Saul; Music, Edvin; Styn, Mindi A; Kriska, Andrea; Smailagic, Asim; Siewiorek, Daniel; Ewing, Linda J; Chasens, Eileen; French, Brian; Mancino, Juliet; Mendez, Dara; Strollo, Patrick; Rathbun, Stephen L

    2017-03-15

    Ecological momentary assessment (EMA) assesses individuals' current experiences, behaviors, and moods as they occur in real time and in their natural environment. EMA studies, particularly those of longer duration, are complex and require an infrastructure to support the data flow and monitoring of EMA completion. Our objective is to provide a practical guide to developing and implementing an EMA study, with a focus on the methods and logistics of conducting such a study. The EMPOWER study was a 12-month study that used EMA to examine the triggers of lapses and relapse following intentional weight loss. We report on several studies that informed the implementation of the EMPOWER study: (1) a series of pilot studies, (2) the EMPOWER study's infrastructure, (3) training of study participants in use of smartphones and the EMA protocol and, (4) strategies used to enhance adherence to completing EMA surveys. The study enrolled 151 adults and had 87.4% (132/151) retention rate at 12 months. Our learning experiences in the development of the infrastructure to support EMA assessments for the 12-month study spanned several topic areas. Included were the optimal frequency of EMA prompts to maximize data collection without overburdening participants; the timing and scheduling of EMA prompts; technological lessons to support a longitudinal study, such as proper communication between the Android smartphone, the Web server, and the database server; and use of a phone that provided access to the system's functionality for EMA data collection to avoid loss of data and minimize the impact of loss of network connectivity. These were especially important in a 1-year study with participants who might travel. It also protected the data collection from any server-side failure. Regular monitoring of participants' response to EMA prompts was critical, so we built in incentives to enhance completion of EMA surveys. During the first 6 months of the 12-month study interval, adherence to

  15. The relationship between wealth and loneliness among older people across Europe: Is social participation protective?

    Science.gov (United States)

    Niedzwiedz, Claire L; Richardson, Elizabeth A; Tunstall, Helena; Shortt, Niamh K; Mitchell, Richard J; Pearce, Jamie R

    2016-10-01

    1. Examine the relationship between household wealth, social participation and loneliness among older people across Europe. 2. Investigate whether relationships vary by type of social participation (charity/volunteer work, sports/social clubs, educational/training course, and political/community organisations) and gender. 3. Examine whether social participation moderates the association between wealth and loneliness. Data (N=29,795) were taken from the fifth wave of the Survey of Health, Ageing and Retirement in Europe (SHARE), which was collected during 2013 from 14 European countries. Loneliness was measured using the short version of the Revised-University of California, Los Angeles (R-UCLA) Loneliness Scale. We used multilevel logistic models stratified by gender to examine the relationships between variables, with individuals nested within countries. The risk of loneliness was highest in the least wealthy groups and lowest in the wealthiest groups. Frequent social participation was associated with a lower risk of loneliness and moderated the association between household wealth and loneliness, particularly among men. Compared to the wealthiest men who often took part in formal social activities, the least wealthy men who did not participate had greater risk of loneliness (OR=1.91, 95% CI: 1.44 to 2.51). This increased risk was not observed among the least wealthy men who reported frequent participation in formal social activities (OR=1.12, 95% CI: 0.76 to 1.67). Participation in external social activities may help to reduce loneliness among older adults and potentially acts as a buffer against the adverse effects of socioeconomic disadvantage. Copyright © 2016 Elsevier Inc. All rights reserved.

  16. Promoting the legitimacy and agency of new graduate nurses' participation in nursing research.

    Science.gov (United States)

    Matikainen, Mary Ann

    2017-06-01

    This paper explores the legitimacy and agency of new graduate mental health nurses to participate in research activities as a regular part of their professional nursing role. There is a wealth of literature describing personal and organisational factors that act as barriers to nurses' engagement in research and overcoming these barriers remains a challenge for health organisations. Some new graduate nurses are well positioned to contribute to research and yet the literature has given little attention to this specific cohort. This paper will show how facilitating new graduates' participation in research benefits the new graduate and the health service. New graduates learn research skills from experienced researchers and this ensures a sustainable future workforce of researchers. Employers who support staff to pursue professional challenges such as research are more likely to generate organisational commitment and loyalty amongst staff.

  17. Risk perception and decision processes underlying informed consent to research participation.

    Science.gov (United States)

    Reynolds, William W; Nelson, Robert M

    2007-11-01

    According to the rational choice model, informed consent should consist of a systematic, step-by-step evaluation of all information pertinent to the treatment or research participation decision. Research shows that people frequently deviate from this normative model, however, employing decision-making shortcuts, or heuristics. In this paper we report findings from a qualitative study of 32 adolescents and (their) 31 parents who were recruited from two Northeastern US hospitals and asked to consider the risks of and make hypothetical decisions about research participation. The purpose of this study was to increase our understanding of how diabetic and at-risk adolescents (i.e., those who are obese and/or have a family history of diabetes) and their parents perceive risks and make decisions about research participation. Using data collected from adolescents and parents, we identify heuristic decision processes in which participant perceptions of risk magnitude, which are formed quickly and intuitively and appear to be based on affective responses to information, are far more prominent and central to the participation decision than are perceptions of probability. We discuss participants' use of decision-making heuristics in the context of recent research on affect and decision processes, and we consider the implications of these findings for researchers.

  18. Family and physician influence on asthma research participation decisions for adolescents: the effects of adolescent gender and research risk.

    Science.gov (United States)

    Brody, Janet L; Scherer, David G; Annett, Robert D; Turner, Charles; Dalen, Jeanne

    2006-08-01

    There is considerable ethical and legal ambiguity surrounding the role of adolescents in the decision-making process for research participation. Depending on the nature of the study and the regulations involved, adolescents may have independent responsibility for providing informed consent, they may be asked to provide their assent, or they may be completely excluded from the decision-making process. This study examined parent and adolescent perceptions of decision-making authority and sources of influence on adolescent research participation decisions, and examined whether perceptions of influence differed based on adolescent gender and level of research risk. Adolescents (n = 36) with asthma and their parents reviewed 9 pediatric research protocols, decided whether they would choose to participate, rated the extent they would be responsible for the actual decision, and indicated the ability of family and physician to influence their decisions. Multivariate analyses of variance were used to evaluate differences in perceptions of decision-making authority and sources of influence on the decisions. Adolescents were less willing to cede decision making authority to parents than parents anticipated. Parents and adolescents acknowledged a greater openness to influence from physicians than from family for above minimal risk studies. Parents were more willing to consider opinions from male adolescents. Adolescents desire responsibility for research participation decisions, though parents may not share these views. Physicians' views on research participation are important to families, especially for above minimal risk studies. Parents may grant more decision-making autonomy to adolescent males than to females. Researchers, physicians, and institutions play a key role in facilitating the ethical enrollment of adolescents into biomedical research. Educational, policy, and oversight processes that support both adolescent autonomy and parental responsibility for research

  19. Strategies for Enhancing Family Participation in Research in the ICU: Findings From a Qualitative Study.

    Science.gov (United States)

    Dotolo, Danae; Nielsen, Elizabeth L; Curtis, J Randall; Engelberg, Ruth A

    2017-08-01

    Family members of critically ill patients who participate in research focused on palliative care issues have been found to be systematically different from those who do not. These differences threaten the validity of research and raise ethical questions about worsening disparities in care by failing to represent diverse perspectives. This study's aims were to explore: 1) barriers and facilitators influencing family members' decisions to participate in palliative care research; and 2) potential methods to enhance research participation. Family members who were asked to participate in a randomized trial testing the efficacy of a facilitator to improve clinician-family communication in the intensive care unit (ICU). Family members who participated (n = 17) and those who declined participation (n = 7) in Family Communication Study were interviewed about their recruitment experiences. We also included family members of currently critically ill patients to assess current experiences (n = 4). Interviews were audio-recorded and transcribed. Investigators used thematic analysis to identify factors influencing family members' decisions. Transcripts were co-reviewed to synthesize codes and themes. Three factors influencing participants' decisions were identified: Altruism, Research Experience, and Enhanced Resources. Altruism and Research Experience described intrinsic characteristics that are less amenable to strategies for improving participation rates. Enhanced Resources reflects families' desires for increased access to information and logistical and emotional support. Family members found their recruitment experiences to be positive when staff were knowledgeable about the ICU, sensitive to the stressful circumstances, and conveyed a caring attitude. By training research staff to be supportive of families' emotional needs and need for logistical knowledge about the ICU, recruitment of a potentially more diverse sample of families may be enhanced. Copyright © 2017

  20. Diagnostic Labels, Stigma, and Participation in Research Related to Dementia and Mild Cognitive Impairment

    Science.gov (United States)

    Garand, Linda; Lingler, Jennifer H.; Conner, Kyaien O.; Dew, Mary Amanda

    2010-01-01

    Health care professionals use diagnostic labels to classify individuals for both treatment and research purposes. Despite their clear benefits, diagnostic labels also serve as cues that activate stigma and stereotypes. Stigma associated with the diagnostic labels of dementia and mild cognitive impairment (MCI) can have a significant and negative impact on interpersonal relationships, interactions with the health care community, attitudes about service utilization, and participation in clinical research. The impact of stigma also extends to the family caregivers of individuals bearing such labels. In this article, we use examples from our investigations of individuals with dementia or MCI and their family caregivers to examine the impact of labeling and stigma on clinical research participation. We also discuss how stigma can affect numerous aspects of the nursing research process. Strategies are presented for addressing stigma-related barriers to participation in clinical research on dementia and MCI. PMID:20077972

  1. Parents' experiences of participation in physical activities for children with cerebral palsy - protecting and pushing towards independence.

    Science.gov (United States)

    Lauruschkus, Katarina; Nordmark, Eva; Hallström, Inger

    2017-04-01

    To explore how parents of children with cerebral palsy (CP) experience their child's participation in physical activities and to identify facilitators and barriers for being physically active and reducing sedentary behaviour. Twenty-five parents of sixteen children, aged 8-11 years old with CP, with varying gross motor, cognitive and communicative functions and with different cultural backgrounds, participated in focus group or individual interviews. Content analysis was used for analysis. Five subcategories addressing children's participation in physical activity were found: "Belonging and taking space in the family", "Important persons facilitating and hindering", "Friends important but hard to get", "Good for the body but challenging" and "Availability and opting out possibilities". The subcategories built the main category "Protecting and pushing towards independence", expressing the challenges parents experienced when their child wanted to be physically active. Parents desire competent persons to be available for support in participation in physical activities. They want support in finding friends for their child to be physically active with. Family culture and attitudes affect their child's motivation for being physically active and should be taken into account when designing interventions for increased participation in physical activities and for reduced sedentary behaviour in children with disabilities. Implications for Rehabilitation Friends and competent adults facilitate participation in physical activities and reduce sedentary behaviour. Information on accessible and tailored physical activities is an important facilitator for participation in physical activities. Service planning and design of interventions may be facilitated by taking the individual family culture into account.

  2. The Need for Participative Interventions in Child Protection: Perspectives from Nuevo León State

    Directory of Open Access Journals (Sweden)

    Elena Cabiati

    2015-05-01

    Full Text Available This article examines characteristics and social work practices within the Mexican child protection system by combining observations of practice with the voices and the views expressed by managers, social workers, families, children and young people. The results of the study confirm the need for and desire to adopt a participatory approach, in preference to the individualistic ideas that currently dominates practice. The traditional Mexican culture, the implicit and explicit representation of family and the social problems connected to drug trade conflicts appear to have contributed to a child protection system with a “child-centered perspective”, characterized by asymmetric power relationships, lacking the empowerment and engagement of service users. These practices seem to be counter to the legislative framework and appear ineffective. Reflections regarding how family needs are identified, understood and addressed reveal a commitment to find new ways of working with families among service users and providers. However, the biggest challenge in the Mexican context is to balance the protection of the child with support to their parents; without ensuring the former, the latter will remain a partial and counter-productive work practice.

  3. Multiple Comorbidities and Interest in Research Participation Among Clients of a Nonprofit Food Distribution Site.

    Science.gov (United States)

    Higashi, Robin T; Craddock Lee, Simon J; Leonard, Tammy; Cuate, Erica L; Cole, Jay; Pruitt, Sandi L

    2015-10-01

    Persons accessing food from nonprofit distribution sites face numerous challenges and typically have significant unmet health needs. However, given limited and intermittent healthcare system engagement, this vulnerable population is underrepresented in clinical research. We sought to better understand the health needs of a nonclinical population to inform future research and interventions. Focus groups were conducted in English (n = 4) and Spanish (n = 4) with clients of Crossroads Community Services (CCS), the largest distributor of North Texas Food Bank. Discussions probed participants' health status, healthcare utilization, understanding and utilization of mammography, and attitudes toward participation in research. Participants included 42 CCS clients, primarily Hispanic or African American women. Participants reported multiple comorbid conditions among household members, yet utilization of health services was often limited by cost. The majority expressed interest in participating in research to communicate their health concerns and obtain emotional support. CCS clients represent a high-need, under-reached population willing to engage in health-related research that affords them opportunity to connect with peers in group settings and obtain information to improve management of daily life challenges. The Community Assistance Research (CARe) Initiative, a community-academic collaboration, establishes a much-needed opportunity for ongoing clinical research and intervention among this underserved population. © 2015 Wiley Periodicals, Inc.

  4. Beliefs and attitudes towards participating in genetic research – a population based cross-sectional study

    Directory of Open Access Journals (Sweden)

    Kerath Samantha M

    2013-02-01

    Full Text Available Abstract Background Biobanks have the potential to offer a venue for chronic disease biomarker discovery, which would allow for disease early detection and for identification of carriers of a certain predictor biomarker. To assess the general attitudes towards genetic research and participation in biobanks in the Long Island/Queens area of New York, and what factors would predict a positive view of such research, participants from the NSLIJ hospital system were surveyed. Methods Participants were recruited at six hospital centers in the NSLIJ system during the summers of 2009 and again in 2011 (n = 1,041. Those who opted to participate were given a questionnaire containing 22 questions assessing demographics, lifestyle and attitudes towards genetic research. These questions addressed individual participant’s beliefs about the importance of genetic research, willingness to participate in genetic research themselves, and their views on informed consent issues. Results Respondents took a generally positive view of genetic research in general, as well as their own participation in such research. Those with reservations were most likely to cite concerns over the privacy of their medical and genetic information. Those who were married tended to view genetic research as important, while those in the younger age group viewed it as less important. Prior blood donation of respondents was found to be a predictor of their approval for genetic research. Demographic factors were not found to be predictive of personal willingness to participate in genetic research, or of approval for the opt-out approach to consent. Conclusions While respondents were generally inclined to approve of genetic research, and those who disapproved did not do so based on an underlying moral objection to such research, there is a disconnect between the belief in the importance of genetic research and the willingness of individuals to participate themselves. This indicates a

  5. Ecology and Ethics in Participatory Collaborative Action Research: An Argument for the Authentic Participation of Students in Educational Research

    Science.gov (United States)

    Collins, Steve

    2004-01-01

    A conception of action research is offered that is collaborative, participatory, targets ethical issues and includes students. Collaboration is "organic" in that all members share the goal of the research and are interdependent in pursuing that goal. Participation is authentic, requiring a continuing negotiation of planning, roles, power…

  6. Research of the punch interaction with composite protective panel

    OpenAIRE

    Kulakov, N.; Lyubin, A.

    2008-01-01

    The work examines the structure of a protection composite panel consisting of a crushing layer (ceramic discrete elements of a cylindrical shape) and a restraining layer below (metallic leaf). This protection panel can be used for an armour-piercing bullet protection of the car. Here is the strength calculation of ceramic elements and metallic protective layer dynamic interaction under bullet impact. The problem was solved under a variety of protection panel parameters in order to define thei...

  7. Informing potential participants about research: observational study with an embedded randomized controlled trial.

    Directory of Open Access Journals (Sweden)

    Helen M Kirkby

    Full Text Available OBJECTIVES: To assess: 1 the feasibility of electronic information provision; 2 gather evidence on the topics and level of detail of information potential research participant's accessed; 3 to assess satisfaction and understanding. DESIGN: Observational study with an embedded randomised controlled trial. SETTING: Low risk intervention study based in primary care. PARTICIPANTS: White British & Irish, South Asian and African-Caribbean subjects aged between 40-74 years eligible for a blood pressure monitoring study. INTERVENTIONS: PDF copy of the standard paper participant information sheet (PDF-PIS and an electronic Interactive Information Sheet (IIS where participants could choose both the type and level of detail accessed. MAIN OUTCOME MEASURES: 1 Proportion of participants providing an email address and accessing electronic information 2 Willingness to participate in a recruitment clinic. 3 Type and depth of information accessed on the IIS. 4 Participant satisfaction and understanding. RESULTS: 1160 participants were eligible for the study. Of these, 276 (24% provided an active email address, of whom 84 did not respond to the email. 106 responded to the email but chose not to access any electronic information and were therefore ineligible for randomisation. 42 were randomised to receive the PDF-PIS and 44 to receive the IIS (with consent rates of 48% and 36%, respectively; odds ratio 0.6, 95% confidence interval 0.25 to 1.4. Electronic observation of information accessed by potential participants showed 41% chose to access no information and only 9% accessed the detail presented on the Research Ethics Committee approved participant information sheet before booking to attend a recruitment clinic for the intervention study. 63 of the 106 participants (59% who chose not to access any electronic information also booked an appointment. CONCLUSIONS: Current written information about research may not be read, emphasising the importance of the consent

  8. Research and Development of Protection OPC server for China advanced research reactor digital monitoring system

    International Nuclear Information System (INIS)

    Jia Yuwen; Xu Qiguo

    2012-01-01

    OPC server was developed as I/O driver to communicate the digital monitoring system of China Advanced Research Reactor iFIX and protection system. The framework and working principle of the OPC server were researched, and an effective method was developed to resolve the special communication protocol. After commissioning and testing, the results show that this method is reliable and stable, makes the system easy to configure, and can reduce the complexity of the system. (authors)

  9. SecureMA: protecting participant privacy in genetic association meta-analysis

    OpenAIRE

    Xie, Wei; Kantarcioglu, Murat; Bush, William S.; Crawford, Dana; Denny, Joshua C.; Heatherly, Raymond; Malin, Bradley A.

    2014-01-01

    Motivation: Sharing genomic data is crucial to support scientific investigation such as genome-wide association studies. However, recent investigations suggest the privacy of the individual participants in these studies can be compromised, leading to serious concerns and consequences, such as overly restricted access to data.

  10. Social participation: redesign of education, research, and practice in occupational therapy*.

    Science.gov (United States)

    Piškur, Barbara

    2013-01-01

    There is growing attention to participation and social participation in literature and policy reports. Occupational therapists strongly believe that creating coherence between the person's occupations and environment will facilitate participation of each individual. Nowadays, societal developments such as "health literacy and self-management", "Web 2.0 social media", "empowering communities", and "Nothing About Us Without Us" increase opportunities for people to interact on different levels of social participation. Social participation can be used as an outcome, though it can also be seen as a means to change society and to develop solutions for barriers experienced by people with chronic diseases or disabilities. Societal developments will have an impact on social participation in terms of supporting each other and contributing to society. Additionally, these changes will have a major influence on the way we educate, conduct research, and deliver occupational therapy practice.

  11. Radiation protection research and studies after the Chernobyl accident

    International Nuclear Information System (INIS)

    Madelmont, C.; Coulon, R.; Legrand, B.; Manesse, D.; Rzepka, J.P.

    1989-04-01

    The effects on the environment of the Chernobyl Power Plant accident, which happened in the reactors unit 4, are analyzed. The aim of the study is to show the main fields of research and development to be considered, in order to improve the knowledge on public or local radiation protection. The following aspects of the problem are discussed: the long range atmospheric transfer, the environment monitoring, the problems related to the food chain transfers, the environment recovery and the estimation of the sanitary effects. The Chernobyl disaster confirms: the priority of special plans of action to protect the surrounding population; that the special plans of action must be followed by after-disaster actions, which take into account methods for the environment recovery; that the conventional systematic approach can not be satisfactorily applied to manage such a critical situation, and a new one must be developed. Moreover, the identification of the most exposed (population) groups, far from the nearby affected area, are to be considered [fr

  12. Decision-making by adolescents and parents of children with cancer regarding health research participation.

    Science.gov (United States)

    Read, Kate; Fernandez, Conrad Vincent; Gao, Jun; Strahlendorf, Caron; Moghrabi, Albert; Pentz, Rebecca Davis; Barfield, Raymond Carlton; Baker, Justin Nathaniel; Santor, Darcy; Weijer, Charles; Kodish, Eric

    2009-09-01

    Low rates of participation of adolescents and young adults (AYAs) in clinical oncology trials may contribute to poorer outcomes. Factors that influence the decision of AYAs to participate in health research and whether these factors are different from those that affect the participation of parents of children with cancer. This is a secondary analysis of data from validated questionnaires provided to adolescents (>12 years old) diagnosed with cancer and parents of children with cancer at 3 sites in Canada (Halifax, Vancouver, and Montreal) and 2 in the United States (Atlanta, GA, and Memphis, TN). Respondents reported their own research participation and cited factors that would influence their own decision to participate in, or to provide parental authorization for their child to participate in health research. Completed questionnaire rates for AYAs and parents were 86 (46.5%) of 185 and 409 (65.2%) of 627, respectively. AYAs (n = 86 [67%]) and parents (n = 409 [85%]) cited that they would participate in research because it would help others. AYAs perceived pressure by their family and friends (16%) and their physician (19%). Having too much to think about at the time of accrual was an impediment to both groups (36% AYAs and 47% parents). The main deterrent for AYAs was that research would take up too much time (45%). Nonwhite parents (7 of 56 [12.5%]) were more apt to decline than white parents (12 of 32 [3.7%]; P < .01). AYAs identified time commitment and having too much to think about as significant impediments to research participation. Addressing these barriers by minimizing time requirements and further supporting decision-making may improve informed consent and impact on enrollment in trials.

  13. Protecting clinical data in PACS, teleradiology systems, and research environments

    Science.gov (United States)

    Meissner, Marion C.; Collmann, Jeff R.; Tohme, Walid G.; Mun, Seong K.

    1997-05-01

    As clinical data is more widely stored in electronic patient record management systems and transmitted over the Internet and telephone lines, it becomes more accessible and therefore more useful, but also more vulnerable. Computer systems such as PACS, telemedicine applications, and medical research networks must protect against accidental or deliberate modification, disclosure, and violation of patient confidentiality in order to be viable. Conventional wisdom in the medical field and among lawmakers legislating the use of electronic medical records suggests that, although it may improve access to information, an electronic medical record cannot be as secure as a traditional paper record. This is not the case. Information security is a well-developed field in the computer and communications industry. If medical information systems, such as PACS, telemedicine applications, and research networks, properly apply information security techniques, they can ensure the accuracy and confidentiality of their patient information and even improve the security of their data over a traditional paper record. This paper will elaborate on some of these techniques and discuss how they can be applied to medical information systems. The following systems will be used as examples for the analysis: a research laboratory at Georgetown University Medical Center, the Deployable Radiology system installed to support the US Army's peace- keeping operation in Bosnia, a kidney dialysis telemedicine system in Washington, D.C., and various experiences with implementing and integrating PACS.

  14. People involved in radiation research and protection - an historical perspective

    International Nuclear Information System (INIS)

    Toussaint, L.F.

    2010-01-01

    Full text: The lives of selected people involved in radiation research are covered in two parts: 1. history of radiation and radioactivity; and 2. historical aspects of radiation and radiation protection in Western Australia. History of radiation/radioactivity: The background of some of the key people involved in early radiation research is discussed. These include Rontgen and Becqucrel who undertook early research into X-rays and radioactivity respectively. As well as the radiation hazards which early radiation scientists faced, there were also social pressures, as exemplified by the life of women such as Marie Curie, particularly after the death of her husband Pierre. Despite this being the time of the so-called 'beautiful years' in Europe, where there was a friendly exchange of ideas between scientists from various countries, there were also protracted disagreements. Some of the scientific findings of the Curies' daughter (Irene Joliot-Curie) and husband (Frederic Joliot-Curie) were vigorously disputed by Lisa Meitner (and colleague Otto Hahn) in Vienna. The 'beautiful years' came to an end when politics intruded and scientists such as Lisa Meitner had to flee from persecution. The splitting of the atom and realisation (by Leo Szilard) that a chain reaction was possible, led to political barriers being erected around scientists. With Europe poised for war, the implication of this science for warfare application was cause for concern among many of the normally free thinking and co-operative scientists. Secrecy now prevailed.

  15. Radiation protection planning for decommissioning of research reactor facilities

    International Nuclear Information System (INIS)

    Jackson, Roger; Harman, Neil; Craig, David; Fecitt, Lorna; Lobach, Yuri; Gorlinskij, Juri; Kolyadin, Vyacheslav; Pavlenko, Vytali

    2008-01-01

    The MR reactor at the Russian Research Centre Kurchatov Institute (RRCKI), Moscow was a 50 MW multipurpose material testing and research reactor equipped with nine experimental loop facilities to test prototype fuel for various nuclear power reactors being developed. The reactor was shut down in 1993 and de-fuelled. The experimental loops are located in basement rooms around the reactor. The nature of the research into the characteristics of fuel design and coolant chemistry resulted in fission products and activation products in the test loop equipment. Decommissioning of the loops therefore presents a number of challenges. In addition the city of Moscow has expanded such that the RRC KI is now surrounded by housing which had to be taken into account in the radiological protection planning. This paper describes the techniques proposed to undertake the dismantling operations in order to minimise the radiation exposure to workers and members of the public. Estimates have been made of the worker doses which could be incurred during the dismantling process and the environmental impacts which could occur. These are demonstrated to be as low as reasonably achievable. The work was funded by the UK Department of Business Enterprise and Regulatory Reform (DBERR) (formerly the Department of Trade and Industry) under the Nuclear Safety Programme (NSP) set up to address nuclear safety issues in the Former Soviet Union. (author)

  16. Challenges in the Use of Social Networking Sites to Trace Potential Research Participants

    Science.gov (United States)

    Marsh, Jackie; Bishop, Julia C.

    2014-01-01

    This paper reports on a number of challenges faced in tracing contributors to research projects that were originally conducted many decades previously. The need to trace contributors in this way arises in projects which focus on involving research participants in previous studies who have not been maintained on a database, or with whom the…

  17. Facilitating the participation of people with aphasia in research : a description of strategies

    NARCIS (Netherlands)

    Dalemans, R.; Wade, D.T.; van den Heuvel, W.J.A.; de Witte, L.P.

    2009-01-01

    Background: People with aphasia are often excluded from research because of their communication impairments, especially when an investigation into the communication impairment is not the primary goal. In our research concerning social participation of people with aphasia, we wanted to include people

  18. Educating for a Critical Democracy: Civic Participation Reimagined in the Council of Youth Research

    Science.gov (United States)

    Mirra, Nicole; Morrell, Ernest D.; Cain, Ebony; Scorza, D'Artagnan; Ford, Arlene

    2013-01-01

    This article explores civic learning, civic participation, and the development of civic agency within the Council of Youth Research (the Council), a program that engages high school students in youth participatory action research projects that challenge school inequalities and mobilize others in pursuit of educational justice. We critique the…

  19. Our Anonymous Online Research Participants Are Not Always Anonymous: Is This a Problem?

    Science.gov (United States)

    Dawson, Phillip

    2014-01-01

    When educational research is conducted online, we sometimes promise our participants that they will be anonymous--but do we deliver on this promise? We have been warned since 1996 to be careful when using direct quotes in Internet research, as full-text web search engines make it easy to find chunks of text online. This paper details an empirical…

  20. Children's Decision-Making Involvement About Research Participation: Associations With Perceived Fairness and Self-Efficacy.

    Science.gov (United States)

    Miller, Victoria A; Feudtner, Chris; Jawad, Abbas F

    2017-04-01

    The primary objective of this study was to examine the associations of children's involvement in decisions about research participation with their perceptions of the decision-making process and self-efficacy. Participants were children (ages 8-17) who enrolled in research studies in the prior 2 months. Children completed a questionnaire that yielded three decision-making involvement subscales: Researcher Engages Child, Researcher Supports Autonomy, and Child Participates. Children reported on fairness of the decision-making process and health-related decision self-efficacy. After adjusting for age, higher scores on Researcher Engages Child were associated with greater self-efficacy, and higher scores on Researcher Supports Autonomy were associated with greater perceived fairness. These data underscore the potential importance of researcher-child interactions about research participation when assent is sought, including proactively involving children in the decision by asking for their opinions and communicating their central role in the decision, which are likely to be more meaningful to children than receiving information or signing a form.

  1. Low participation rates amongst Asian women: implications for research in reproductive medicine.

    Science.gov (United States)

    Talaulikar, V S; Hussain, S; Perera, A; Manyonda, I T

    2014-03-01

    The last two decades have witnessed tremendous advances in the field of reproductive medicine, especially assisted reproductive technology and stem cell research. As research continues in future, it is vital to ensure that individuals from all ethnic backgrounds are represented in the study populations so that the findings of the research can be generalised for the benefit of all. Many studies, however, have noted a trend of low participation rates amongst Asian women in reproductive research. Inequalities in the ethnicity of research participants can be a source of substantial bias, and have major ethical and scientific ramifications. Several factors such as educational status, fear of wrong-doing, communication barriers, and socio-cultural beliefs have been suggested to play a role. There is a need for further exploration of the factors influencing Asian women's decision to accept or decline participation in reproductive research and for development of effective targeted strategies for research recruitment with the aim of encouraging research participation as well as donation of cryopreserved embryos or other reproductive tissues. Copyright © 2013 Elsevier Ireland Ltd. All rights reserved.

  2. Building Bridges across Knowledge Systems: Ubuntu and Participative Research Paradigms in Bantu Communities

    Science.gov (United States)

    Muwanga-Zake, J. W. F.

    2009-01-01

    This paper discusses how Ubuntu as a philosophy and a methodology was used among Bantu in South Africa together with participative Western paradigms in evaluating an educational computer game. The paper argues that research among Bantu has to articulate research experiences within Ubuntu paradigms if valid outcomes are to be realised. (Contains 1…

  3. Factors Influencing the Research Participation of Adults with Autism Spectrum Disorders

    Science.gov (United States)

    Haas, Kaaren; Costley, Debra; Falkmer, Marita; Richdale, Amanda; Sofronoff, Kate; Falkmer, Torbjörn

    2016-01-01

    Recruiting adults with autism spectrum disorders (ASD) into research poses particular difficulties; longitudinal studies face additional challenges. This paper reports on a mixed methods study to identify factors influencing the participation in longitudinal autism research of adults with ASD, including those with an intellectual disability, and…

  4. Note On Research Design For The Study Of Community Participation In Health Care Programmes

    Directory of Open Access Journals (Sweden)

    Rifkin Susan B

    1986-01-01

    Full Text Available After describing types of research designs for the study of community participation in health care programmes, this paper examines one methodology, the quantitative methodology, the quantitative methodology, in detail. It presents some of the major attractions and limitations of this approach. The attractions include the need for evaluation of success and failure and of cost effectiveness of programmes. The limitations include the inability of the approach to deal with definitions and interventions that cannot be quantitified and the difficulty of identifying casual relationship between interventions and outcomes. These characteristics are illustrated by a case by a medical school in Asia. Research design, research developments and research outcomes are described and analysed. The paper concludes that an alternative analysis which examines the linkages between participation and health improvements would be more useful as it would allow the political, social and economic dimensions of community participation to be examined.

  5. Improving subject recruitment, retention, and participation in research through Peplau's theory of interpersonal relations.

    Science.gov (United States)

    Penckofer, Sue; Byrn, Mary; Mumby, Patricia; Ferrans, Carol Estwing

    2011-04-01

    Recruitment and retention of persons participating in research is one of the most significant challenges faced by investigators. Although incentives are often used to improve recruitment and retention, evidence suggests that the relationship of the patient to study personnel may be the single, most important factor in subject accrual and continued participation. Peplau's theory of interpersonal relations provides a framework to study the nurse-patient relationship during the research process. In this paper the authors provide a brief summary of research strategies that have been used for the recruitment and retention of subjects and an overview of Peplau's theory of interpersonal relations including its use in research studies. In addition, a discussion of how this theory was used for the successful recruitment and retention of women with type 2 diabetes who participated in a clinical trial using a nurse-delivered psychoeducational intervention for depression is addressed.

  6. Do East Asian and Euro-Canadian women differ in sexual psychophysiology research participation?

    Science.gov (United States)

    Woo, Jane S T; Brotto, Lori A; Yule, Morag A

    2010-07-01

    Evidence from studies of ethnic differences in sexual conservativeness and Papanicolaou (Pap) testing behaviors suggests that there may be culture-linked differences in rates of participation in physically invasive sexuality studies, resulting in volunteer bias. The effects of ethnicity and acculturation on participation in female psychophysiological sexual arousal research were investigated in a sample of Euro-Canadian (n = 50) and East Asian (n = 58) women. Participants completed a battery of questionnaires and were given either course credits or $10 for their participation. Participants were then informed about the opportunity to participate in a second phase of the study, which involved psychophysiological sexual arousal testing and which was completely optional. Contrary to expectations, the results showed that the East Asian women were more likely to participate in Phase 2 than the Euro-Canadian women. Among the East Asian women, greater heritage acculturation and lower mainstream acculturation predicted a lower likelihood of Phase 2 participation. The findings suggest the need to be wary of overgeneralizing female psychophysiological sexual arousal research results and may have implications for improving Pap testing behaviors in East Asian women.

  7. Suitability of customer relationship management systems for the management of study participants in biomedical research.

    Science.gov (United States)

    Schwanke, J; Rienhoff, O; Schulze, T G; Nussbeck, S Y

    2013-01-01

    Longitudinal biomedical research projects study patients or participants over a course of time. No IT solution is known that can manage study participants, enhance quality of data, support re-contacting of participants, plan study visits, and keep track of informed consent procedures and recruitments that may be subject to change over time. In business settings management of personal is one of the major aspects of customer relationship management systems (CRMS). To evaluate whether CRMS are suitable IT solutions for study participant management in biomedical research. Three boards of experts in the field of biomedical research were consulted to get an insight into recent IT developments regarding study participant management systems (SPMS). Subsequently, a requirements analysis was performed with stakeholders of a major biomedical research project. The successive suitability evaluation was based on the comparison of the identified requirements with the features of six CRMS. Independently of each other, the interviewed expert boards confirmed that there is no generic IT solution for the management of participants. Sixty-four requirements were identified and prioritized in a requirements analysis. The best CRMS was able to fulfill forty-two of these requirements. The non-fulfilled requirements demand an adaption of the CRMS, consuming time and resources, reducing the update compatibility, the system's suitability, and the security of the CRMS. A specific solution for the SPMS is favored instead of a generic and commercially-oriented CRMS. Therefore, the development of a small and specific SPMS solution was commenced and is currently on the way to completion.

  8. Employees' perspectives on ethically important aspects of genetic research participation: a pilot study.

    Science.gov (United States)

    Roberts, Laura Weiss; Warner, Teddy D; Geppert, Cynthia M A; Rogers, Melinda; Green Hammond, Katherine A

    2005-01-01

    Insights from genetic research may greatly improve our understanding of physical and mental illnesses and assist in the prevention of disease. Early experience with genetic information suggests that it may lead to stigma, discrimination, and other psychosocial harms, however, and this may be particularly salient in some settings, such as the workplace. Despite the importance of these issues, little is known about how healthy adults, including workers, perceive and understand ethically important issues in genetic research pertaining to physical and mental illness. We developed, pilot tested, and administered a written survey and structured interview to 63 healthy working adults in 2 settings. For this paper, we analyzed a subset of items that assessed attitudes toward ethically relevant issues related to participation in genetic research on physical and mental illness, such as its perceived importance, its acceptability for various populations, and appropriate motivations for participation. Our respondents strongly endorsed the importance of physical and mental illness genetic research. They viewed participation as somewhat to very acceptable for all 12 special population groups we asked about, including persons with mental illness. They perceived more positives than negatives in genetic research participation, giving neutral responses regarding potential risks. They affirmed many motivations for participation to varying degrees. Men tended to affirm genetic research participation importance, acceptability, and motivations more strongly than women. Healthy working persons may be willing partners in genetic research related to physical and mental illnesses in coming years. This project suggests the feasibility and value of evidence-based ethics inquiry, although further study is necessary. Evidence regarding stakeholders' perspectives on ethically important issues in science may help in the development of research practices and policy.

  9. Promising and Established Investigators' Experiences Participating in the National Athletic Trainers' Association Foundation Research Mentor Program.

    Science.gov (United States)

    Nottingham, Sara L; Mazerolle, Stephanie M; Barrett, Jessica L

    2017-04-01

      Mentorship is a helpful resource for individuals who transition from doctoral student to tenure-track faculty member. The National Athletic Trainers' Association (NATA) Research & Education Foundation offers a Research Mentor Program to provide mentorship to promising investigators, particularly as they work to establish independent lines of research.   To gain the perspectives of promising and established investigators on their participation in the NATA Foundation Research Mentor Program.   Qualitative, phenomenological research.   Higher education institutions.   Seven promising investigators (5 women, 2 men) and 7 established investigators (2 women, 5 men), all of whom had completed the NATA Foundation Research Mentor Program. Data Collection and Analysis We developed and piloted intervi: ew guides designed to gain participants' perspectives on their experiences participating in the NATA Foundation Research Mentor Program. Semistructured telephone interviews were completed with each individual and transcribed verbatim. Data were analyzed using a phenomenological approach, and saturation was obtained. Trustworthiness was established with the use of member checking, multiple-analyst triangulation, and data-source triangulation.   Three themes emerged from the interviews: (1) motivation, (2) collaboration, and (3) resources. Participants were motivated to become involved because they saw the value of mentorship, and mentees desired guidance in their research. Participants believed that collaboration on a project contributed to a positive relationship, and they also desired additional program and professional resources to support novice faculty.   Promising and established investigators should be encouraged to engage in mentoring relationships to facilitate mentees' research agendas and professional development. The NATA Foundation and athletic training profession may consider providing additional resources for novice faculty, such as training on

  10. Redes En Acción. Increasing Hispanic participation in cancer research, training, and awareness.

    Science.gov (United States)

    Ramirez, Amelie G; Talavera, Gregory A; Marti, Jose; Penedo, Frank J; Medrano, Martha A; Giachello, Aida L; Pérez-Stable, Eliseo J

    2006-10-15

    Hispanics are affected by many health care disparities. The National Cancer Institute (NCI), through its Special Populations Branch, is supporting networking and capacity-building activities designed to increase Hispanic participation and leadership in cancer research. Redes En Acción established a national network of cancer research centers, community-based organizations, and federal partners to facilitate opportunities for junior Hispanic scientists to participate in training and research projects on cancer control. Since 2000, Redes En Acción has established a network of more than 1800 Hispanic leaders involved in cancer research and education. The project has sustained 131 training positions and submitted 29 pilot projects to NCI for review, with 16 awards for a total of $800,000, plus an additional $8.8 million in competing grant funding based on pilot study results to date. Independent research has leveraged an additional $32 million in non-Redes funding, and together the national and regional network sites have participated in more than 1400 community and professional awareness events. In addition, the program conducted extensive national survey research that provided the basis for the Redes En Acción Latino Cancer Report, a national agenda on Hispanic cancer issues. Redes En Acción has increased participation in cancer control research, training, and awareness among Hispanic scientists and within Hispanic communities. Cancer 2006. (c) 2006 American Cancer Society.

  11. ?Decision-making capacity for research participation among addicted people: a cross-sectional study?

    OpenAIRE

    Mor?n-S?nchez, In?s; Luna, Aurelio; S?nchez-Mu?oz, Maria; Aguilera-Alcaraz, Beatriz; P?rez-C?rceles, Maria D.

    2016-01-01

    Background Informed consent is a key element of ethical clinical research. Addicted population may be at risk for impaired consent capacity. However, very little research has focused on their comprehension of consent forms. The aim of this study is to assess the capacity of addicted individuals to provide consent to research. Methods 53 subjects with DSM-5 diagnoses of a Substance Use Disorder (SUD) and 50 non psychiatric comparison subjects (NPCs) participated in the survey from December 201...

  12. Ethical perspectives of children's assent for research participation: deontology and on utilitarianism.

    Science.gov (United States)

    Pieper, Pam

    2008-01-01

    Is a child's assent to participate in research that does not have the potential to directly benefit the child ethically mandated? Analysis of this particular dilemma of health care research in children using two competing theories results in different answers. Deontology (principle-based ethics) will be contrasted with utilitarianism (consequentialism). Historical cases of research with children will be used as exemplars of these two theoretical positions.

  13. Is a "wage-payment" model for research participation appropriate for children?

    Science.gov (United States)

    Bagley, Stephen J; Reynolds, William W; Nelson, Robert M

    2007-01-01

    Our goal was to evaluate the applicability of a "wage-payment" model to inducements for children to participate in research. We interviewed 42 children and adolescents between the ages of 4 and 16 years who had diabetes, asthma, seizures, or no chronic medical condition. The interview explored hypothetical participation decisions for up to 4 research scenarios. To evaluate factors that would influence children and adolescents' decision-making for research participation, we probed for the impact of monetary and other incentives. The interviews were transcribed and coded for specific themes related to money or other rewards and incentives. Older children, mainly those >9 years of age, showed an appreciation for the role and value of money through (a) an accurate concept of the material value of money in society or (b) asking for a realistic amount of money in exchange for their research participation. Younger children, primarily those payment model for compensating older children (>9 years of age) and adolescents for the time and effort of research participation is appropriate because they generally understand the meaning and value of a wage.

  14. [10 theses of the disabled persons' organizations - why participation research with a social perspective is needed].

    Science.gov (United States)

    Hinz, T

    2012-12-01

    The 5 professional associations for the disabled and the self-help organisations of disabled people state that in Germany a general concept for "participation research" is needed. This concept should address expectations and processes in developing aid services and improve self-determined participation of people with disabilities according to the human rights postulated in the UN Convention on the Rights of People with Disabilities (2006). A concept of "participation research" will go beyond the objectives and methods of i. e., disability studies - it is a focus in the context of which the social and equal participation of the disabled (especially those with multiple and/or intellectual handicaps) has to be addressed. In this context the 5 professional associations for the disabled have drafted 10 theses which are presented in the following article. © Georg Thieme Verlag KG Stuttgart · New York.

  15. Teachers' participation in research programs improves their students' achievement in science.

    Science.gov (United States)

    Silverstein, Samuel C; Dubner, Jay; Miller, Jon; Glied, Sherry; Loike, John D

    2009-10-16

    Research experience programs engage teachers in the hands-on practice of science. Program advocates assert that program participation enhances teachers' skills in communicating science to students. We measured the impact of New York City public high-school science teachers' participation in Columbia University's Summer Research Program on their students' academic performance in science. In the year before program entry, students of participating and nonparticipating teachers passed a New York State Regents science examination at the same rate. In years three and four after program entry, participating teachers' students passed Regents science exams at a rate that was 10.1% higher (P = 0.049) than that of nonparticipating teachers' students. Other program benefits include decreased teacher attrition from classroom teaching and school cost savings of U.S. $1.14 per $1 invested in the program.

  16. Research on Green Manufacturing Innovation Based on Resource Environment Protection

    Science.gov (United States)

    Jie, Xu

    2017-11-01

    Green manufacturing is a trend of manufacturing industry in the future, and is of great significance to resource protection and environmental protection. This paper first studies the green manufacturing innovation system, and then decomposes the green manufacturing innovation dimensions, and constructs the green manufacturing innovation dimension space. Finally, from the view of resource protection and environmental protection, this paper explores the path of green manufacturing innovation.

  17. A 2-1-1 research collaboration: participant accrual and service quality indicators.

    Science.gov (United States)

    Eddens, Katherine S; Alcaraz, Kassandra I; Kreuter, Matthew W; Rath, Suchitra; Greer, Regina

    2012-12-01

    In times of crises, 2-1-1 serves as a lifeline in many ways. These crises often cause a spike in call volume that can challenge 2-1-1's ability to meet its service quality standards. For researchers gathering data through 2-1-1s, a sudden increase in call volume might reduce accrual as 2-1-1 has less time to administer study protocols. Research activities imbedded in 2-1-1 systems may affect directly 2-1-1 service quality indicators. Using data from a 2-1-1 research collaboration, this paper examines the impact of crises on call volume to 2-1-1, how call volume affects research participant accrual through 2-1-1, and how research recruitment efforts affect 2-1-1 service quality indicators. t-tests were used to examine the effect of call volume on research participant accrual. Linear and logistic regressions were used to examine the effect of research participant accrual on 2-1-1 service quality indicators. Data were collected June 2010-December 2011; data were analyzed in 2012. Findings from this collaboration suggest that crises causing spikes in call volume adversely affect 2-1-1 service quality indicators as well as accrual of research participants. Administering a brief (2-3 minute) health risk assessment did not affect service quality negatively, but administering a longer (15-18 minute) survey had a modest adverse effect on these indicators. In 2-1-1 research collaborations, both partners need to understand the dynamic relationship among call volume, research accrual, and service quality and adjust expectations accordingly. If research goals include administering a longer survey, increased staffing of 2-1-1 call centers may be needed to avoid compromising service quality. Copyright © 2012 American Journal of Preventive Medicine. Published by Elsevier Inc. All rights reserved.

  18. The importance of experienced relevance and consequences related to research participation in migration and integration research

    DEFF Research Database (Denmark)

    Nielsen, Annemette; Ditlevsen, Kia

    2014-01-01

    Internationally, research within the area of health sciences has always suffered from a failure to include certain population groups in quantitative as well as qualitative research. Such population groups include migrant and ethnic minority groups. This bias in inclusion of different population...... segments has consequences for the representativity and possibility of generalizing study results and consequently may result in policies being designed to meet the needs of only the most resourceful segments of society. The lack of insight in to the experiences, attitudes of practices of certain population...... groups hence also represents a democratic problem in terms of ensuring the socially inclusive character of policies. This paper seeks to discuss how to better engage migrant populations and 'gatekeepers' around them in research. The paper takes its point of departure in three recent projects which have...

  19. Using Facebook and participant information clips to recruit emergency nurses for research.

    Science.gov (United States)

    Child, Rebekah Jay Howerton; Mentes, Janet C; Pavlish, Carol; Phillips, Linda R

    2014-07-01

    To examine the use of social networking sites in recruiting research participants. Workplace violence is an important issue for staff and patients. One workplace that reports the highest levels of violence is the emergency department. The ability to research issues such as workplace violence in real time is important in addressing them expeditiously, and social media can be used to advertise and recruit research subjects, implement studies and disseminate information. The experience of recruiting subjects through social networks, specifically Facebook, and the use of participant information clips (PICs) for advertising. A brief discussion of the history of advertising and communication using the internet is presented to provide an understanding of the trajectory of social media and implications for recruitment in general. The paper then focuses on the lead author's experience of recruiting subjects using Facebook, including its limitations and advantages, and her experience of using participant information clips. The low cost of advertising and recruiting participants this way, as well as the convenience provided to participants, resulted in almost half the study's total participants being obtained within 72 hours. Using Facebook to target a younger age range of nurses to participate in a study was successful and yielded a large number of completed responses in a short time period at little cost to the researcher. Recording the PIC was cheap, and posting it and a link to the site on pre-existing group pages was free, providing valuable viral marketing and snowball recruiting. Future researchers should not overlook using social network sites for recruitment if the demographics of the desired study population and subject matter permit it.

  20. Cost-effectiveness of health research study participant recruitment strategies: a systematic review.

    Science.gov (United States)

    Huynh, Lynn; Johns, Benjamin; Liu, Su-Hsun; Vedula, S Swaroop; Li, Tianjing; Puhan, Milo A

    2014-10-01

    A large fraction of the cost of conducting clinical trials is allocated to recruitment of participants. A synthesis of findings from studies that evaluate the cost and effectiveness of different recruitment strategies will inform investigators in designing cost-efficient clinical trials. To systematically identify, assess, and synthesize evidence from published comparisons of the cost and yield of strategies for recruitment of participants to health research studies. We included randomized studies in which two or more strategies for recruitment of participants had been compared. We focused our economic evaluation on studies that randomized participants to different recruitment strategies. We identified 10 randomized studies that compared recruitment strategies, including monetary incentives (cash or prize), direct contact (letters or telephone call), and medical referral strategies. Only two of the 10 studies compared strategies for recruiting participants to clinical trials. We found that allocating additional resources to recruit participants using monetary incentives or direct contact yielded between 4% and 23% additional participants compared to using neither strategy. For medical referral, recruitment of prostate cancer patients by nurses was cost-saving compared to recruitment by consultant urologists. For all underlying study designs, monetary incentives cost more than direct contact with potential participants, with a median incremental cost per recruitment ratio of Int$72 (Int$-International dollar, a theoretical unit of currency) for monetary incentive strategy compared to Int$28 for direct contact strategy. Only monetary incentives and source of referral were evaluated for recruiting participants into clinical trials. We did not review studies that presented non-monetary cost or lost opportunity cost. We did not adjust for the number of study recruitment sites or the study duration in our economic evaluation analysis. Systematic and explicit reporting of

  1. Using a research reactor to teach practical radiation protection

    International Nuclear Information System (INIS)

    Musilek, A.; Steinhauser, G.

    2010-01-01

    To teach students about the practical handling of radioactive materials and the related radiation protection, it is advantageous to be able to produce radioactive material with specific properties. Through the neutron activation of specific samples, radio-nuclides can be produced that are precisely tailored for particular experiments, both in type of radiation (beta, gamma) as well as in activity and half-life. At the Atominstitut in Vienna, a 250 kW TRIGA Mark II research reactor is used for the production of these nuclides. In this paper, four practical exercises are presented, covering many questions and challenges that occur in radiation protection. The first exercise uses neutron activation of sodium-chloride to cover theoretical aspects of the calculation of dose rates (using dose rate constants) through the activation of Na-23, Cl-35 and Cl-37 (including cross sections, half-life, inverse square law), as well as a practical examination (handling of dose rate meters). The second exercise gives students the opportunity to decontaminate a laboratory after an incident under realistic circumstances. For this exercise, KNO 3 is activated in the reactor. The resulting K-nuclide produces no risk of inadequate decontamination for the laboratory, since the half-life of K-42 is only 12 h. The third exercise is designed to teach students how to deal with unsealed radioactive material by irradiation of ammonium dihydrogenphosphate. In this case, an only-beta-active (P-32) fertilizer is produced, which is applied to plants in subsequent chemical processing. In the following step, the 'quality of this fertilizer' is determined by measuring the absorbed activity of the plant leaves using a GM counter. The fourth exercise is another approach in working with unsealed radioactive material. It simulates the PUREX process to separate uranium from fission products using a liquid - liquid extraction. (authors)

  2. Comparisons of the utility of researcher-defined and participant-defined successful ageing.

    Science.gov (United States)

    Brown, Lynsey J; Bond, Malcolm J

    2016-03-01

    To investigate the impact of different approaches for measuring 'successful ageing', four alternative researcher and participant definitions were compared, including a novel measure informed by cluster analysis. Rates of successful ageing were explored, as were their relative associations with age and measures of successful adaptation, to assess construct validity. Participants, aged over 65, were recruited from community-based organisations. Questionnaires (assessing successful ageing, lifestyle activities and selective optimisation with compensation) were completed by 317 individuals. Successful ageing ranged from 11.4% to 87.4%, with higher rates evident from participant definitions. Though dependent upon the definition, successful agers were typically younger, reported greater engagement with lifestyle activities and more frequent optimisation. While the current study suggested an improved classification algorithm using a common research definition, future research should explore how subjective and objective aspects of successful ageing may be combined to derive a measure relevant to policy and practice. © 2016 AJA Inc.

  3. Legislative Issues in Disclosing Financial Conflicts of Interest to Participants in Biomedical Research: Effectiveness and Methodology.

    Science.gov (United States)

    Kim, Jae Sun

    2017-12-01

    This research focuses on the analysis regarding disclosure of financial conflicts of interest (FCOI) after Gelsinger v. University of Pennsylvania (Penn). The main legal issue was that the participants did not have enough opportunity to make an autonomous decision about participating in the research because he was not informed about the researchers' and the institution's substantial FCOI. The disclosure system was adopted by the Code of Federal Regulations. Under the regulation, researchers and institutions need to report FCOI over $5,000 to the institution, and the internal review boards have to report to the federal authority if needed. In case of human research, the disclosure to Food and Drug Administration is mandatory. FCOI disclosure system would help participants to make an autonomous decision, and increase trust to the research process and researchers. Moreover, the system would let researchers keep fiduciary duty while (possibly) lowering legal liability in case of a lawsuit. There were discussions about the disclosure methodology in the United States. However, there have not been a lot of discussions in Korea even after the "Humidifier Disinfectant" case. Therefore, new legislations need to be considered. First, the system requires disclosure funded by not only government but also private institutions. Second, like California Supreme Court, the subject would be reviewed under the reasonable person standard by participants, including patents, equity, and stock. Third, the disclosure needs to include simple or brief explanation to the FCOI to be better understood by the participants. Fourth, the disclosure should be in the informed consent process. © 2017 The Korean Academy of Medical Sciences.

  4. Planning Today for Tomorrow’s Research: Analysis of Factors Influencing Participation in a Pediatric Cancer Research Biorepository

    Directory of Open Access Journals (Sweden)

    Rania M. Labib

    2018-01-01

    Full Text Available BackgroundBiobanks have become a powerful tool that fosters biomedical research. The success of biobanks depends upon people’s perception and willingness to donate their samples for research. This is the first biorepository in Egypt, hence, little is known about the beliefs and attitudes of parents toward participation.AimTo investigate the level of willingness of Egyptians to donate samples of their children and themselves for research and the different factors influencing participation.Materials and methodsA structured questionnaire was designed covering multiple items expected to affect the enrollment decision. This was conducted in-person, and data collected included demographic data, socioeconomic, and educational level. In addition, in the case of refusal, participants were asked about reasons behind their decision.ResultsOnly about 3.1% of patients have not been enrolled in the project, and 0.3% have withdrawn. Three demographic factors were found having disparate trends in the decision-making process to participate or not: father’s education (p = 0.0001, mother’s education (p = 0.0001, and father’s age (p = 0.034.ConclusionEgyptian parents were willing to donate their samples as well as their children’s samples in our research biorepository. The idea of participation was presented in an interview during which the consent form was explained in a comprehensive transparent way allowing participants the right to refuse or withdraw at any time. Still, different communication approaches are needed with older, more highly educated parents to encourage them to participate.

  5. Chernobyl related research and radiological protection activities in Ireland

    Energy Technology Data Exchange (ETDEWEB)

    Rafferty, B; Cunningham, J D [Radiological Protection Inst. of Ireland (Ireland)

    1996-10-01

    Following the Chernobyl accident a programme of monitoring and research was initiated in the Radiological Protection Institute of Ireland to address questions concerning the immediate and longer term impact of the fallout. Prior to the Chernobyl accident the scientific literature contained limited information on the behaviour of radionuclides in the environment and their entry into food-chains. In response to this lack of information the monitoring programme assessed the contamination status following the accident, while the research programme was aimed at gaining a fuller understanding of the processes of radionuclide transfer. Investigations were undertaken into the pathways through which Chernobyl radionuclides may be transferred to man i.e. via agricultural crops, meat and milk production. The results showed that the behaviour of the fallout radionuclides is complex and highly variable, being influenced by weather, topography, season, crop type, land management etc. The research continues today and its aim is to identify pathways of radiation dose transfer to man and to determine strategies for minimising risk and cost to man and the environment. Examination of the factors which control radionuclide behaviour has revealed practical strategies for dealing with contaminated lands and foods. A significant factor controlling the behaviour of radionuclides in ecosystems is the physico-chemical characteristics of the soil. These physico-chemical characteristics have proved to be useful parameters which can be manipulated to reduce the transfer of radionuclides in agricultural systems. In semi-natural ecosystems (peatlands and commercial forests) the controls on the behaviour of radionuclides are generally more complicated and intervention is more difficult. These ecosystems present a challenge in terms of the identification of possible practical rehabilitation measures. (Abstract Truncated)

  6. Split views among parents regarding children's right to decide about participation in research: a questionnaire survey.

    Science.gov (United States)

    Swartling, U; Helgesson, G; Hansson, M G; Ludvigsson, J

    2009-07-01

    Based on extensive questionnaire data, this paper focuses on parents' views about children's right to decide about participation in research. The data originates from 4000 families participating in a longitudinal prospective screening as 1997. Although current regulations and recommendations underline that children should have influence over their participation, many parents in this study disagree. Most (66%) were positive providing information to the child about relevant aspects of the study. However, responding parents were split about whether or not children should at some point be allowed decisional authority when participating in research: 41.6% of the parents reported being against or unsure. Those who responded positively believed that children should be allowed to decide about blood-sampling procedures (70%), but to a less extent about participation (48.5%), analyses of samples (19.7%) and biological bank storage (15.4%). That as many as possible should remain in the study, and that children do not have the competence to understand the consequences for research was strongly stressed by respondents who do not think children should have a right to decide. When asked what interests they consider most important in paediatric research, child autonomy and decision-making was ranked lowest. We discuss the implications of these findings.

  7. Ethics review of health research on human participants in South Africa.

    Science.gov (United States)

    van Wyk, Christa

    2010-06-01

    In terms of South African legislation, all health research on human participants must be submitted to an accredited research ethics committee for independent ethics review. Health research covers a broad spectrum of research, including clinical trials. This article sets out the ethical-legal framework for the functioning and composition of such committees. It also deals with the newly created National Health Research Ethics Council, which registers and audits health research ethics committees. Special attention is given to the conduct of clinical trials. In conclusion, it is submitted that the National Health Act, the Draft Regulations Relating to Research on Human Subjects, and two sets of ethical guidelines adopted by the Department of Health provide a much needed and coherent ethical-legal framework for research in South Africa.

  8. The regulation of informed consent to participation in clinical research by mentally ill persons: An overview

    Directory of Open Access Journals (Sweden)

    A Nienaber

    2010-12-01

    Full Text Available The article examines the legal requirements relating to the informed consent of mentally ill persons to participation in clinical research in South Africa. First, the juridical basis of informed consent in South African law is outlined; and second, the requirements for lawful consent developed in South African common law and case law are presented. Finally, the article deliberates upon the requirements for the participation of mentally ill persons in research as laid down by the Mental Health Care Act and its regulations, the National Health Act and its (draft regulations, and the South African Constitution.

  9. Participants' perception of pharmaceutical clinical research: a cross-sectional controlled study

    Directory of Open Access Journals (Sweden)

    González-Saldivar G

    2016-04-01

    Full Text Available Gerardo González-Saldivar,1 René Rodríguez-Gutiérrez,2 José Luis Viramontes-Madrid,3 Alejandro Salcido-Montenegro,2 Kevin Erick Gabriel Carlos-Reyna,2 Andrés Marcelo Treviño-Alvarez,2 Neri Alejandro Álvarez-Villalobos,4 José Gerardo González-González2 1Ophthalmology Department, 2Endocrinology Division, Hospital Universitario “Dr. José E. González”, Facultad de Medicina, Universidad Autónoma de Nuevo León, Monterrey, Nuevo León, 3Instituto Nacional de Salud Pública, Cuernavaca, Morelos, 4Medical Statistics Department, Hospital Universitario “Dr. José E. González”, Facultad de Medicina, Universidad Autónoma de Nuevo León, Monterrey, Nuevo León, Mexico Background: There is scarce scientific information assessing participants’ perception of pharmaceutical research in developed and developing countries concerning the risks, safety, and purpose of clinical trials.Methods: To assess the perception that 604 trial participants (cases and 604 nonparticipants (controls of pharmaceutical clinical trials have about pharmaceutical clinical research, we surveyed participants with one of four chronic diseases from 12 research sites throughout Mexico.Results: Participation in clinical trials positively influences the perception of pharmaceutical clinical research. More cases (65.4% than controls (50.7% perceived that the main purpose of pharmaceutical research is to cure more diseases and to do so more effectively. In addition, more cases considered that there are significant benefits when participating in a research study, such as excellent medical care and extra free services, with this being the most important motivation to participate for both groups (cases 52%, controls 54.5%. We also found a sense of trust in their physicians to deal with adverse events, and the perception that clinical research is a benefit to their health, rather than a risk. More controls believed that clinical trial participants’ health is put at risk

  10. Recruiting Adolescent Research Participants: In-Person Compared to Social Media Approaches.

    Science.gov (United States)

    Moreno, Megan A; Waite, Alan; Pumper, Megan; Colburn, Trina; Holm, Matt; Mendoza, Jason

    2017-01-01

    Recruiting adolescent participants for research is challenging. The purpose of this study was to compare traditional in-person recruitment methods to social media recruitment. We recruited adolescents aged 14-18 years for a pilot physical activity intervention study, including a wearable physical activity tracking device and a Facebook group. Participants were recruited (a) in person from a local high school and an adolescent medicine clinic and (b) through social media, including Facebook targeted ads, sponsored tweets on Twitter, and a blog post. Data collected included total exposure (i.e., reach), engagement (i.e., interaction), and effectiveness. Effectiveness included screening and enrollment for each recruitment method, as well as time and resources spent on each recruitment method. In-person recruitment reached a total of 297 potential participants of which 37 enrolled in the study. Social media recruitment reached a total of 34,272 potential participants of which 8 enrolled in the study. Social media recruitment methods utilized an average of 1.6 hours of staff time and cost an average of $40.99 per participant enrolled, while in-person recruitment methods utilized an average of 0.75 hours of staff time and cost an average of $19.09 per participant enrolled. Social media recruitment reached more potential participants, but the cost per participant enrolled was higher compared to traditional methods. Studies need to consider benefits and downsides of traditional and social media recruitment methods based on study goals and population.

  11. Radiation protection research and training programme review radiation protection programme 1960-89 synopsis of results 1985-89

    International Nuclear Information System (INIS)

    1990-01-01

    This document aims to trace the evolution of the CEC radiation protection programme over its 30 years of existence. During this time, research carried out in the framework of the Community programme has made major contributions to the scientific understanding of the action of ionizing radiation and the protection of man and his environment. This information was crucial for developing better radiation protection management for existing and new technologies and for providing the scientific basis for the regulatory activities of the Commission. One important feature of the programme was the success of bringing together scientists from different Member States to cooperate in the various fields of radiation protection and to integrate different areas of radiation protection research into a coherent approach. The structures thus developed within the programme have enabled research in radiation protection to be conducted in a cost-effective manner on behalf of the Member States. This document aims also to give a synopsis of the most important results of the 1985-89 radiation protection programme. This period was characterized by two challenges, the integration of two Member States into Community research and the impact of the Chernobyl accident. The programme has, in spite of reduced funding, continued to provide a high degree of expertise for the Community in the context of the needs in radiation protection. This has been explicity acknowledged in the evaluation of the 1980-89 programmes carried out by an independent panel

  12. Strategies for moving towards equity in recruitment of rural and Aboriginal research participants.

    Science.gov (United States)

    Wong, Sabrina T; Wu, Leena; Boswell, Brooke; Housden, Laura; Lavoie, Josee

    2013-01-01

    Equitable recruitment strategies, designed to ensure improved opportunities to participate in the research, are needed to include First Nations (FN) communities. The purpose of this article is to report on a set of successful strategies trialed with rural and FN communities in Canada. The strategies discussed were designed as part of a larger mixed-method study examining the effectiveness of Group Medical Visits (GMVs) on the quality of primary healthcare (PHC) in both FN reserve and northern communities in British Columbia (BC). Community partners and the study's decision-maker partners helped to identify and recruit primary care practices and reserve communities who were offering GMVs. Eleven communities (6 rural and 5 FN reserve) within the Northern Health Authority, BC participated in the study. Participants completed a survey either in person or via telephone. Content analysis was conducted on team meeting and field notes, focusing on issues related to the data collection process. Financial analysis was conducted on monetary resources spent on recruitment efforts in the various communities. Data were recorded regarding the number of times potential participants were contacted and mode of interview. Descriptive statistics were used to examine whether there were differences by mode of data collection, gender, and FN status. Logistic regression was used to examine whether FN status remained statistically significant after controlling for sex, education, employment status, age and health status. Once people were contacted, participation rate was 68% with 269 (n=90 men, n=179 women) people. Of those who participated in the survey, 42% were from FN communities. Content analysis revealed two overarching categories: (1) communication and coordination of the geographically dispersed research team and participating communities was maintained using synchronous and asynchronous methods; and (2) flexibility was needed to tailor recruitment strategies. Financial resources

  13. Culturally Relevant Human Subjects Protection Training: A Case Study in Community-Engaged Research in the United States.

    Science.gov (United States)

    Kue, Jennifer; Szalacha, Laura A; Happ, Mary Beth; Crisp, Abigail L; Menon, Usha

    2018-02-01

    Non-academic members of research teams, such as community members, can perceive traditional human subjects protection training as lacking in cultural relevance. We present a case exemplar of the development of a human subjects protection training for research staff with limited English proficiency and/or no or limited research experience. Seven modules were adapted for language, cultural examples, etc., from the standard Collaborative Institutional Training Initiative (CITI) human subjects protection training. Non-academic research staff completed a day-long training in human subjects protection (six modules) and our research protocol (one module). We assessed comprehension of content with PowerPoint slides and module quizzes. All participants successfully passed each module quiz with ≥ 80% correct. Questions answered incorrectly were discussed before proceeding to the next module. To meet the increasing demand for collaborative community-engaged research with underserved minority populations, human subjects protection training protocols can be adapted successfully to reflect real-world situations and provide culturally relevant materials to help non-academic research staff better understand the importance and necessity of research ethics.

  14. Research priorities in health communication and participation: international survey of consumers and other stakeholders

    Science.gov (United States)

    Bragge, Peter; Lowe, Dianne; Nunn, Jack S; O’Sullivan, Molly; Horvat, Lidia; Tong, Allison; Kay, Debra; Ghersi, Davina; McDonald, Steve; Poole, Naomi; Bourke, Noni; Lannin, Natasha; Vadasz, Danny; Oliver, Sandy; Carey, Karen; Hill, Sophie J

    2018-01-01

    Objective To identify research priorities of consumers and other stakeholders to inform Cochrane Reviews in ‘health communication and participation’ (including such concepts as patient experience, shared decision-making and health literacy). Setting International. Participants We included anyone with an interest in health communication and participation. Up to 151 participants (18–80 years; 117 female) across 12 countries took part, including 48 consumers (patients, carers, consumer representatives) and 75 professionals (health professionals, policymakers, researchers) (plus 25 people who identified as both). Design Survey. Methods We invited people to submit their research ideas via an online survey open for 4 weeks. Using inductive thematic analysis, we generated priority research topics, then classified these into broader themes. Results Participants submitted 200 research ideas, which we grouped into 21 priority topics. Key research priorities included: insufficient consumer involvement in research (19 responses), ‘official’ health information is contradictory and hard to understand (18 responses), communication/coordination breakdowns in health services (15 responses), health information provision a low priority for health professionals (15 responses), insufficient eliciting of patient preferences (14 responses), health services poorly understand/implement patient-centred care (14 responses), lack of holistic care impacting healthcare quality and safety (13 responses) and inadequate consumer involvement in service design (11 responses). These priorities encompassed acute and community health settings, with implications for policy and research. Priority populations of interest included people from diverse cultural and linguistic backgrounds, carers, and people with low educational attainment, or mental illness. Most frequently suggested interventions focused on training and cultural change activities for health services and health professionals

  15. The limitations of language: male participants, stoicism, and the qualitative research interview.

    Science.gov (United States)

    Affleck, William; Glass, Kc; Macdonald, Mary Ellen

    2013-03-01

    The semistructured, open-ended interview has become the gold standard for qualitative health research. Despite its strengths, the long interview is not well suited for studying topics that participants find difficult to discuss, or for working with those who have limited verbal communication skills. A lack of emotional expression among male research participants has repeatedly been described as a significant and pervasive challenge by health researchers in a variety of different fields. This article explores several prominent theories for men's emotional inexpression and relates them to qualitative health research. The authors argue that investigators studying emotionally sensitive topics with men should look beyond the long interview to methods that incorporate other modes of emotional expression. This article concludes with a discussion of several such photo-based methods, namely, Photovoice, Photo Elicitation, and Visual Storytelling.

  16. The CAMPARE Program:A New Model Promoting Minority Participation in Astronomy Research and Education

    Science.gov (United States)

    Rudolph, Alexander L.; Impey, C. D.; Bieging, J. H.; Phillips, C. B.; Tieu, J.; Povich, M. S.

    2014-01-01

    The California-Arizona Minority Partnership for Astronomy Research and Education (CAMPARE) program represents a new and innovative kind of research program for undergraduates: one that can effectively carry out the goal of recruiting qualified minority and female students to participate in Astronomy and Planetary Science research opportunities, while mentoring them in a way to maximize the chance that these students will persist in obtaining their undergraduate degrees in STEM fields, and potentially go on to obtain their PhDs or pursue careers in those fields. The members of CAMPARE comprise a network of comprehensive universities and community colleges in Southern California and Arizona (most of which are minority serving institutions), and four major research institutions (University of Arizona Steward Observatory, the SETI Institute, and JPL/Caltech). Most undergraduate research programs focus on a single research institution. By having multiple institutions, we significantly broaden the opportunities for students, both in terms of breadth of research topics and geographical location.

  17. Initial experience with a group presentation of study results to research participants

    Directory of Open Access Journals (Sweden)

    Bent Stephen

    2008-03-01

    Full Text Available Abstract Background Despite ethical imperatives, informing research participants about the results of the studies in which they take part is not often performed. This is due, in part, to the costs and burdens of communicating with each participant after publication of the results. Methods Following the closeout and publication of a randomized clinical trial of saw palmetto for treatment of symptoms of benign prostatic hyperplasia, patients were invited back to the research center to participate in a group presentation of the study results. Results Approximately 10% of participants attended one of two presentation sessions. Reaction to the experience of the group presentation was very positive among the attendees. Conclusion A group presentation to research participants is an efficient method of communicating study results to those who desire to be informed and was highly valued by those who attended. Prospectively planning for such presentations and greater scheduling flexibility may result in higher attendance rates. Trial Registration Number Clinicaltrials.gov #NCT00037154

  18. Adapting an evidence-based model to retain adolescent study participants in longitudinal research.

    Science.gov (United States)

    Davis, Erin; Demby, Hilary; Jenner, Lynne Woodward; Gregory, Alethia; Broussard, Marsha

    2016-02-01

    Maintaining contact with and collecting outcome data from adolescent study participants can present a significant challenge for researchers conducting longitudinal studies. Establishing an organized and effective protocol for participant follow-up is crucial to reduce attrition and maintain high retention rates. This paper describes our methods in using and adapting the evidence-based Engagement, Verification, Maintenance, and Confirmation (EVMC) model to follow up with adolescents 6 and 12 months after implementation of a health program. It extends previous research by focusing on two key modifications to the model: (1) the central role of cell phones and texting to maintain contact with study participants throughout the EVMC process and, (2) use of responsive two-way communication between staff and participants and flexible administration modes and methods in the confirmation phase to ensure that busy teens not only respond to contacts, but also complete data collection. These strategies have resulted in high overall retention rates (87-91%) with adolescent study participants at each follow-up data collection point without the utilization of other, more involved tracking measures. The methods and findings presented may be valuable for other researchers with limited resources planning for or engaged in collecting follow-up outcome data from adolescents enrolled in longitudinal studies. Copyright © 2015. Published by Elsevier Ltd.

  19. Risk and protective factors, longitudinal research, and bullying prevention.

    Science.gov (United States)

    Ttofi, Maria M; Farrington, David P

    2012-01-01

    This chapter presents the results from two systematic/meta-analytic reviews of longitudinal studies on the association of school bullying (perpetration and victimization) with adverse health and criminal outcomes later in life. Significant associations between the two predictors and the outcomes are found even after controlling for other major childhood risk factors that are measured before school bullying. The results indicate that effective antibullying programs should be encouraged. They could be viewed as a form of early crime prevention as well as an early form of public health promotion. The findings from a systematic/meta-analytic review on the effectiveness of antibullying programs are also presented. Overall, school-based antibullying programs are effective, leading to an average decrease in bullying of 20 to 23 percent and in victimization of 17 to 20 percent. The chapter emphasizes the lack of prospective longitudinal research in the area of school bullying, which does not allow examination of whether any given factor (individual, family,. or social) is a correlate, a predictor, or a possible cause for bullying. This has important implications for future antibullying initiatives, as well as implications for the refinement of theories of school bullying. It is necessary to extend the framework of the traditional risk-focused approach by incorporating the notion of resiliency and investigating possible protective factors against school bullying and its negative consequences. Copyright © 2012 Wiley Periodicals, Inc., A Wiley Company.

  20. The Vulnerability of Study Participants in the Context of Transnational Biomedical Research: From Conceptual Considerations to Practical Implications.

    Science.gov (United States)

    Orth, Helen Grete; Schicktanz, Silke

    2017-08-01

    Outsourcing clinical trials sponsored by pharmaceutical companies from industrialized countries to low- (middle)-income countries - summarized as transnational biomedical research (TBR) - has lead to many concerns about ethical standards. Whether study participants are particularly vulnerable is one of those concerns. However, the concept of vulnerability is still vague and varies in its definition. Despite the fact that important international ethical guidelines such as the Declaration of Helsinki by the World Medical Association or the Ethical Guidelines for Biomedical Research Involving Human Subjects by the Council of International Organizations of Medical Sciences refer to vulnerability as ethical principle, each of their approaches are different. To overcome these shortcomings, we analyze and unite different approaches of vulnerability and develop practical criteria in order to operationalize the concept especially for the context of TBR. These criteria refer to the context of a study as well as the characteristics and the current living situation of study participants. Based on a case study of an HIV-vaccine-trial conducted in India we demonstrate how those criteria can be applied in a retrospective way to identify potential ethical conflicts. The criteria can also indicate a prospective function for ethical pre-assessment. For this, we provide an outlook for three major topics: 1. Vulnerability as a normative concept: Different ways of protection; 2. The relevance of transparency and 3. Vulnerability as an instrument to increase decision participation of human subjects. © 2016 John Wiley & Sons Ltd.

  1. Mars Public Mapping Project: Public Participation in Science Research; Providing Opportunities for Kids of All Ages

    Science.gov (United States)

    Rogers, L. D.; Valderrama Graff, P.; Bandfield, J. L.; Christensen, P. R.; Klug, S. L.; Deva, B.; Capages, C.

    2007-12-01

    The Mars Public Mapping Project is a web-based education and public outreach tool developed by the Mars Space Flight Facility at Arizona State University. This tool allows the general public to identify and map geologic features on Mars, utilizing Thermal Emission Imaging System (THEMIS) visible images, allowing public participation in authentic scientific research. In addition, participants are able to rate each image (based on a 1 to 5 star scale) to help build a catalog of some of the more appealing and interesting martian surface features. Once participants have identified observable features in an image, they are able to view a map of the global distribution of the many geologic features they just identified. This automatic feedback, through a global distribution map, allows participants to see how their answers compare to the answers of other participants. Participants check boxes "yes, no, or not sure" for each feature that is listed on the Mars Public Mapping Project web page, including surface geologic features such as gullies, sand dunes, dust devil tracks, wind streaks, lava flows, several types of craters, and layers. Each type of feature has a quick and easily accessible description and example image. When a participant moves their mouse over each example thumbnail image, a window pops up with a picture and a description of the feature. This provides a form of "on the job training" for the participants that can vary with their background level. For users who are more comfortable with Mars geology, there is also an advanced feature identification section accessible by a drop down menu. This includes additional features that may be identified, such as streamlined islands, valley networks, chaotic terrain, yardangs, and dark slope streaks. The Mars Public Mapping Project achieves several goals: 1) It engages the public in a manner that encourages active participation in scientific research and learning about geologic features and processes. 2) It helps to

  2. Motivational assessment of non-treatment buprenorphine research participation in heroin dependent individuals.

    Science.gov (United States)

    Papke, Gina; Greenwald, Mark K

    2012-06-01

    Heroin abuse remains an important public health problem, particularly in economically disadvantaged areas. Insight into this problem is gained from interviewing addicted individuals. However, we lack systematic data on factors that motivate heroin users to participate in non-treatment research that offers both financial incentives (compensation) and non-financial incentives (e.g., short-term medication). To better understand the relative importance of several types of personal motivations to participate in non-treatment buprenorphine research, and to relate self-motivations to social, economic, demographic and drug use factors. Heroin dependent volunteers (N=235 total; 57 female and 178 male; 136 African American, 86 Caucasian, and 13 Other) applied for non-therapeutic buprenorphine research in an urban outpatient setting from 2004 to 2008. We conducted a semi-structured behavioral economic interview, after which participants ranked 11 possible motivations for research participation. Although the study was repeatedly described as non-treatment research involving buprenorphine, participants often ranked some treatment-related motivations as important (wanting to reduce/stop heroin use, needing a medication to get stabilized/detoxify). Some motivations correlated with income, heroin use, and years since marketing of buprenorphine. Two dimensions emerged from principal component analysis of motivation rankings: (1) treatment motivation vs. greater immediate needs and (2) commitment to trying alternatives vs. a more accepting attitude toward traditional interventions. In summary, heroin addicts' self-motivations to engage in non-therapeutic research are complex--they value economic gain but not exclusively or primarily--and relate to variables such as socioeconomic factors and drug use. Copyright © 2011 Elsevier Ireland Ltd. All rights reserved.

  3. Participative mental health consumer research for improving physical health care: An integrative review.

    Science.gov (United States)

    Happell, Brenda; Ewart, Stephanie B; Platania-Phung, Chris; Stanton, Robert

    2016-10-01

    People with mental illness have a significantly lower life expectancy and higher rates of chronic physical illnesses than the general population. Health care system reform to improve access and quality is greatly needed to address this inequity. The inclusion of consumers of mental health services as co-investigators in research is likely to enhance service reform. In light of this, the current paper reviews mental health consumer focussed research conducted to date, addressing the neglect of physical health in mental health care and initiatives with the aim of improving physical health care. The international literature on physical healthcare in the context of mental health services was searched for articles, including mental health consumers in research roles, via Medline, CINAHL and Google Scholar, in October 2015. Four studies where mental health consumers participated as researchers were identified. Three studies involved qualitative research on barriers and facilitators to physical health care access, and a fourth study on developing technologies for more effective communication between GPs and patients. This review found that participatory mental health consumer research in physical health care reform has only become visible in the academic literature in 2015. Heightened consideration of mental health consumer participation in research is required by health care providers and researchers. Mental health nurses can provide leadership in increasing mental health consumer research on integrated care directed towards reducing the health gap between people with and without mental illness. © 2016 Australian College of Mental Health Nurses Inc.

  4. Research for Foreign Advanced Ports for Protection and Development Experience

    Science.gov (United States)

    Zhang, Lu; Tian, Mingjing; Zhao, Junjie; Shou, Youping; Wang, Ning; Qiao, Jianzhe; Li, Guanglou

    2018-04-01

    Into the twenty-first century, the process globalization of economic and trade is getting faster and faster, As of 2014, China's annual port trading amount topped the world, But in the port of environmental protection sustainable development approach with foreign advanced port environmental management concept has a big gap. Combined with the present situation of modern ports in China. Drawing lessons from foreign advanced environmental protection idea of port, in order to promote the protection of port environment in our country. The experience of protection and development of foreign advanced port environment will be discussed and discussed.

  5. Comparative Research of Residents’ Effect Perception and Participation Capacity and Willingness on Pro-poor Tourism

    Institute of Scientific and Technical Information of China (English)

    Guoqing; HUANG; Hong; SHU

    2014-01-01

    In this article,comparative research on residents’ effect perception,participation capacity and willingness on Pro-poor Tourism( PPT) is given based on the questionnaire carried out in Wulong County and Fengjie County in Three Gorges Area,Chongqing,China. Some technologies,such as SPSS 13. 0,ANOVA and T-test are applied to analyze the data and results show Wulong residents’ perception behavior is better than that of Fengjie residents. Moreover,the residents with different demographic characteristics have different participation behavior.Finally,multiple regression analysis is applied to identify the key factors influencing residents’ perception behavior,that is participation willingness and positive economic effect perception,positive social and cultural effect perception and participation capacity.

  6. A Review of Barriers to Minorities' Participation in Cancer Clinical Trials: Implications for Future Cancer Research.

    Science.gov (United States)

    Salman, Ali; Nguyen, Claire; Lee, Yi-Hui; Cooksey-James, Tawna

    2016-04-01

    To enhance nurses' awareness and competencies in practice and research by reporting the common barriers to participation of minorities in cancer clinical trials and discussing facilitators and useful strategies for recruitment. Several databases were searched for articles published in peer reviewed journals. Some of the barriers to minorities' participation in clinical trials were identified within the cultural social-context of cancer patients. The involvement of community networking was suggested as the most effective strategy for the recruitment of minorities in cancer clinical trials. Using culturally sensitive approaches to enhance ethnic minorities' participation is important for advancing cancer care and eliminating health disparities. Awareness of barriers and potential facilitators to the enrollment of ethnic minority cancer patients may contribute to enhancing nurses' competencies of recruiting ethnic minorities in nursing research, playing efficient roles in cancer clinical trials team, and providing culturally competent quality care.

  7. A Trend Analysis of Participant and Setting Characteristics in Autism Intervention Research

    Science.gov (United States)

    Crosland, Kimberly A.; Clarke, Shelley; Dunlap, Glen

    2013-01-01

    The current trend analysis was conducted to empirically document the characteristics of individuals with autism who participated in intervention research published between 1995 and 2009 in three journals ("Journal of Applied Behavior Analysis," "Journal of Autism and Developmental Disorders," and "Focus on Autism and Other…

  8. Pediatric oncologists' attitudes towards involving adolescents in decision-making concerning research participation.

    NARCIS (Netherlands)

    Vries, M.C. de; Wit, J.M.; Engberts, D.P.; Kaspers, G.J.L.; Leeuwen, E. van

    2010-01-01

    BACKGROUND: Various regulations and guidelines stipulate the importance of involving adolescents in decision-making concerning research participation. Several studies have shown that in the context of pediatric oncology this involvement is difficult to achieve due to emotional stress, the complexity

  9. Disclosure of individual genetic data to research participants: the debate reconsidered

    NARCIS (Netherlands)

    Bredenoord, A.L.; Kroes, H.Y.; Cuppen, E.; Parker, M.; van Delden, J.J.M.

    2010-01-01

    Despite extensive debate, there is no consensus on whether individual genetic data should be disclosed to research participants. The emergence of whole-genome sequencing methods is increasingly generating unequalled amounts of genetic data, making the need for a clear feedback policy even more

  10. Motives for participating in a clinical research trial: a pilot study in Brazil

    Directory of Open Access Journals (Sweden)

    Nappo Solange A

    2013-01-01

    Full Text Available Abstract Background In the past, clinical study participants have suffered from the experiments that they were subjected to. Study subjects may not understand the study process or may participate in clinical studies because they do not have access to medical care. The objectives of the present study were 1. to analyze the motives that might cause a volunteer to participate as a study subject; 2. to identify the social-demographic profile of this study subjects; and 3. to determine whether the motives to volunteer as a study subject are in accordance with the established legal and ethical principles for research in Brazil. Methods Mixed-methods research was used (a qualitative-quantitative approach. A sample of 80 volunteers underwent a semi-structured interview, which was based on a survey script that was elaborated from discussions with key informants. The sample was randomly selected from a database of clinical study volunteers that was provided by Brazilian clinical study centers. The interviews were recorded and transcribed. Descriptive statistics were used for content analysis, including contingency tables with hypothesis testing. Results The motivations for clinical study participation were linked to types of benefit. The most frequently encountered motivations were financial gain and therapeutic alternative. Altruism was not a common motivator, and when altruism was present, it was observed as a secondary motivator. All participants reported that they understood the Informed Consent Statement (ICS. However, only two parts of the form were remembered by all of the volunteers: the section on being able to leave the study at any point and the section that stated that there would be some responsible professional at their disposal for the entirety of the study. Conclusions The present study shows that study participants are primarily motivated by personal benefit when volunteering to participate in clinical studies. Whether these study

  11. Motives for participating in a clinical research trial: a pilot study in Brazil.

    Science.gov (United States)

    Nappo, Solange A; Iafrate, Giovanna B; Sanchez, Zila M

    2013-01-10

    In the past, clinical study participants have suffered from the experiments that they were subjected to. Study subjects may not understand the study process or may participate in clinical studies because they do not have access to medical care. The objectives of the present study were 1. to analyze the motives that might cause a volunteer to participate as a study subject; 2. to identify the social-demographic profile of this study subjects; and 3. to determine whether the motives to volunteer as a study subject are in accordance with the established legal and ethical principles for research in Brazil. Mixed-methods research was used (a qualitative-quantitative approach). A sample of 80 volunteers underwent a semi-structured interview, which was based on a survey script that was elaborated from discussions with key informants. The sample was randomly selected from a database of clinical study volunteers that was provided by Brazilian clinical study centers. The interviews were recorded and transcribed. Descriptive statistics were used for content analysis, including contingency tables with hypothesis testing. The motivations for clinical study participation were linked to types of benefit. The most frequently encountered motivations were financial gain and therapeutic alternative. Altruism was not a common motivator, and when altruism was present, it was observed as a secondary motivator. All participants reported that they understood the Informed Consent Statement (ICS). However, only two parts of the form were remembered by all of the volunteers: the section on being able to leave the study at any point and the section that stated that there would be some responsible professional at their disposal for the entirety of the study. The present study shows that study participants are primarily motivated by personal benefit when volunteering to participate in clinical studies. Whether these study participants had an integral understanding of the ICS is not clear.

  12. Reporting of ethical protection in recent oral and maxillofacial surgery research involving human subjects.

    Science.gov (United States)

    Pitak-Arnnop, P; Sader, R; Hervé, C; Dhanuthai, K; Bertrand, J-Ch; Hemprich, A

    2009-07-01

    This retrospective observational study investigated the frequency of reporting ethical approval and informed consent in recently published oral and maxillofacial surgery (OMS) research involving human subjects. All research involving human subjects published in the International Journal of Oral and Maxillofacial Surgery, Journal of Oral and Maxillofacial Surgery, British Journal of Oral and Maxillofacial Surgery, and Journal of Cranio-Maxillofacial Surgery during January to June 2005-2007 were analysed for disclosure of ethical approval by a local ethical committee and obtaining informed consent from the subjects. 534 articles were identified; ethical approval was documented in 118 (22%) and individual patient consent in 135 (25%). 355 reports (67%) did not include a statement on ethical approval or informed consent and only 74 reports (14%) disclosed statements of both. Ethical documentation in retrospective and observational studies was scant; 12% of randomised controlled trials and 38% of non-random trials did not report both of ethical protections. Most recent OMS publications involving humans failed to mention ethical review or subjects' consent. Authors must adhere to the international research ethics guidelines and journal instructions, while editors should play a gatekeeper role to protect research participants, uphold scientific integrity and maintain public trust in the experimental process and OMS profession.

  13. 75 FR 62738 - Revisions to EPA's Rule on Protections for Subjects in Human Research Involving Pesticides...

    Science.gov (United States)

    2010-10-13

    ... addressed in EPA science and ethics reviews of proposed and completed human research for pesticides, based... Revisions to EPA's Rule on Protections for Subjects in Human Research Involving Pesticides; Notification to... protection of human subjects of research that apply to third parties who conduct or support research for...

  14. Researcher readiness for participating in community-engaged dissemination and implementation research: a conceptual framework of core competencies.

    Science.gov (United States)

    Shea, Christopher M; Young, Tiffany L; Powell, Byron J; Rohweder, Catherine; Enga, Zoe K; Scott, Jennifer E; Carter-Edwards, Lori; Corbie-Smith, Giselle

    2017-09-01

    Participating in community-engaged dissemination and implementation (CEDI) research is challenging for a variety of reasons. Currently, there is not specific guidance or a tool available for researchers to assess their readiness to conduct CEDI research. We propose a conceptual framework that identifies detailed competencies for researchers participating in CEDI and maps these competencies to domains. The framework is a necessary step toward developing a CEDI research readiness survey that measures a researcher's attitudes, willingness, and self-reported ability for acquiring the knowledge and performing the behaviors necessary for effective community engagement. The conceptual framework for CEDI competencies was developed by a team of eight faculty and staff affiliated with a university's Clinical and Translational Science Award (CTSA). The authors developed CEDI competencies by identifying the attitudes, knowledge, and behaviors necessary for carrying out commonly accepted CE principles. After collectively developing an initial list of competencies, team members individually mapped each competency to a single domain that provided the best fit. Following the individual mapping, the group held two sessions in which the sorting preferences were shared and discrepancies were discussed until consensus was reached. During this discussion, modifications to wording of competencies and domains were made as needed. The team then engaged five community stakeholders to review and modify the competencies and domains. The CEDI framework consists of 40 competencies organized into nine domains: perceived value of CE in D&I research, introspection and openness, knowledge of community characteristics, appreciation for stakeholder's experience with and attitudes toward research, preparing the partnership for collaborative decision-making, collaborative planning for the research design and goals, communication effectiveness, equitable distribution of resources and credit, and

  15. Domestic violence among adolescents in HIV prevention research in Tanzania: Participant experiences and measurement issues

    Science.gov (United States)

    Baumgartner, Joy Noel; Kaaya, Sylvia; Karungula, Happy; Kaale, Anna; Headley, Jennifer; Tolley, Elizabeth

    2014-01-01

    Objectives Under-representation of female adolescents in HIV clinical trials may inhibit their access to future prevention technologies. Domestic violence, broadly defined as violence perpetrated by intimate partners and/or family members, may affect trial participation. This study describes violence in the lives of adolescents and young women in Tanzania, explores use of the Women’s Experience with Battering (WEB) Scale to measure battering, and examines the associations between battering and socio-demographic and HIV risk factors. Methods Community formative research (CFR) and a mock clinical trial (MCT) were conducted to examine the challenges of recruiting younger (15-17) versus older (18-21) participants into HIV prevention trials. The CFR included qualitative interviews with 23 participants and there were 135 MCT participants. The WEB was administered in both the CFR and MCT. Results Nineteen CFR participants experienced physical/sexual violence and 17% scored positive for battering. All married participants reported partner-related domestic violence, and half scored positive for battering. Many believed beatings were normal. None of the single participants scored positive on battering, but one-third reported abuse by relatives. Among MCT participants, 15% scored positive for battering; most perpetrators were relatives. Younger participants were more likely to report battering. Conclusions Adolescents experienced high rates of domestic violence and the WEB captured battering from both partners and relatives. The level of familial violence was unexpected and has implications for parental roles in study recruitment. Addressing adolescent abuse in HIV prevention trials and in the general population should be a public health priority. PMID:24740725

  16. Participation in college laboratory research apprenticeships among students considering careers in medicine

    Directory of Open Access Journals (Sweden)

    Dorothy A. Andriole

    2015-06-01

    Full Text Available Objective: We sought to determine the prevalence of college laboratory research apprenticeship (CLRA participation among students considering medical careers and to examine the relationship between CLRA participation and medical-school acceptance among students who applied to medical school. Methods: We used multivariate logistic regression to identify predictors of: 1 CLRA participation in a national cohort of 2001–2006 Pre-Medical College Admission Test (MCAT Questionnaire (PMQ respondents and 2 among those PMQ respondents who subsequently applied to medical school, medical-school acceptance by June 2013, reporting adjusted odds ratios (aOR and 95% confidence intervals (95% CI. Results: Of 213,497 PMQ respondents in the study sample (81.2% of all 262,813 PMQ respondents in 2001–2006, 72,797 (34.1% reported CLRA participation. Each of under-represented minorities in medicine (URM race/ethnicity (vs. white, aOR: 1.04; 95% CI: 1.01–1.06, Asian/Pacific Islander race/ethnicity (vs. white, aOR: 1.20; 95% CI: 1.17–1.22, and high school summer laboratory research apprenticeship (HSLRA participation (aOR: 3.95; 95% CI: 3.84–4.07 predicted a greater likelihood of CLRA participation. Of the 213,497 PMQ respondents in the study sample, 144,473 (67.7% had applied to medical school and 87,368 (60.5% of 144,473 medical-school applicants had been accepted to medical school. Each of female gender (vs. male, aOR: 1.19; 95% CI: 1.16–1.22, URM race/ethnicity (vs. white, aOR: 3.91; 95% CI: 3.75–4.08, HSLRA participation (aOR: 1.11; 95% CI: 1.03–1.19, CLRA participation (aOR: 1.12; 95% CI: 1.09–1.15, college summer academic enrichment program participation (aOR: 1.26; 95% CI: 1.21–1.31, and higher MCAT score (per point increase, aOR: 1.31; 95% CI: 1.30–1.31 predicted a greater likelihood of medical-school acceptance. Conclusions: About one-third of all PMQ respondents had participated in CLRAs prior to taking the MCAT, and such participation

  17. Public Engagement Through Shared Immersion: Participating in the Processes of Research.

    Science.gov (United States)

    Tang, Jessica Janice; Maroothynaden, Jason; Bello, Fernando; Kneebone, Roger

    2013-10-01

    Recently, the literature has emphasized the aims and logistics of public engagement, rather than its epistemic and cultural processes. In this conceptual article, we use our work on surgical simulation to describe a process that has moved from the classroom and the research laboratory into the public sphere. We propose an innovative shared immersion model for framing the relationship between engagement activities and research. Our model thus frames the public engagement experience as a participative encounter, which brings visitor and researcher together in a shared (surgical) experience mediated by experts from a range of domains.

  18. Online Social Networking, Sexual Risk and Protective Behaviors: Considerations for Clinicians and Researchers.

    Science.gov (United States)

    Holloway, Ian W; Dunlap, Shannon; Del Pino, Homero E; Hermanstyne, Keith; Pulsipher, Craig; Landovitz, Raphael J

    2014-09-01

    Online social networking refers to the use of internet-based technologies that facilitate connection and communication between users. These platforms may be accessed via computer or mobile device (e.g., tablet, smartphone); communication between users may include linking of profiles, posting of text, photo and video content, instant messaging and email. This review provides an overview of recent research on the relationship between online social networking and sexual risk and protective behaviors with a focus on use of social networking sites (SNS) among young people and populations at high risk for sexually transmitted infections (STIs). While findings are mixed, the widespread use of SNS for sexual communication and partner seeking presents opportunities for the delivery and evaluation of public health interventions. Results of SNS-based interventions to reduce sexual risk are synthesized in order to offer hands-on advice for clinicians and researchers interested in engaging patients and study participants via online social networking.

  19. The potential therapeutic value for bereaved relatives participating in research: An exploratory study.

    Science.gov (United States)

    Germain, Alison; Mayland, Catriona R; Jack, Barbara A

    2016-10-01

    Conducting research with the bereaved presents an immediate ethical challenge, as they are undoubtedly a vulnerable group, associated with high levels of distress and susceptible to both physical and mental health issues. A comprehensive understanding of the potential therapeutic benefits for bereaved relatives participating in palliative care research is limited, and therefore the ethics of engaging this group remain questionable. This paper describes a secondary analysis of qualitative data collected in the Care of the Dying Evaluation (CODE) project, examining the experiences of patients who died at home. It explores the motivations and potential benefits for bereaved relatives participating in research with reference to the recently developed concepts in bereavement theory. Cognitive interviews were conducted with 15 bereaved relatives and secondary analysis using a content analysis framework was employed to classify the data. The results center around six recurring concepts identified as adaptive in current bereavement theory: an opportunity to share the narrative accounts of the final hours of their relative's life; a search for sense and meaning in loss; an ongoing bond/attachment with the deceased; altruistic motivations; oscillation between loss and restorative orientations; and a sense of resilience. Overall, the participants found that taking part in the research was valuable and that it could be described as offering therapeutic benefits. The need for bereaved relatives to take part in research studies should be encouraged, as they provide an accurate proxy for the patient's experience of end-of-life care while also providing a valuable account of their own perspective as family member and carer. In addition, we highlight the need for ethics committees to be aware of the potential benefits for bereaved relatives participating in research of this kind.

  20. Advances on radiation protection dosimetry research, development and services at AEOI

    International Nuclear Information System (INIS)

    Sohrabi, M.

    1993-01-01

    Radiation dosimetry is the main counterpart of an effective national radiation protection program to protect radiation workers, public and the environment against harmful effects of radiation. Research and development on radiation dosimetry are of vital needs to support national dosimetry services. The National Radiation Protection Department (NRPD) of the Atomic Energy Organization of Iran (AEOI) being a National Authority on radiation protection is also responsible for radiation dosimetry research, development and services. Some highlights of such activities at NRPD are reviewed and discussed

  1. Implementation of Motivational Interviewing in Substance Use Disorder Treatment: Research Network Participation and Organizational Compatibility.

    Science.gov (United States)

    Rieckmann, Traci R; Abraham, Amanda J; Bride, Brian E

    Despite considerable empirical evidence that psychosocial interventions improve addiction treatment outcomes across populations, implementation remains problematic. A small body of research points to the importance of research network participation as a facilitator of implementation; however, studies examined limited numbers of evidence-based practices. To address this gap, the present study examined factors impacting implementation of motivational interviewing (MI). This study used data from a national sample of privately funded treatment programs (n = 345) and programs participating in the National Drug Abuse Treatment Clinical Trials Network (CTN) (n = 156). Data were collected via face-to-face interviews with program administrators and clinical directors (2007-2009). Analysis included bivariate t tests and chi-square tests to compare private and CTN programs, and multivariable logistic regression of MI implementation. A majority (68.0%) of treatment programs reported use of MI. Treatment programs participating in the CTN (88.9%) were significantly more likely to report use of MI compared with non-CTN programs (58.5%; P Motivational Interviewing Network of Trainers as compared with private programs (56.1%; P tool were more likely to use MI, whereas programs placing greater emphasis on confrontational group therapy were less likely to use MI. Findings suggest the critical role of research network participation, access to psychiatrists, and organizational compatibility in adoption and sustained use of MI.

  2. Protecting the 'Na Plachtě' natural monument from development. A case study on the importance of public participation in environmental protection

    Directory of Open Access Journals (Sweden)

    Vendula Záhumenská

    2014-11-01

    Full Text Available Na Plachtě is located at the south-eastern edge of Hradec Králové where over the past 20 years conflicts of interests between environmentalists and local developers have arisen concerning the development and commercial use of the site. This case study is concerned with the importance of public participation in  environmental issues and describes the specific opportunities for influencing environmental decision-making. The author refers to specific events which eventually resulted in the declaration of the Na Plachtě site as a “natural monument”; she also investigates opportunities for changing the landscape plan which would strengthen  protection against any construction on the site. Other possibilities for influencing decision-making about issues of concern to the general public and which have an impact on the work of regional representatives are also discussed.

  3. Academic research as human activity: Occupational Therapy contributions for consumer participation

    Directory of Open Access Journals (Sweden)

    Tatiana Dimov

    2016-07-01

    Full Text Available The involvement of consumers in research is a recent trend in the world. Involving consumers in researches on health services, therapeutic approaches, effectiveness of support groups, mutual help groups, and even on medication is crucial for obtaining academic results that are representative of the group of consumers, and influence public policies that are effective and functional for consumers. This paper presents an analysis of how consumers can get involved in a research and what can be the role of an occupational therapist in such activity. When governed by the principles of autonomy, empowerment, and recovery, researches with consumer participation promote the principles of equality and recognition, allowing inclusion in the research process, and promoting the recognition of consumer knowledge. As an activity, research can be a motivator, mobilizing wills and desires. It can also be a possibility of leaving stagnation and making decisions. The occupational therapist can help this process. Occupational therapy focus on activities that are significant to the life of individuals. Participation in research becomes a focus for the therapeutic process to the extent that it presents itself as a demand for the client.

  4. Research participants' skills development as HIV prevention peer educators in their communities.

    Science.gov (United States)

    Morar, Neetha Shagan; Naidoo, Sarita; Goolam, Ahmed; Ramjee, Gita

    2016-06-01

    This article describes the influence of a peer education programme on skills development among 22 women participating in HIV prevention trials. Interviews were used to collect data on peer educator experiences and their opinions of the trainings. The training enhanced their agency and confidence to engage their family and community on health promotion, including HIV prevention research procedures, thus improving their self-esteem and communication skills. Training and partnering with clinical trial participants as peer educators is an effective and sustainable community-based approach for HIV prevention.

  5. Research study on public relations and public participation in the nuclear energy field

    International Nuclear Information System (INIS)

    Gunji, Ikuko; Tabata, Rimiko; Otoshi, Sachio; Kuwagaki, Reiko; Ishibashi, Yoichiro

    2006-01-01

    The purpose of this research is to clarify the effect of public relations activities in the nuclear energy field and public participation toward the improvement of the risk literacy of nuclear energy. According to the survey results of the actual public relations activities taken by nuclear energy industry, the opportunity for interactive communications between the public and the industry is insufficient. Consequently, we propose building up more opportunities for participation and collaboration of citizens and industries in order to improve interactive communications reflecting public opinions and points of view. (author)

  6. Coordinated research programme on radiation protection in diagnostic radiology in Asia and the Far East

    International Nuclear Information System (INIS)

    Le Heron, J.

    1997-01-01

    Ten Asian countries (China, Vietnam, Thailand, Bangladesh, India, Pakistan, Iran, Philipppines, Malaysia, and Indonesia) are currently participating in a three year programme, as part of a Coordinated Research Programme of the International Atomic Energy Agency, aimed at reducing patient doses in diagnostic radiology through the implementation of optimisation of radiation protection. At the first meeting, held in Manila in September 1995, the project protocol was formulated for the first eighteen months of the programme, where the focus was on plain film radiography. The purpose of the second meeting was to briefly review the first half of the project, and to then come up with protocols for the second phase, where the attention was on dose reduction in fluoroscopic procedures and CT procedures. The second Research Coordination Meeting, held in Manila 3-7 March, was attended by participants from all the countries, with the exception of Iran, plus a consultant from each of Italy and New Zealand, and the scientific secretary from IAEA, Vienna. If the obvious enthusiasm of the participants is able to b maintained on return to their respective countries, then the signs are very healthy for a successful second phase of the programme. (author)

  7. Participation in the IAEA Coordinated Research Project Fumex III: Final Report of AREVA NP

    International Nuclear Information System (INIS)

    2013-01-01

    After the Coordinated Research Project (CRP) FUMEXII, participants asked for a new exercise within an IAEA CRP. This CRP started in December 2008 in Vienna with the first Research Coordination Meeting (RCM). The CRP is titled ''Improvement of Computer Codes Used for Fuel Behaviour Simulation FUMEX III''. The object of FUMEX III were the improvement of fuel rod performance codes for modeling high burnup phenomena in modern fuel. This includes transient behavior, as well as mechanical interaction between pellet and cladding and, in progression to the FUMEX II exercise, fission gas release during various conditions (steady state, load follow, transient). AREVA NP agreed on participating in this exercise under the IAEA research agreement no. 15369 and expressed interest in the modeling of pelletclad mechanical interactions as well as fission gas release under steady state and transient conditions. In this exercise AREVA NP used its new global fuel rod code GALILEO, which is still under development (formerly known under the project name COPERNIC 3). During a Consultants Meeting potential topics and a proposed selection of cases have been prepared, which were discussed during the 1st Research Coordination Meeting (RCM) in Vienna in December 2008. During the discussions a number of additional cases motivated by the participants have been identified. Finally, a case table has been agreed upon, which included several cases for the different topics. Most of the cases have been based on the International Fuel Performance Experiments (IFPE) database, but additional cases have been provided during the exercise (e.g., the AREVA idealized case

  8. Language translation challenges with Arabic speakers participating in qualitative research studies.

    Science.gov (United States)

    Al-Amer, Rasmieh; Ramjan, Lucie; Glew, Paul; Darwish, Maram; Salamonson, Yenna

    2016-02-01

    This paper discusses how a research team negotiated the challenges of language differences in a qualitative study that involved two languages. The lead researcher shared the participants' language and culture, and the interviews were conducted using the Arabic language as a source language, which was then translated and disseminated in the English language (target language). The challenges in relation to translation in cross-cultural research were highlighted from a perspective of establishing meaning as a vital issue in qualitative research. The paper draws on insights gained from a study undertaken among Arabic-speaking participants involving the use of in-depth semi-structured interviews. The study was undertaken using a purposive sample of 15 participants with Type 2 Diabetes Mellitus and co-existing depression and explored their perception of self-care management behaviours. Data analysis was performed in two phases. The first phase entailed translation and transcription of the data, and the second phase entailed thematic analysis of the data to develop categories and themes. In this paper there is discussion on the translation process and its inherent challenges. As translation is an interpretive process and not merely a direct message transfer from a source language to a target language, translators need to systematically and accurately capture the full meaning of the spoken language. This discussion paper highlights difficulties in the translation process, specifically in managing data in relation to metaphors, medical terminology and connotation of the text, and importantly, preserving the meaning between the original and translated data. Recommendations for future qualitative studies involving interviews with non-English speaking participants are outlined, which may assist researchers maintain the integrity of the data throughout the translation process. Copyright © 2015 Elsevier Ltd. All rights reserved.

  9. Participatory research, people with intellectual disabilities and ethical approval: making reasonable adjustments to enable participation.

    Science.gov (United States)

    Northway, Ruth; Howarth, Joyce; Evans, Lynne

    2015-02-01

    The aim of this paper is to explore how making reasonable adjustments to the process of securing ethical approval for research can facilitate the meaningful involvement of people with intellectual disabilities as members of a research team. This is achieved through critical reflection upon the approach taken within one participatory research study whose objective was to explore how people with intellectual disabilities understand abuse. Internationally participatory research studies (in which active involvement of community members in all stages of the research process is sought) are becoming increasingly common in the context of health care and, more specifically, within research involving people with intellectual disabilities. However, whilst it is acknowledged that participatory research gives rise to specific ethical challenges, how (or if) involvement in securing ethical approval is facilitated, is not discussed in most research reports. The significance of this paper is that it seeks to address this gap by exploring how meaningful participation can be promoted by making reasonable adjustments. Within the study, the research team worked in collaboration with the ethics committee to identify potential barriers that could prevent the participation of members of the research team who had intellectual disabilities. Reasonable adjustments (such as redesigning forms) were made to the processes involved in securing ethical approval. This study demonstrated that it is possible to ensure that ethical standards are upheld and the requirements of ethics committees met whilst also facilitating the meaningful involvement of people with intellectual disabilities. The reasonable adjustments approach explored within this paper can be translated into the context of clinical practice: making changes to the way that services are delivered can promote greater involvement of people with intellectual disabilities in their own health care. © 2014 John Wiley & Sons Ltd.

  10. Lung Cancer Screening Participation: Developing a Conceptual Model to Guide Research.

    Science.gov (United States)

    Carter-Harris, Lisa; Davis, Lorie L; Rawl, Susan M

    2016-11-01

    To describe the development of a conceptual model to guide research focused on lung cancer screening participation from the perspective of the individual in the decision-making process. Based on a comprehensive review of empirical and theoretical literature, a conceptual model was developed linking key psychological variables (stigma, medical mistrust, fatalism, worry, and fear) to the health belief model and precaution adoption process model. Proposed model concepts have been examined in prior research of either lung or other cancer screening behavior. To date, a few studies have explored a limited number of variables that influence screening behavior in lung cancer specifically. Therefore, relationships among concepts in the model have been proposed and future research directions presented. This proposed model is an initial step to support theoretically based research. As lung cancer screening becomes more widely implemented, it is critical to theoretically guide research to understand variables that may be associated with lung cancer screening participation. Findings from future research guided by the proposed conceptual model can be used to refine the model and inform tailored intervention development.

  11. Pediatric oncologists' attitudes towards involving adolescents in decision-making concerning research participation.

    Science.gov (United States)

    de Vries, Martine C; Wit, Jan M; Engberts, Dirk P; Kaspers, Gertjan J L; van Leeuwen, Evert

    2010-07-15

    Various regulations and guidelines stipulate the importance of involving adolescents in decision-making concerning research participation. Several studies have shown that in the context of pediatric oncology this involvement is difficult to achieve due to emotional stress, the complexity of research protocols and limited time. Still, up to 80% of adolescents with cancer enter onto a trial during their illness. The aim of this study was to determine clinicians' views and attitudes towards enrolling adolescents in research, considering the difficulties surrounding their involvement in decision-making. A qualitative multicenter study was performed, using in-depth semi-structured interviews on the informed consent process with 15 pediatric hemato-oncologists. Four central themes emerged that characterize clinicians' attitudes towards involving adolescents in the decision-making process: (1) clinicians regard most adolescents as not capable of participating meaningfully in discussions regarding research; (2) clinicians do not always provide adolescents with all information; (3) proxy consent from parents is obtained and is deemed sufficient; (4) clinician-investigator integrity: clinicians judge research protocols as not being harmful and even in the best interest of the adolescent. Clinicians justify not involving adolescents in research discussions by referring to best interest arguments (adolescents' incompetence, proxy consent, and investigator integrity), although this is not in line with legal regulations and ethical guidelines.

  12. Truth in Advertising: Disclosure of Participant Payment in Research Recruitment Materials.

    Science.gov (United States)

    Gelinas, Luke; Lynch, Holly Fernandez; Largent, Emily A; Shachar, Carmel; Cohen, I Glenn; Bierer, Barbara E

    2018-05-01

    The practice of paying research participants has received significant attention in the bioethics literature, but the focus has been almost exclusively on consideration of factors relevant to determining acceptable payment amounts. Surprisingly little attention has been paid to what happens once the payment amount is set. What are the ethical parameters around how offers of payment may be advertised to prospective participants? This article seeks to answer this question, focusing on the ethical and practical issues associated with disclosing information about payment, and payment amounts in particular, in recruitment materials. We argue that it is permissible-and indeed typically ethically desirable-for recruitment materials to disclose the amount that participants will be paid. Further, we seek to clarify the regulatory guidance on "emphasizing" payment in a way that can facilitate design and review of recruitment materials.

  13. Research priorities in health communication and participation: international survey of consumers and other stakeholders.

    Science.gov (United States)

    Synnot, Anneliese; Bragge, Peter; Lowe, Dianne; Nunn, Jack S; O'Sullivan, Molly; Horvat, Lidia; Tong, Allison; Kay, Debra; Ghersi, Davina; McDonald, Steve; Poole, Naomi; Bourke, Noni; Lannin, Natasha; Vadasz, Danny; Oliver, Sandy; Carey, Karen; Hill, Sophie J

    2018-05-08

    To identify research priorities of consumers and other stakeholders to inform Cochrane Reviews in 'health communication and participation' (including such concepts as patient experience, shared decision-making and health literacy). International. We included anyone with an interest in health communication and participation. Up to 151 participants (18-80 years; 117 female) across 12 countries took part, including 48 consumers (patients, carers, consumer representatives) and 75 professionals (health professionals, policymakers, researchers) (plus 25 people who identified as both). Survey. We invited people to submit their research ideas via an online survey open for 4 weeks. Using inductive thematic analysis, we generated priority research topics, then classified these into broader themes. Participants submitted 200 research ideas, which we grouped into 21 priority topics. Key research priorities included: insufficient consumer involvement in research (19 responses), 'official' health information is contradictory and hard to understand (18 responses), communication/coordination breakdowns in health services (15 responses), health information provision a low priority for health professionals (15 responses), insufficient eliciting of patient preferences (14 responses), health services poorly understand/implement patient-centred care (14 responses), lack of holistic care impacting healthcare quality and safety (13 responses) and inadequate consumer involvement in service design (11 responses). These priorities encompassed acute and community health settings, with implications for policy and research. Priority populations of interest included people from diverse cultural and linguistic backgrounds, carers, and people with low educational attainment, or mental illness. Most frequently suggested interventions focused on training and cultural change activities for health services and health professionals. Consumers and other stakeholders want research addressing

  14. The Impact of the Protection of Human Subjects on Research. Working Paper No. 70.

    Science.gov (United States)

    Halpern, Andrew S.

    The author discusses the experimenter's responsibility for the protection of human subjects (such as the handicapped) in research and the impact of this responsibility on methods of doing research. Considered are the types of human rights that are most frequently in need of protection within a research setting (such as the right to privacy); the…

  15. A booklet on participants' rights to improve consent for clinical research: a randomized trial.

    Directory of Open Access Journals (Sweden)

    Jocelyne R Benatar

    Full Text Available OBJECTIVE: Information on the rights of subjects in clinical trials has become increasingly complex and difficult to understand. This study evaluates whether a simple booklet which is relevant to all research studies improves the understanding of rights needed for subjects to provide informed consent. METHODS: 21 currently used informed consent forms (ICF from international clinical trials were separated into information related to the specific research study, and general information on participants' rights. A booklet designed to provide information on participants' rights which used simple language was developed to replace this information in current ICF's Readability of each component of ICF's and the booklet was then assessed using the Flesch-Kincaid Reading ease score (FK. To further evaluate the booklet 282 hospital inpatients were randomised to one of three ways to present research information; a standard ICF, the booklet combined with a short ICF, or the booklet combined with a simplified ICF. Comprehension of information related to the research proposal and to participant's rights was assessed by questionnaire. RESULTS: Information related to participants' rights contributed an average of 44% of the words in standard ICFs, and was harder to read than information describing the clinical trial (FK 25 versus (vs. 41 respectively, p = 0.0003. The booklet reduced the number of words and improved FK from 25 to 42. The simplified ICF had a slightly higher FK score than the standard ICF (50 vs. 42. Comprehension assessed in inpatients was better for the booklet and short ICF 62%, (95% confidence interval (CI 56 to 67 correct, or simplified ICF 62% (CI 58 to 68 correct compared to 52%, (CI 47 to 57 correct for the standard ICF, p = 0.009. This was due to better understanding of questions on rights (62% vs. 49% correct, p = 0.0008. Comprehension of study related information was similar for the simplified and standard ICF (60% vs. 64

  16. A booklet on participants' rights to improve consent for clinical research: a randomized trial.

    Science.gov (United States)

    Benatar, Jocelyne R; Mortimer, John; Stretton, Matthew; Stewart, Ralph A H

    2012-01-01

    Information on the rights of subjects in clinical trials has become increasingly complex and difficult to understand. This study evaluates whether a simple booklet which is relevant to all research studies improves the understanding of rights needed for subjects to provide informed consent. 21 currently used informed consent forms (ICF) from international clinical trials were separated into information related to the specific research study, and general information on participants' rights. A booklet designed to provide information on participants' rights which used simple language was developed to replace this information in current ICF's Readability of each component of ICF's and the booklet was then assessed using the Flesch-Kincaid Reading ease score (FK). To further evaluate the booklet 282 hospital inpatients were randomised to one of three ways to present research information; a standard ICF, the booklet combined with a short ICF, or the booklet combined with a simplified ICF. Comprehension of information related to the research proposal and to participant's rights was assessed by questionnaire. Information related to participants' rights contributed an average of 44% of the words in standard ICFs, and was harder to read than information describing the clinical trial (FK 25 versus (vs.) 41 respectively, p = 0.0003). The booklet reduced the number of words and improved FK from 25 to 42. The simplified ICF had a slightly higher FK score than the standard ICF (50 vs. 42). Comprehension assessed in inpatients was better for the booklet and short ICF 62%, (95% confidence interval (CI) 56 to 67) correct, or simplified ICF 62% (CI 58 to 68) correct compared to 52%, (CI 47 to 57) correct for the standard ICF, p = 0.009. This was due to better understanding of questions on rights (62% vs. 49% correct, p = 0.0008). Comprehension of study related information was similar for the simplified and standard ICF (60% vs. 64% correct, p = 0.68). A booklet

  17. The participation of IPEN in the IAEA coordinated research projects on accelerators driven systems (ADS)

    Energy Technology Data Exchange (ETDEWEB)

    Maiorino, J.R.; Santos, A.; Carluccio, T.; Rossi, P.C.R.; Antunes, A.; Oliveira, F. de; Lee, S.M. [Instituto de Pesquisas Energeticas e Nucleares (IPEN/CNEN-SP), Sao Paulo, SP (Brazil)]. E-mail: maiorino@ipen.br

    2007-07-01

    This paper describes the participation of the IPEN in the International Atomic Energy Agency (IAEA) Coordinated Research Projects(CRP) on Analytical and Experimental Benchmark Analysis on ADS and Low Enriched Uranium Fuel Utilization in ADS. The first CRP has as specific objective to improve the present understanding of the coupling of an external neutron source [e.g. a spallation source in the case of the accelerator driven system (ADS)] with a multiplicative sub-critical core, and the second CRP, or collaborative work, the utilization of LEU in existing or planned ADS facilities. IPEN participate in both CRP through a research contract (13388), and although there are several benchmarks defined in both CRP, presently IPEN is participating in the activities related with reactor physics benchmark of the Yalina Booster facility in Belarus, in the analytical and numerical benchmarking of methods and codes for ADS kinetics, and in the ADS target calculations. Besides, since there are plans to introduce a compact neutron generator in a sub critical core of the IPEN-MB-01 facility, a benchmark of a simulation of such project has been proposed in the LEU-ADS CRP. The paper will review the CRPs with details on the activities in which IPEN is participating. (author)

  18. The participation of IPEN in the IAEA coordinated research projects on accelerators driven systems (ADS)

    International Nuclear Information System (INIS)

    Maiorino, J.R.; Santos, A.; Carluccio, T.; Rossi, P.C.R.; Antunes, A.; Oliveira, F. de; Lee, S.M.

    2007-01-01

    This paper describes the participation of the IPEN in the International Atomic Energy Agency (IAEA) Coordinated Research Projects(CRP) on Analytical and Experimental Benchmark Analysis on ADS and Low Enriched Uranium Fuel Utilization in ADS. The first CRP has as specific objective to improve the present understanding of the coupling of an external neutron source [e.g. a spallation source in the case of the accelerator driven system (ADS)] with a multiplicative sub-critical core, and the second CRP, or collaborative work, the utilization of LEU in existing or planned ADS facilities. IPEN participate in both CRP through a research contract (13388), and although there are several benchmarks defined in both CRP, presently IPEN is participating in the activities related with reactor physics benchmark of the Yalina Booster facility in Belarus, in the analytical and numerical benchmarking of methods and codes for ADS kinetics, and in the ADS target calculations. Besides, since there are plans to introduce a compact neutron generator in a sub critical core of the IPEN-MB-01 facility, a benchmark of a simulation of such project has been proposed in the LEU-ADS CRP. The paper will review the CRPs with details on the activities in which IPEN is participating. (author)

  19. Online Facebook Focus Group Research of Hard-to-Reach Participants

    Directory of Open Access Journals (Sweden)

    Anastasia Aldelina Lijadi

    2015-12-01

    Full Text Available Conducting discovery-oriented qualitative research about the life experiences of hard-to-reach individuals posed several challenges for recruiting participants and collecting rich textual data. In a study pertaining the experiences of Third Culture Kids (TCKs, we explored the benefits of the social media, such as Facebook as a platform to collect data. TCKs are individuals who define their sense of belonging to the third culture trailing their parents moving across borders during their developmental years. Adult TCKs live in many different countries, and accessing and interviewing respondents could be a difficult and costly endeavor. In this article, the authors share their experience conducting online, asynchronous focus groups using a Facebook platform. We reflect upon the process of setting up a secret Facebook focus group for research purposes, recruiting participants, rapport building between facilitator and participants, monitoring and keeping track of participants’ responses, and the dynamics emerging within an online focus group. We also discuss the novelty, limitations, and benefits of the Facebook focus group as an emerging mode for collecting qualitative data from hard-to-reach participants.

  20. Perceptions of parents on the participation of their infants in clinical research

    DEFF Research Database (Denmark)

    Gammelgaard, A; Knudsen, Lisbeth E.; Bisgaard, H

    2006-01-01

    OBJECTIVE: To analyse the motivations and perceptions of parents on the participation of their infants and young children in a comprehensive and invasive clinical research study. METHODS: Semistructured qualitative interviews were conducted with 23 mothers with asthma whose infants and young...... children were participating in the Copenhagen Prospective Study on Asthma in Childhood. The interviews were audiotaped, transcribed and analysed using the template analysis method. RESULTS: Parents were motivated by altruism and by the opportunity to get their child checked regularly by medical experts...... to prevent the possible development of asthma. Parents found it very important that their children enjoyed their visits to the research clinic, and that they could withdraw from the study if their child started responding negatively to those visits. No apparent difference was seen in the attitude between...

  1. Implementation of IAEA coordinated research program and study on strategy for effective participation in the program

    International Nuclear Information System (INIS)

    Choi, P. H.; Kim, G. P.; Kim, M. R.; Sim, J. S.

    2002-05-01

    One of the important aims of this project is the expansion of participation in the CRP with the support of research funds. In order to achieve this aim, the information on the support of research funds was announced, and 31 projects were proposed by May 2001. As a result of evaluation of the projects, 60,100,000 won were funded for these 31 projects. The IAEA announces the next year projects to Member States and invites public participation of new projects in around November every year. However, it was announced at the end of December 2001, and the guide for project proposal was published. In addition to that, there was a briefing for the understanding of the CRP and the guide for project proposals on 19 February 2002

  2. Schizophrenia research participants' responses to protocol safeguards: recruitment, consent, and debriefing.

    Science.gov (United States)

    Roberts, Laura Weiss; Warner, Teddy D; Anderson, Charles T; Smithpeter, Megan V; Rogers, Melinda K

    2004-04-01

    To examine the perspectives and preferences regarding ethically important aspects of recruitment, consent, and debriefing of people with schizophrenia who volunteered for research protocols. A structured interview to assess research-related views of people with schizophrenia was developed and piloted. Data collection occurred at three sites. For this analysis, we examined the subset of responses from schizophrenia patients currently enrolled in a protocol. Data from 28 schizophrenia research volunteers were analyzed. Of these, 22 were men and 11 were voluntary inpatients. Most (n=23) recalled speaking with someone before enrolling in the protocol, and most (n=26) reported trusting the person who told them about it. Participants reported a moderate understanding of their protocols. All but one person (n=27) remembered signing a consent form. Twenty-one volunteers indicated that consent forms are meant to help both the patient and the researcher. Most (n=23) reported making the enrollment decision alone, with 22 making this decision prior to reviewing the consent form. The decision was described as relatively easy. Respondents felt some pressure to enroll, with women experiencing more pressure. Debriefing practices were strongly endorsed by participants. All 28 of the volunteers wished to be informed if a health problem (i.e., "something wrong") was discovered during the protocol. The persons living with schizophrenia who were interviewed for this project expressed interesting perspectives and preferences regarding ethically important aspects of recruitment, consent, and debriefing in clinical research that may help guide efforts to make research processes more attuned to participants and merit further inquiry.

  3. Barriers and Motivators to Participating in mHealth Research Among African American Men.

    Science.gov (United States)

    James, Delores C S; Harville, Cedric

    2017-11-01

    Most African American (AA) men own a smartphone, which positions them to be targeted for a variety of programs, services, and health interventions using mobile devices (mHealth). The goal of this study was to assess AA men's use of technology and the barriers and motivators to participating in mHealth research. A self-administered survey was completed by 311 men. Multinomial logistic regression examined associations between three age groups (18-29 years, 30-50 years, and 51+ years), technology access, and motivators and barriers to participating in mHealth research. Sixty-five percent of men owned a smartphone and a laptop. Men aged 18 to 29 years were more likely willing to use a health app and smartwatch/wristband monitor than older men ( p motivated to participate for a free cell phone/upgraded data plan and contribution to the greater good ( p motivated to become more educated about the topic ( p < .05). Younger men were more likely than older ones to report lack of interest in the topic as a barrier to participating ( p < .01), while older men were more likely than younger ones to cite lack of research targeted to minority communities as a barrier ( p < .05). This study suggests that culturally tailored mHealth research using smartphones may be of interest to AA men interested in risk reduction and chronic disease self-management. Opportunities also exist to educate AA men about the topic at hand and why minority men are being targeted for the programs and interventions.

  4. The Use of Facebook in Recruiting Participants for Health Research Purposes: A Systematic Review

    OpenAIRE

    Whitaker, Christopher; Stevelink, Sharon; Fear, Nicola

    2017-01-01

    Background: Social media is a popular online tool that allows users to communicate and exchange information. It allows digitalcontent such as pictures, videos and websites to be shared, discussed, republished and endorsed by its users, their friends andbusinesses. Adverts can be posted and promoted to specific target audiences by demographics such as region, age or gender.Recruiting for health research is complex with strict requirement criteria imposed on the participants. Traditional resear...

  5. Crocodile years: the traditional image of science and physical scientists' participation in weapons research

    Energy Technology Data Exchange (ETDEWEB)

    Crews, R.J.

    1985-01-01

    This thesis examines one dimension of the relationship between science and the arms race. More specifically, it develops and empirically examines a theoretical model of the relationship between the social demand for defense-related and weapons research, traditional scientific values related to the worldview of classical physics, and differential participation by physical scientists in such research. The theoretical model suggests that an antiquated traditional image of science exists, and that it may explain, in part, participation by physical scientists in defense-related or weapons research. Two major hypotheses are suggested by the model: first, that a constellation of values representing a traditional image of science obtains today among young physical scientists; and second, that those who currently engage (or are willing to engage) in defense-related or weapons research are more likely to agree with the values implicit in the traditional image of science than those who do not (or would not) engage in such research. The theoretical model is located within the sociologies of knowledge and science. This study includes chapters that provide an overview of the literature of these subdisciplines. This investigation concludes with an empirical examination of the model and hypotheses.

  6. Strategies to address participant misrepresentation for eligibility in Web-based research.

    Science.gov (United States)

    Kramer, Jessica; Rubin, Amy; Coster, Wendy; Helmuth, Eric; Hermos, John; Rosenbloom, David; Moed, Rich; Dooley, Meghan; Kao, Ying-Chia; Liljenquist, Kendra; Brief, Deborah; Enggasser, Justin; Keane, Terence; Roy, Monica; Lachowicz, Mark

    2014-03-01

    Emerging methodological research suggests that the World Wide Web ("Web") is an appropriate venue for survey data collection, and a promising area for delivering behavioral intervention. However, the use of the Web for research raises concerns regarding sample validity, particularly when the Web is used for recruitment and enrollment. The purpose of this paper is to describe the challenges experienced in two different Web-based studies in which participant misrepresentation threatened sample validity: a survey study and an online intervention study. The lessons learned from these experiences generated three types of strategies researchers can use to reduce the likelihood of participant misrepresentation for eligibility in Web-based research. Examples of procedural/design strategies, technical/software strategies and data analytic strategies are provided along with the methodological strengths and limitations of specific strategies. The discussion includes a series of considerations to guide researchers in the selection of strategies that may be most appropriate given the aims, resources and target population of their studies. Copyright © 2014 John Wiley & Sons, Ltd.

  7. [The use of interviews in participative intervention and research: the GAM tool as a collective interview].

    Science.gov (United States)

    Sade, Christian; de Barros, Leticia Maria Renault; Melo, Jorge José Maciel; Passos, Eduardo

    2013-10-01

    This paper seeks to assess a way of conducting interviews in line with the ideology of Brazilian Psychiatric Reform. In the methodology of participative intervention and research in mental health, the interview is less a data collection than a data harvesting procedure. It is designed to apply the principles of psychosocial care, autonomy as the basis for treatment, the predominance of the users and of their social networks and civic participation. Inspired by the Explicitation Interview technique, the contention is that the handling of the interview presupposes an open attitude able to promote and embrace different viewpoints. This attitude makes the interview a collective experience of sharing and belonging, allowing participants to reposition themselves subjectively in treatment with the emergence of groupality. As an example of using the interview as a methodological tool in mental health research, we examine research into adaptation of the tool of Autonomous Medication Management (GAM). It is an interventionist approach guided by principles that foster autonomy and the protagonist status of users of psychotropic medication, their quality of life, their rights and recognition of the multiple significances of medication, understood here as a collective interview technique.

  8. Occupational therapy practice community: process evaluation by the participants and researchers

    Directory of Open Access Journals (Sweden)

    Sandra Maria Galheigo

    2015-09-01

    Full Text Available This article presents the results of a participatory action research with occupational therapists in a community of practice which purpose was to discuss the care production provided by occupational therapy to hospitalized children and adolescents. The participants were nine occupational therapists from hospitals of the city of São Paulo. Ten face-to-face meetings were conducted and a Web-mediated environment was created for conducting virtual activities. The face meetings were recorded and tapped. This article aims to present the evaluation made by the participants and researchers about the process experienced in the community. Through content analysis, seventeen reporting units were identified and grouped into four main themes: the dialogic process; theoretical and practical implications; reflective process; participatory process and its barriers. The process evaluation showed that dialogue during the meetings contributed to a sense of belonging, integration, and awareness/group cohesion and made possible discussing and reflecting on topics relevant to the practice of occupational therapist. Direct communication proved to be the main form of exchange among the professionals in the group. The participants working conditions, the computers and virtual environments access issues, the surplus work generated by meetings and the displacement in urban centers were complicating factors for the participant’s greater adhesion. Evaluation showed that this strategy favored the construction of shared knowledge, and its implementation can foster reflection, research development and knowledge production, as well as contribute to the occupational therapist professional practice improvement.

  9. Participation of a non-disputing party in arbitration and protection of the public interest before an ICSID Tribunal

    Directory of Open Access Journals (Sweden)

    Đundić Petar

    2012-01-01

    Full Text Available The paper discusses the need to protect the legitimacy of decision-making process in investment arbitration through public access to the proceedings. Unlike commercial arbitration, investment arbitration entails decisions on state responsibility for measures directed towards protection of environment, lives and health of its population or human rights. Presence of the public interest in such disputes brings under strong criticism a traditional characteristic of arbitration process - its confidentiality. The problem of democratic deficit of decision-making can be resolved, inter alia, by allowing persons who are not parties to the dispute to participate in the proceedings if they consider that their interest might be affected by arbitral award. The 2006 Arbitration Rules of International Centre for Settlement of Investment Disputes envisage, subject to approval of the Tribunal, the right of a non-disputing party to file a written submission with the Tribunal regarding a factual or legal issue connected with the subject matter of the dispute. However, without right of those entities to attend arbitral hearings and, more importantly, without their access to documents submitted during the proceedings, this is not by far enough to give 'friends of the court' a meaningful and significant role.

  10. Cultural "Insiders" and the Issue of Positionality in Qualitative Migration Research: Moving "Across" and Moving "Along" Researcher-Participant Divides

    Directory of Open Access Journals (Sweden)

    Deianira Ganga

    2006-05-01

    Full Text Available Positionality has, to-date, been conceptualised by social scientists as a central component in the process of qualitative (and to an extent quantitative data collection. This paper intends to build upon this conceptualisation by reflecting upon the influence that class and generation can have on qualitative migration research. Specifically, the authors argue that being insiders in the social interview is much more complex and multi-faceted than usually recognised. They also claim that, to a large extent, interviewing within one's own "cultural" community—as an insider—affords the researcher a degree of social proximity that, paradoxically, increases awareness amongst both researcher and participant of the social divisions that exist between them. The authors will use the case of an Italian researcher interviewing Italian migrants in Nottingham (UK and a British researcher interviewing British migrants in Paris (France to illustrate this. In doing so they will first highlight the way in which researchers may "move-up" socio-economically when interviewing, but will also stress that whilst such movement is possible—through strategies of constructing rapport—a certain power imbalance is inevitable. Second, the authors will highlight, through reference to notions of the adopted insider and impartial observer, the way in which interviewers can (at least partially "move across" generational divides within the migrant community. This methodological reflection is designed to aid and improve future research conducted from "inside" the migrant community. URN: urn:nbn:de:0114-fqs060379

  11. Community participation in primary care in Ireland: the need for implementation research.

    LENUS (Irish Health Repository)

    McEvoy, Rachel

    2012-04-30

    There are now several decades of history of community participation in health, with significant international evidence to suggest that there is much to be gained by primary health services and disadvantaged communities working in partnership.In this paper we provide an overview of community participation in primary care, establishing the policy context in which a recent \\'Joint Initiative on Community Participation in Primary Health Care\\' was developed in Ireland. This Initiative was designed to support the involvement of disadvantaged communities and groups in the development of primary health care services at local level.An independent formative evaluation of the Joint Initiative took place between September 2009 and April 2010. We present a summary of key findings from this evaluation. We pay particular attention to the issue of sustaining community participation in newly developed Primary Care Teams (PCTs) in the current and changing economic climate, an issue considered crucial if the documented positive impacts of the Joint Initiative are to be maintained and the potential for health gains in the longer term are to be realised.We then argue that the Joint Initiative referred to in this paper clearly provides a strong prototype for community participation in PCTs in Ireland. We also ask whether it can be replicated across all PCTs in the country and embedded as a core part of thinking and everyday health care. We highlight the need for research to build knowledge about the ways in which innovations such as this can be embedded into ongoing, routine healthcare practice. This research agenda will have relevance for policy makers, practitioners and evaluators in Ireland and other healthcare jurisdictions.

  12. Radiation Protection Programme in the Venezuelan Institute of Scientific Research

    International Nuclear Information System (INIS)

    Lopez Barrios, A.; Diaz, J.; Gonzalez, E.; Lea, D.

    1979-01-01

    The paper describes the main activities of the radiation protection service in the IVIC concerning: 1. the operation of nuclear reactor RV-1, 2. utilization of radioisotopes, 3. radioactive waste management, 4. personal dosimetry and control of internal contamination, 5. environmental radioactivity and 6. technical assistance to other units of the Institute. (author)

  13. Current problems of radiation hygiene, radiation protection and radiobiology. Proceedings of the national (jubilee) conference with international participation

    International Nuclear Information System (INIS)

    Opopol, N.

    2009-01-01

    The proceedings content 28 articles in fields of radiological protection, radioactive pollution, preventive medicine, public health protection. The history of creation, development and activity of the national radiation protection service is described.

  14. Participation of nurses in the execution of clinical research protocol about technological innovation

    Directory of Open Access Journals (Sweden)

    Luciane Patrícia Andreani Cabral

    2015-10-01

    Full Text Available AbstractOBJECTIVETo report the nurse's experience of inclusion in interdisciplinary clinical study about technological innovation, involving people with spinal cord injury.METHODDescriptive experience report. The empirical support was based on notes about perspectives and practice of clinical research, with a multi-professional nursing, physical education, physiotherapy and engineering staff.RESULTThe qualification includes the elaboration of the document for the Ethics Committee, familiarization among the members of staff and with the studied topic, and also an immersion into English. The nurse's knowledge gave support to the uptake of participants and time adequacy for data collection, preparation and assistance of the participants during the intervention and after collection. Nursing theories and processes have contributed to reveal risky diagnoses and the plan of care. It was the nurse's role to monitor the risk of overlapping methodological strictness to the human aspect. The skills for the clinical research must be the object of learning, including students in multidisciplinary researches.CONCLUSIONTo qualify the nurse for clinical research and to potentialize its caregiver essence, some changes are needed in the educational system, professional behavior, attitude and educational assistance.

  15. Barriers to participation in mental health research: are there specific gender, ethnicity and age related barriers?

    Directory of Open Access Journals (Sweden)

    Howard Louise

    2010-12-01

    Full Text Available Abstract Background It is well established that the incidence, prevalence and presentation of mental disorders differ by gender, ethnicity and age, and there is evidence that there is also differential representation in mental health research by these characteristics. The aim of this paper is to a review the current literature on the nature of barriers to participation in mental health research, with particular reference to gender, age and ethnicity; b review the evidence on the effectiveness of strategies used to overcome these barriers. Method Studies published up to December 2008 were identified using MEDLINE, PsycINFO and EMBASE using relevant mesh headings and keywords. Results Forty-nine papers were identified. There was evidence of a wide range of barriers including transportation difficulties, distrust and suspicion of researchers, and the stigma attached to mental illness. Strategies to overcome these barriers included the use of bilingual staff, assistance with travel, avoiding the use of stigmatising language in marketing material and a focus on education about the disorder under investigation. There were very few evaluations of such strategies, but there was evidence that ethnically matching recruiters to potential participants did not improve recruitment rates. Educational strategies were helpful and increased recruitment. Conclusion Mental health researchers should consider including caregivers in recruitment procedures where possible, provide clear descriptions of study aims and describe the representativeness of their sample when reporting study results. Studies that systematically investigate strategies to overcome barriers to recruitment are needed.

  16. Dating and Sexual Violence Research in the Schools: Balancing Protection of Confidentiality with Supporting the Welfare of Survivors.

    Science.gov (United States)

    Sharkey, Jill D; Reed, Lauren A; Felix, Erika D

    2017-12-01

    Rigorous research and program evaluation are needed to understand the experience of dating and sexual violence among youth and the impact of prevention and intervention efforts. Our dilemma in doing this work occurred when youth disclosed dating and sexual violence on a research survey. What responsibility do researchers have to protect survivors' confidentiality as a research participant versus taking steps to ensure the student has the opportunity to access help? In our evaluation of a pilot dating violence prevention program, our protocols employed widely used procedures for providing resources to participants upon their completion of the survey and de-identifying survey data. Upon reviewing preliminary survey results, we became concerned that these established procedures were not sufficient to support research participants who were adolescent survivors of dating and sexual violence. We followed a structured ethical decision-making process to examine legal and ethical considerations, consult with colleagues, consider impacts and alternative solutions, and ultimately find a solution. Through this process, we developed procedures that balance participant confidentiality and the desire to support the welfare of survivors, which other researchers may want to employ when conducting youth sexual and dating violence research in school and community settings. © Society for Community Research and Action 2017.

  17. Balanced performance measurement in research hospitals: the participative case study of a haematology department.

    Science.gov (United States)

    Catuogno, Simona; Arena, Claudia; Saggese, Sara; Sarto, Fabrizia

    2017-08-03

    The paper aims to review, design and implement a multidimensional performance measurement system for a public research hospital in order to address the complexity of its multifaceted stakeholder requirements and its double institutional aim of care and research. The methodology relies on a participative case study performed by external researchers in close collaboration with the staff of an Italian research hospital. The paper develops and applies a customized version of balanced scorecard based on a new set of performance measures. Our findings suggest that it can be considered an effective framework for measuring the research hospital performance, thanks to a combination of generalizable and context-specific factors. By showing how the balanced scorecard framework can be customized to research hospitals, the paper is especially of interest for complex healthcare organizations that are implementing management accounting practices. The paper contributes to the body of literature on the application of the balanced scorecard in healthcare through an examination of the challenges in designing and implementing this multidimensional performance tool. This is one of the first papers that show how the balanced scorecard model can be adapted to fit the specific requirements of public research hospitals.

  18. Factors that influence parental decisions to participate in clinical research: consenters vs nonconsenters.

    Science.gov (United States)

    Hoberman, Alejandro; Shaikh, Nader; Bhatnagar, Sonika; Haralam, Mary Ann; Kearney, Diana H; Colborn, D Kathleen; Kienholz, Michelle L; Wang, Li; Bunker, Clareann H; Keren, Ron; Carpenter, Myra A; Greenfield, Saul P; Pohl, Hans G; Mathews, Ranjiv; Moxey-Mims, Marva; Chesney, Russell W

    2013-06-01

    A child's health, positive perceptions of the research team and consent process, and altruistic motives play significant roles in the decision-making process for parents who consent for their child to enroll in clinical research. This study identified that nonconsenting parents were better educated, had private insurance, showed lower levels of altruism, and less understanding of study design. To determine the factors associated with parental consent for their child's participation in a randomized, placebo-controlled trial. Cross-sectional survey conducted from July 2008 to May 2011. The survey was an ancillary study to the Randomized Intervention for Children with VesicoUreteral Reflux Study. Seven children's hospitals participating in a randomized trial evaluating management of children with vesicoureteral reflux. Parents asked to provide consent for their child's participation in the randomized trial were invited to complete an anonymous online survey about factors influencing their decision. A total of 120 of the 271 (44%) invited completed the survey; 58 of 125 (46%) who had provided consent and 62 of 144 (43%) who had declined consent completed the survey. A 60-question survey examining child, parent, and study characteristics; parental perception of the study; understanding of the design; external influences; and decision-making process. RESULTS Having graduated from college and private health insurance were associated with a lower likelihood of providing consent. Parents who perceived the trial as having a low degree of risk, resulting in greater benefit to their child and other children, causing little interference with standard care, or exhibiting potential for enhanced care, or who perceived the researcher as professional were significantly more likely to consent to participate. Higher levels of understanding of the randomization process, blinding, and right to withdraw were significantly positively associated with consent to participate. CONCLUSIONS AND

  19. [Participative action research; self-care education for the mature adult, a dialogic and empowered process].

    Science.gov (United States)

    Sanchez Gomez, Sheila; Medina Moya, José Luis; Mendoza Pérez de Mendiguren, Beatriz; Ugarte Arena, Ana Isabel; Martínez de Albéniz Arriaran, Mercedes

    2015-11-01

    Explore and transform dialogic-reflexive learning processes oriented to self-care, capacitation, empowerment and health promotion for "mature-adult" collective. Participative action research on a qualitative and sociocritic approach. Data generation methods are SITE: Field work focuses on the development of the educational program "Care is in your hands" that takes place in two villages (Primary Care. Comarca Araba). Through a theoretical sampling involved people who are in a "mature-adult" life stage and three nurses with extensive experience in development health education programs. Participant observation where health education sessions are recorded in video and group reflection on action. To triangulate the data, have been made in-depth interviews with 4 participants. Carried out a content and discourse analysis. Participant and nurses' Previous Frameworks, and these last ones' discourses as well, reveal a current technical rationality (unidirectional, informative,.) yet in practice that perpetuates the role of passive recipient of care. Educational keys constructed from a viewpoint of Dialogic Learning emerge as elements that facilitate overcoming these previous frames limitations. Finally, Reflective Learning launched, has provided advance in professional knowledge and improve health education. Dialogical learning emerges as key to the training and empowerment, where we have seen how practical-reflexive, and not technical, rationality is meanly useful confronting ambiguous and complex situations of self-care practice and education. Copyright © 2014 Elsevier España, S.L.U. All rights reserved.

  20. Psychological, behavioral and social effects of disclosing Alzheimer's disease biomarkers to research participants: a systematic review.

    Science.gov (United States)

    Bemelmans, S A S A; Tromp, K; Bunnik, E M; Milne, R J; Badger, S; Brayne, C; Schermer, M H; Richard, E

    2016-11-10

    Current Alzheimer's disease (AD) research initiatives focus on cognitively healthy individuals with biomarkers that are associated with the development of AD. It is unclear whether biomarker results should be returned to research participants and what the psychological, behavioral and social effects of disclosure are. This systematic review therefore examines the psychological, behavioral and social effects of disclosing genetic and nongenetic AD-related biomarkers to cognitively healthy research participants. We performed a systematic literature search in eight scientific databases. Three independent reviewers screened the identified records and selected relevant articles. Results extracted from the included articles were aggregated and presented per effect group. Fourteen studies met the inclusion criteria and were included in the data synthesis. None of the identified studies examined the effects of disclosing nongenetic biomarkers. All studies but one concerned the disclosure of APOE genotype and were conducted in the USA. Study populations consisted largely of cognitively healthy first-degree relatives of AD patients. In this group, disclosure of an increased risk was not associated with anxiety, depression or changes in perceived risk in relation to family history. Disclosure of an increased risk did lead to an increase in specific test-related distress levels, health-related behavior changes and long-term care insurance uptake and possibly diminished memory functioning. In cognitively healthy research participants with a first-degree relative with AD, disclosure of APOE ε4-positivity does not lead to elevated anxiety and depression levels, but does increase test-related distress and results in behavior changes concerning insurance and health. We did not find studies reporting the effects of disclosing nongenetic biomarkers and only one study included people without a family history of AD. Empirical studies on the effects of disclosing nongenetic biomarkers

  1. Enhancing Hispanic participation in mental health clinical research: development of a Spanish-speaking depression research site.

    Science.gov (United States)

    Aponte-Rivera, Vivianne; Dunlop, Boadie W; Ramirez, Cynthia; Kelley, Mary E; Schneider, Rebecca; Blastos, Beatriz; Larson, Jacqueline; Mercado, Flavia; Mayberg, Helen; Craighead, W Edward

    2014-03-01

    Hispanics, particularly those with limited English proficiency, are underrepresented in psychiatric clinical research studies. We developed a bilingual and bicultural research clinic dedicated to the recruitment and treatment of Spanish-speaking subjects in the Predictors of Remission in Depression to Individual and Combined Treatments (PReDICT) study, a large clinical trial of treatment-naïve subjects with major depressive disorder (MDD). Demographic and clinical data derived from screening evaluations of the first 1,174 subjects presenting for participation were compared between the Spanish-speaking site (N = 275) and the primary English-speaking site (N = 899). Reasons for ineligibility (N = 888) for the PReDICT study were tallied for each site. Compared to English speakers, Spanish speakers had a lower level of education and were more likely to be female, uninsured, and have uncontrolled medical conditions. Clinically, Spanish speakers demonstrated greater depression severity, with higher mean symptom severity scores, and a greater number of previous suicide attempts. Among the subjects who were not randomized into the PReDICT study, Spanish-speaking subjects were more likely to have an uncontrolled medical condition or refuse participation, whereas English-speaking subjects were more likely to have bipolar disorder or a non-MDD depressive disorder. Recruitment of Hispanic subjects with MDD is feasible and may enhance efforts at signal detection, given the higher severity of depression among Spanish-speaking participants presenting for clinical trials. Specific approaches for the recruitment and retention of Spanish-speaking participants are required. © 2013 Wiley Periodicals, Inc.

  2. The use of participant-observation protocol in an industrial engineering research.

    Science.gov (United States)

    Silveira e Silva, Renato da; Sznelwar, Laerte Idal; D'Afonseca e Silva, Victor

    2012-01-01

    Based on literature, this article aims to present the "participant-observation' research protocol, and its practical application in the industrial engineering field, more specifically within the area of design development, and in the case shown by this article, of interiors' design. The main target is to identify the concept of the method, i.e., from its characteristics to structure a general sense about the subject, so that the protocol can be used in different areas of knowledge, especially those ones which are committed with the scientific research involving the expertise from researchers, and subjective feelings and opinions of the users of an engineering product, and how this knowledge can be benefic for product design, contributing since the earliest stage of design.

  3. Games as a Platform for Student Participation in Authentic Scientific Research

    DEFF Research Database (Denmark)

    Magnussen, Rikke; Damgaard Hansen, Sidse; Planke, Tilo

    2014-01-01

    for student-research collaboration is to investigate if and how this type of game concept can strengthen authentic experimental practice and the creation of new knowledge in science education. Researchers and game developers tested the game in three separate high school classes (Class 1, 2, and 3). The tests...... were documented using video observations of students playing the game, qualitative interviews, and qualitative and quantitative questionnaires. The focus of the tests has been to study players' motivation and their experience of learning through participation in authentic scientific inquiry....... In questionnaires conducted in the two first test classes students found that the aspects of doing “real scientific research” and solving physics problems were the more interesting aspects of playing the game. However, designing a game that facilitates professional research collaboration while simultaneously...

  4. The importance of research for the regulatory framework of radiation protection

    International Nuclear Information System (INIS)

    Schmitt-Hannig, A.

    1998-01-01

    On behalf of the Federal ministry for Environment, Nature Conservation and Nuclear Safety (BMU), the Federal Office for Radiation Protection in Germany (BfS) is carrying out a research program in the field of radiation protection. More that 60 research and study contracts in 11 different radiation protection areas are funded every year, and these are carried out mainly by universities and research centers. The results of these projects are used in developing radiation protection regulations, guidelines and procedures to fulfill the special radiation protection tasks of the BMU, the execution of which is required by law. Planning, scientific and administrative management, provision of assistance as well as expert evaluation of the results from these projects lies within the area of responsibility of the BfS. A report issued annually provides information on preliminary and final results of radiation protection research projects in Germany (author) Germany (author)

  5. Participant dropout as a function of survey length in internet-mediated university studies: implications for study design and voluntary participation in psychological research.

    Science.gov (United States)

    Hoerger, Michael

    2010-12-01

    Internet-mediated research has offered substantial advantages over traditional laboratory-based research in terms of efficiently and affordably allowing for the recruitment of large samples of participants for psychology studies. Core technical, ethical, and methodological issues have been addressed in recent years, but the important issue of participant dropout has received surprisingly little attention. Specifically, web-based psychology studies often involve undergraduates completing lengthy and time-consuming batteries of online personality questionnaires, but no known published studies to date have closely examined the natural course of participant dropout during attempted completion of these studies. The present investigation examined participant dropout among 1,963 undergraduates completing one of six web-based survey studies relatively representative of those conducted in university settings. Results indicated that 10% of participants could be expected to drop out of these studies nearly instantaneously, with an additional 2% dropping out per 100 survey items included in the study. For individual project investigators, these findings hold ramifications for study design considerations, such as conducting a priori power analyses. The present results also have broader ethical implications for understanding and improving voluntary participation in research involving human subjects. Nonetheless, the generalizability of these conclusions may be limited to studies involving similar design or survey content.

  6. Researcher-driven Campaigns Engage Nature's Notebook Participants in Scientific Data Collection

    Science.gov (United States)

    Crimmins, Theresa M.; Elmore, Andrew J.; Huete, Alfredo; Keller, Stephen; Levetin, Estelle; Luvall, Jeffrey; Meyers, Orrin; Stylinski, Cathlyn D.; Van De Water, Peter K.; Vukovic, Ana

    2013-01-01

    One of the many benefits of citizen science projects is the capacity they hold for facilitating data collection on a grand scale and thereby enabling scientists to answer questions they would otherwise not been able to address. Nature's Notebook, the plant and animal phenology observing program of the USA National Phenology Network (USA-NPN) suitable for scientists and non-scientists alike, offers scientifically-vetted data collection protocols and infrastructure and mechanisms to quickly reach out to hundreds to thousands of potential contributors. The USA-NPN has recently partnered with several research teams to engage participants in contributing to specific studies. In one example, a team of scientists from NASA, the New Mexico Department of Health, and universities in Arizona, New Mexico, Oklahoma, and California are using juniper phenology observations submitted by Nature's Notebookparticipants to improve predictions of pollen release and inform asthma and allergy alerts. In a second effort, researchers from the University of Maryland Center for Environmental Science are engaging Nature's Notebookparticipants in tracking leafing phenophases of poplars across the U.S. These observations will be compared to information acquired via satellite imagery and used to determine geographic areas where the tree species are most and least adapted to predicted climate change. Researchers in these partnerships receive benefits primarily in the form of ground observations. Launched in 2010, the juniper pollen effort has engaged participants in several western states and has yielded thousands of observations that can play a role in model ground validation. Periodic evaluation of these observations has prompted the team to improve and enhance the materials that participants receive, in an effort to boost data quality. The poplar project is formally launching in spring of 2013 and will run for three years; preliminary findings from 2013 will be presented. Participants in these

  7. NSF GK-12 Fellows as Mentors for K-12 Teachers Participating in Field Research Experiences

    Science.gov (United States)

    Ellins, K.; Perry, E.

    2005-12-01

    The University of Texas Institute for Geophysics (UTIG) recognizes the value of providing educational opportunities to K-12 teachers who play a critical role in shaping the minds of young people who are the future of our science. To that end, UTIG established the "Texas Teachers in the Field" program in 2000 to formalize the participation of K-12 teachers in field programs that included UTIG scientists. In 2002, "Texas Teachers in the Field" evolved through UTIG's involvement in a University of Texas at Austin GK-12 project led by the Environmental Sciences Institute, which enabled UTIG to partner a subset of GK-12 Fellows with teachers participating in geophysical field programs. During the three years of the GK-12 project, UTIG successfully partnered four GK-12 Fellows with five K-12 teachers. The Fellows served as mentors to the teachers, as liaisons between UTIG scientists leading field programs and teachers and their students, and as resources in science, mathematics, and technology instruction. Specifically, Fellows prepared teachers and their students for the field investigations, supervised the design of individual Teacher Research Experience (TRE) projects, and helped teachers to develop standards-aligned curriculum resources related to the field program for use in their own classrooms, as well as broader distribution. Although all but one TRE occurred during the school year, Texas school districts and principals were willing to release teachers to participate because the experience and destinations were so extraordinary (i.e., a land-based program in Tierra del Fuego, Argentina; and research cruises to the Southeast Caribbean Sea and Hess Deep in the Pacific Ocean) and carried opportunities to work with scientists from around the world. This exceptional collaboration of GK-12 Fellows, K-12 teachers and research scientists enriches K-12 student learning and promotes greater enthusiasm for science. The level of mentoring, preparation and follow-up provided

  8. Consensus standards for introductory e-learning courses in human participants research ethics.

    Science.gov (United States)

    Williams, John R; Sprumont, Dominique; Hirtle, Marie; Adebamowo, Clement; Braunschweiger, Paul; Bull, Susan; Burri, Christian; Czarkowski, Marek; Fan, Chien Te; Franck, Caroline; Gefenas, Eugenjius; Geissbuhler, Antoine; Klingmann, Ingrid; Kouyaté, Bocar; Kraehenbhul, Jean-Pierre; Kruger, Mariana; Moodley, Keymanthri; Ntoumi, Francine; Nyirenda, Thomas; Pym, Alexander; Silverman, Henry; Tenorio, Sara

    2014-06-01

    This paper reports the results of a workshop held in January 2013 to begin the process of establishing standards for e-learning programmes in the ethics of research involving human participants that could serve as the basis of their evaluation by individuals and groups who want to use, recommend or accredit such programmes. The standards that were drafted at the workshop cover the following topics: designer/provider qualifications, learning goals, learning objectives, content, methods, assessment of participants and assessment of the course. The authors invite comments on the draft standards and eventual endorsement of a final version by all stakeholders. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

  9. Participation of Asian-American women in cancer treatment research: a pilot study.

    Science.gov (United States)

    Nguyen, Tung T; Somkin, Carol P; Ma, Yifei; Fung, Lei-Chun; Nguyen, Thoa

    2005-01-01

    Few Asian-American women participate in cancer treatment trials. In a pilot study to assess barriers to participation, we mailed surveys to 132 oncologists and interviewed 19 Asian-American women with cancer from Northern California. Forty-four oncologists responded. They reported as barriers language problems, lack of culturally relevant cancer information, and complex protocols. Most stated that they informed Asian-American women about treatment trials. Only four women interviewed knew about trials. Other patient-identified barriers were fear of side effects, language problems, competing needs, and fear of experimentation. Family decision making was a barrier for both oncologists and patients. Compared to non-Asian oncologists, more Asian oncologists have referred Asian-American women to industry trials and identified barriers similar to patients' reports. Our findings indicate that Asian-American women need to be informed about cancer treatment trials, linguistic barriers should be addressed, and future research should evaluate cultural barriers such as family decision making.

  10. Medical Research Participation as "Ethical Intercorporeality": Caring for Bio-Social Bodies in a Mexican Human Papillomavirus (HPV) Study.

    Science.gov (United States)

    Wentzell, Emily

    2017-03-01

    While medical research ethics guidelines frame participants as individual and autonomous, anthropologists emphasize the relational nature of health research participation. I analyze interviews with Mexican male HPV study participants and their wives to examine how research participants themselves focus on relationships when imagining research-related benefits. I argue that couples incorporated the local trope of the Mexican citizenry as a biologically homogeneous national body, which individual members help or harm through their gendered health behavior to understand these benefits. I use the concept of "ethical intercorporeality" to discuss spouses' understandings of themselves as parts of bio-social wholes-the couple, family, and society-that they believed men's research participation could aid both physically and socially. This finding extends the insight that focusing on relationships rather than individuals is necessary for understanding the consequences of medical research by showing how participants themselves might apply this perspective in context-specific ways. © 2016 by the American Anthropological Association.

  11. The Use of Facebook in Recruiting Participants for Health Research Purposes: A Systematic Review.

    Science.gov (United States)

    Whitaker, Christopher; Stevelink, Sharon; Fear, Nicola

    2017-08-28

    Social media is a popular online tool that allows users to communicate and exchange information. It allows digital content such as pictures, videos and websites to be shared, discussed, republished and endorsed by its users, their friends and businesses. Adverts can be posted and promoted to specific target audiences by demographics such as region, age or gender. Recruiting for health research is complex with strict requirement criteria imposed on the participants. Traditional research recruitment relies on flyers, newspaper adverts, radio and television broadcasts, letters, emails, website listings, and word of mouth. These methods are potentially poor at recruiting hard to reach demographics, can be slow and expensive. Recruitment via social media, in particular Facebook, may be faster and cheaper. The aim of this study was to systematically review the literature regarding the current use and success of Facebook to recruit participants for health research purposes. A literature review was completed in March 2017 in the English language using MEDLINE, EMBASE, Web of Science, PubMed, PsycInfo, Google Scholar, and a hand search of article references. Papers from the past 12 years were included and number of participants, recruitment period, number of impressions, cost per click or participant, and conversion rate extracted. A total of 35 studies were identified from the United States (n=22), Australia (n=9), Canada (n=2), Japan (n=1), and Germany (n=1) and appraised using the Critical Appraisal Skills Programme (CASP) checklist. All focused on the feasibility of recruitment via Facebook, with some (n=10) also testing interventions, such as smoking cessation and depression reduction. Most recruited young age groups (16-24 years), with the remaining targeting specific demographics, for example, military veterans. Information from the 35 studies was analyzed with median values being 264 recruited participants, a 3-month recruitment period, 3.3 million impressions, cost

  12. Environmental protection: Researches in National Inst. of Radiological Sciences

    International Nuclear Information System (INIS)

    Fuma, S.; Ban-nai, T.; Doi, M.; Fujimori, A.; Ishii, N.; Ishikawa, Y.; Kawaguchi, I.; Kubota, Y.; Maruyama, K.; Miyamoto, K.; Nakamori, T.; Takeda, H.; Watanabe, Y.; Yanagisawa, K.; Yasuda, T.; Yoshida, S.

    2011-01-01

    Some studies for radiological protection of the environment have been made at the National Inst. of Radiological Sciences (NIRS). Transfer of radionuclides and related elements has been investigated for dose estimation of non-human biota. A parameter database and radionuclide transfer models have been also developed for the Japanese environments. Dose (rate)-effect relationships for survival, growth and reproduction have been investigated in conifers, Arabidopsis, fungi, earthworms, springtails, algae, duckweeds, daphnia and medaka. Also genome-wide gene expression analysis has been carried out by high coverage expression profiling (HiCEP). Effects on aquatic microbial communities have been studied in experimental ecosystem models, i.e., microcosms. Some effects were detected at a dose rate of 1 Gy day -1 and were likely to arise from inter-species interactions. The results obtained at NIRS have been used in development of frameworks for environmental protection by some international bodies, and will contribute to environmental protection in Japan and other Asian countries. (authors)

  13. Research on effectiveness assessment programs for physical protection system

    Energy Technology Data Exchange (ETDEWEB)

    Seo, Janghoon; Yoo, Hosik; Ham, Taekyu [Korea Institute of Nuclear Non-proliferation and Control, Daejeon (Korea, Republic of)

    2015-05-15

    PPS (Physical Protection System) is an integrated set of procedures, installation and human resources to protect valuable assets from physical attack of potential adversaries. Since nuclear facilities or radioactive materials can be attractive targets for terrorists, PPS should be installed and maintained throughout the entire lifecycle of nuclear energy systems. One of key ingredients for effective protection is a reliable assessment procedure of the PPS capability. Due to complexity of possible threat categories and pathways, several pathway analysis programs have been developed to ease analysis or visualization. ASSESS using ASD approach runs fast and adopts a relatively simple modeling process for facility elements. But uncertainty due to assumptions used in modeling might complicate the interpretation of results. On the other hand, 2D pathway program such as TESS can utilize more self-consistent detection probability and delay time since actual pathway on 2D map is available. Also, this pathway visualization helps users understand analysis result more intuitively. But, in general, 2D pathway programs require strong computational power and careful optimization. Another possible difference between two approaches is response force deployment and RFT.

  14. Research on effectiveness assessment programs for physical protection system

    International Nuclear Information System (INIS)

    Seo, Janghoon; Yoo, Hosik; Ham, Taekyu

    2015-01-01

    PPS (Physical Protection System) is an integrated set of procedures, installation and human resources to protect valuable assets from physical attack of potential adversaries. Since nuclear facilities or radioactive materials can be attractive targets for terrorists, PPS should be installed and maintained throughout the entire lifecycle of nuclear energy systems. One of key ingredients for effective protection is a reliable assessment procedure of the PPS capability. Due to complexity of possible threat categories and pathways, several pathway analysis programs have been developed to ease analysis or visualization. ASSESS using ASD approach runs fast and adopts a relatively simple modeling process for facility elements. But uncertainty due to assumptions used in modeling might complicate the interpretation of results. On the other hand, 2D pathway program such as TESS can utilize more self-consistent detection probability and delay time since actual pathway on 2D map is available. Also, this pathway visualization helps users understand analysis result more intuitively. But, in general, 2D pathway programs require strong computational power and careful optimization. Another possible difference between two approaches is response force deployment and RFT

  15. Decision-making capacity for research participation among addicted people: a cross-sectional study.

    Science.gov (United States)

    Morán-Sánchez, Inés; Luna, Aurelio; Sánchez-Muñoz, Maria; Aguilera-Alcaraz, Beatriz; Pérez-Cárceles, Maria D

    2016-01-13

    Informed consent is a key element of ethical clinical research. Addicted population may be at risk for impaired consent capacity. However, very little research has focused on their comprehension of consent forms. The aim of this study is to assess the capacity of addicted individuals to provide consent to research. 53 subjects with DSM-5 diagnoses of a Substance Use Disorder (SUD) and 50 non psychiatric comparison subjects (NPCs) participated in the survey from December 2014 to March 2015. This cross-sectional study was carried out at a community-based Outpatient Treatment Center and at an urban-located Health Centre in Spain. A binary judgment of capacity/incapacity was made guided by the MacArthur Competence Assessment Tool for Clinical Research (MacCAT-CR) and a clinical interview. Demographics and clinical characteristics were assessed by cases notes and the Mini-Mental State Examination, the Global Assessment Functional Scale and the Clinical Global Impression Scale. NPCs performed the best on the MacCAT-CR, and patients with SUD had the worst performance, particularly on the Understanding and Appreciation subscales. 32.7% SUD people lacked research-related decisional capacity. There were no statistically significant differences between the groups in terms of capacity to consent to research. The findings of our study provide evidence that a large proportion of individuals with SUD had decisional capacity for consent to research. It is therefore inappropriate to draw conclusions about capacity to make research decisions on the basis of a SUD diagnosis. In the absence of advanced cognitive impairment, acute withdrawal or intoxication, we should assume that addicted persons possess decision-making capacity. Thus, the view that people with SUD would ipso facto lose decision-making power for research consent is flawed and stigmatizing.

  16. Exercise, physiological function, and the selection of participants for aging research.

    Science.gov (United States)

    Lazarus, Norman R; Harridge, Stephen D R

    2010-08-01

    Regular and vigorous exercisers appear to be the logical choice for studying the inherent aging process as they are essentially free from the complications of disuse. Cross-sectional studies of aging tend to depict an essentially smooth and progressive decrement of physiological function with increasing chronological age. On closer examination of such data, it is seen that although the young have high functional values and the very old low, between these limits, values are widely scattered. We have reevaluated published data from a meta-analysis of 242 studies on men and from a similar study on women. From both data sets, where VO2max was plotted against chronological age, we stratified the VO2max values into bandwidth intervals of 5 ml/kg/minute and then allocated data points to their respective bandwidth irrespective of chronological age. When replotted into bandwidths of functional equivalence, these data show that at the extremes of function, the young are separated from the old. Between these values, each functional bandwidth accommodates a wide age range. The decrement in function with chronological age is not smooth or well defined. We suggest that participants for research into healthy aging should be initially segregated into bands of functionally equivalent VO2max values irrespective of their chronological age. Subsequently, other physiological measurements should be made on every participant in the band in order to begin to define the physiological profile of the participants. By conducting longitudinal studies on every individual, it will be possible to chart the physiological history of each participant through various ages. Segregating participants into cohorts of functional equivalence with data handling blinded to chronological age may be of great utility in increasing our understanding of the inherent aging process.

  17. A multimedia consent tool for research participants in the Gambia: a randomized controlled trial.

    Science.gov (United States)

    Afolabi, Muhammed Olanrewaju; McGrath, Nuala; D'Alessandro, Umberto; Kampmann, Beate; Imoukhuede, Egeruan B; Ravinetto, Raffaella M; Alexander, Neal; Larson, Heidi J; Chandramohan, Daniel; Bojang, Kalifa

    2015-05-01

    To assess the effectiveness of a multimedia informed consent tool for adults participating in a clinical trial in the Gambia. Adults eligible for inclusion in a malaria treatment trial (n = 311) were randomized to receive information needed for informed consent using either a multimedia tool (intervention arm) or a standard procedure (control arm). A computerized, audio questionnaire was used to assess participants' comprehension of informed consent. This was done immediately after consent had been obtained (at day 0) and at subsequent follow-up visits (days 7, 14, 21 and 28). The acceptability and ease of use of the multimedia tool were assessed in focus groups. On day 0, the median comprehension score in the intervention arm was 64% compared with 40% in the control arm (P = 0.042). The difference remained significant at all follow-up visits. Poorer comprehension was independently associated with female sex (odds ratio, OR: 0.29; 95% confidence interval, CI: 0.12-0.70) and residing in Jahaly rather than Basse province (OR: 0.33; 95% CI: 0.13-0.82). There was no significant independent association with educational level. The risk that a participant's comprehension score would drop to half of the initial value was lower in the intervention arm (hazard ratio 0.22, 95% CI: 0.16-0.31). Overall, 70% (42/60) of focus group participants from the intervention arm found the multimedia tool clear and easy to understand. A multimedia informed consent tool significantly improved comprehension and retention of consent information by research participants with low levels of literacy.

  18. Environmental Guidance Program Reference Book: Marine Protection, Research, and Sanctuaries Act and Marine Mammal Protection Act. Revision 3

    Energy Technology Data Exchange (ETDEWEB)

    1988-01-31

    Two laws governing activities in the marine environment are considered in this Reference Book. The Marine Protection, Research, and Sanctuaries Act (MPRSA, P.L. 92-532) regulates ocean dumping of waste, provides for a research program on ocean dumping, and provides for the designation and regulation of marine sanctuaries. The Marine Mammal Protection Act (MMPA, P.L. 92-522) establishes a federal program to protect and manage marine mammals. The Fishery Conservation and Management Act (FCMA, P.L. 94-265) establishes a program to regulate marine fisheries resources and commercial marine fishermen. Because the Department of Energy (DOE) is not engaged in any activities that could be classified as fishing under FCMA, this Act and its regulations have no implications for the DOE; therefore, no further consideration of this Act is given within this Reference Book. The requirements of the MPRSA and the MMPA are discussed in terms of their implications for the DOE.

  19. Perspectives on Research Participation and Facilitation Among Dialysis Patients, Clinic Personnel, and Medical Providers: A Focus Group Study.

    Science.gov (United States)

    Flythe, Jennifer E; Narendra, Julia H; Dorough, Adeline; Oberlander, Jonathan; Ordish, Antoinette; Wilkie, Caroline; Dember, Laura M

    2017-12-19

    Most prospective studies involving individuals receiving maintenance dialysis have been small, and many have had poor clinical translatability. Research relevance can be enhanced through stakeholder engagement. However, little is known about dialysis clinic stakeholders' perceptions of research participation and facilitation. The objective of this study was to characterize the perspectives of dialysis clinic stakeholders (patients, clinic personnel, and medical providers) on: (1) research participation by patients and (2) research facilitation by clinic personnel and medical providers. We also sought to elucidate stakeholder preferences for research communication. Qualitative study. 7 focus groups (59 participants: 8 clinic managers, 14 nurses/patient care technicians, 8 social workers/dietitians, 11 nephrologists/advanced practice providers, and 18 patients/care partners) from 7 North Carolina dialysis clinics. Clinics and participants were purposively sampled. Focus groups were recorded and transcribed. Thematic analysis. We identified 11 themes that captured barriers to and facilitators of research participation by patients and research facilitation by clinic personnel and medical providers. We collapsed these themes into 4 categories to create an organizational framework for considering stakeholder (narrow research understanding, competing personal priorities, and low patient literacy and education levels), relationship (trust, buy-in, and altruistic motivations), research design (convenience, follow-up, and patient incentives), and dialysis clinic (professional demands, teamwork, and communication) aspects that may affect stakeholder interest in participating in or facilitating research. These themes appear to shape the degree of research readiness of a dialysis clinic environment. Participants preferred short research communications delivered in multiple formats. Potential selection bias and inclusion of English-speaking participants only. Our findings

  20. The influence of race and ethnicity on becoming a human subject: Factors associated with participation in research

    Directory of Open Access Journals (Sweden)

    Mary A. Garza, PhD

    2017-09-01

    Full Text Available Inroduction: The purpose of this study was to explore factors associated with willingness of African Americans and Latinos to participate in biomedical and public health research and to delineate factors that influence the decision to become a human subject. Methods: We present results from a 2010 random digit-dial telephone survey of 2,455 African American (N = 1191 and Latino (N = 1264 adults. We used standard measures to assess knowledge of research, terminology, informed consent procedures, previous participation in research, health care experiences, social support, risk perception, religiousness, and trust. Results: Over 60% of both African Americans and Latinos reported they believed people in medical research are pressured into participating. Over 50% said that it was not at all important to have someone of the same race/ethnicity ask them to participate. In a sub-sample of 322 African Americans and 190 Latinos who had previously been asked to participate in a research study, 63% of African Americans and 65% of Latinos consented to participate in a study. Finally, both African Americans (57% and Latinos (68% reported willingness to participate in future research. Overall, the multivariate analysis explained 29% of the variability in willingness to participate in future research. Conclusions: Results suggest that African Americans and Latinos have no automatic predisposition to decline participation in research studies. These results can inform culturally tailored interventions for ethical recruitment of minorities into research and clinical trials.

  1. Participation of the research institutes in the safety aspects of the Laguna Verde nuclear power plant

    International Nuclear Information System (INIS)

    Sanchez G, J.

    1991-01-01

    The main activities undertaken by two research institutes of Mexico, the Instituto de Investigaciones Electricas and the Instituto Nacional de Investigaciones Nucleares, related to the safety of the Laguna Verde Nuclear Power Plant, are described. Among these activities, the development of a system for data acquisition and analysis during pre-operational tests, the design and construction of a full-scope simulator, the in-core fuel management and the establishment of an equipment qualification laboratory, stand out. It is considered that there exists a large potential for further participation. (author)

  2. Radiation protection research during the Second World War

    International Nuclear Information System (INIS)

    Harder, Dietrich

    2011-01-01

    The president commission of the Max-Planck-Gesellschaft studied the contribution of German scientists to research projects during the Second World War, classified as ''important for the war''. The study is also thought as remembrance to the victims of these research projects. During the last years the history of the field office Oberschlema of the Kaiser-Wilhelm-Institute for biophysics was and the radium research institute Oberschlema was investigated. Obviously there were no casualties among the voluntary test persons.

  3. Research to protect, restore, and manage the environment

    National Research Council Canada - National Science Library

    Committee on Environmental Research, National Research Council

    This book assesses the strengths and weaknesses of current environmental research programs, describes the desirable characteristics of an effective program, and recommends cultural and organizational...

  4. Dadirri: Using a Philosophical Approach to Research to Build Trust between a Non-Indigenous Researcher and Indigenous Participants

    Directory of Open Access Journals (Sweden)

    Megan Marie Stronach

    2014-09-01

    Full Text Available Abstract: This article focuses on a philosophical approach employed in a PhD research project that set out to investigate sport career transition (SCT experiences of elite Indigenous Australian sportsmen. The research was necessary as little is known about the transition of this cohort to a life after sport, or their experiences of retirement. A key problem within the SCT paradigm is a presumption that an end to elite sport requires a process of adjustment that is common to all sportspeople—a rather narrow perspective that fails to acknowledge the situational complexity and socio-cultural diversity of elite athletes. With such a range of personal circumstances, it is reasonable to suppose that athletes from different cultural groups will have different individual SCT needs. The researcher is non-Indigenous and mature aged: she encountered a number of challenges in her efforts to understand Indigenous culture and its important sensitivities, and to build trust with the Indigenous male participants she interviewed. An Indigenous philosophy known as Dadirri, which emphasises deep and respectful listening, guided the development of the research design and methodology. Consistent with previous studies conducted by non-Indigenous researchers, an open-ended and conversational approach to interviewing Indigenous respondents was developed. The objective was for the voices of the athletes to be heard, allowing the collection of rich data based on the participants’ perspectives about SCT. An overview of the findings is presented, illustrating that Indigenous athletes experience SCT in complex and distinctive ways. The article provides a model for non-Indigenous researchers to conduct qualitative research with Indigenous people.

  5. Mentoring in Clinical-Translational Research: A Study of Participants in Master's Degree Programs.

    Science.gov (United States)

    McGinn, Aileen P; Lee, Linda S; Baez, Adriana; Zwanziger, Jack; Anderson, Karl E; Seely, Ellen W; Schoenbaum, Ellie

    2015-12-01

    Research projects in translational science are increasingly complex and require interdisciplinary collaborations. In the context of training translational researchers, this suggests that multiple mentors may be needed in different content areas. This study explored mentoring structure as it relates to perceived mentoring effectiveness and other characteristics of master's-level trainees in clinical-translational research training programs. A cross-sectional online survey of recent graduates of clinical research master's program was conducted. Of 73 surveys distributed, 56.2% (n = 41) complete responses were analyzed. Trainees were overwhelmingly positive about participation in their master's programs and the impact it had on their professional development. Overall the majority (≥75%) of trainees perceived they had effective mentoring in terms of developing skills needed for conducting clinical-translational research. Fewer trainees perceived effective mentoring in career development and work-life balance. In all 15 areas of mentoring effectiveness assessed, higher rates of perceived mentor effectiveness was seen among trainees with ≥2 mentors compared to those with solo mentoring (SM). In addition, trainees with ≥2 mentors perceived having effective mentoring in more mentoring aspects (median: 14.0; IQR: 12.0-15.0) than trainees with SM (median: 10.5; IQR: 8.0-14.5). Results from this survey suggest having ≥2 mentors may be beneficial in fulfilling trainee expectations for mentoring in clinical-translational training. © 2015 Wiley Periodicals, Inc.

  6. Mentoring in Clinical‐Translational Research: A Study of Participants in Master's Degree Programs

    Science.gov (United States)

    Lee, Linda S.; Baez, Adriana; Zwanziger, Jack; Anderson, Karl E.; Seely, Ellen W.; Schoenbaum, Ellie

    2015-01-01

    Abstract Research projects in translational science are increasingly complex and require interdisciplinary collaborations. In the context of training translational researchers, this suggests that multiple mentors may be needed in different content areas. This study explored mentoring structure as it relates to perceived mentoring effectiveness and other characteristics of master's‐level trainees in clinical‐translational research training programs. A cross‐sectional online survey of recent graduates of clinical research master's program was conducted. Of 73 surveys distributed, 56.2% (n = 41) complete responses were analyzed. Trainees were overwhelmingly positive about participation in their master's programs and the impact it had on their professional development. Overall the majority (≥75%) of trainees perceived they had effective mentoring in terms of developing skills needed for conducting clinical‐translational research. Fewer trainees perceived effective mentoring in career development and work‐life balance. In all 15 areas of mentoring effectiveness assessed, higher rates of perceived mentor effectiveness was seen among trainees with ≥2 mentors compared to those with solo mentoring (SM). In addition, trainees with ≥2 mentors perceived having effective mentoring in more mentoring aspects (median: 14.0; IQR: 12.0–15.0) than trainees with SM (median: 10.5; IQR: 8.0–14.5). Results from this survey suggest having ≥2 mentors may be beneficial in fulfilling trainee expectations for mentoring in clinical‐translational training. PMID:26534872

  7. Preparation and participation of undergraduate students to inform culturally sensitive research.

    Science.gov (United States)

    Wells, Jo Nell; Cagle, Carolyn Spence

    2009-07-01

    Most student work as research assistants occurs at the graduate level of nursing education, and little is known about the role of undergraduate students as research assistants (RAs) in major research projects. Based on our desire to study Mexican American (MA) cancer caregivers, we needed bilingual and bicultural RAs to serve as data collectors with women who spoke Spanish and possessed cultural beliefs that influenced their caregiving. Following successful recruitment, orientation, and mentoring based on Bandura's social learning theory [Bandura, A., 2001. Social learning theory: an agentic perspective. Annual Review of Psychology 52, 1-26] and accepted teaching-learning principles, RAs engaged in various behaviors that facilitated study outcomes. Faculty researchers, RAs, and study participants benefitted greatly from the undergraduate student involvement in this project. This article describes successful student inclusion approaches, ongoing faculty-RA interactions, and lessons learned from the research team experience. Guidelines discussed support the potential for making the undergraduate RA role a useful and unique learning experience.

  8. Research ethics across the 49th parallel: the potential value of pilot testing "equivalent protections" in Canadian research institutions.

    Science.gov (United States)

    Lavery, James V; McDonald, Michael; Meslin, Eric M

    2005-01-01

    Canada and the United States share the world's largest trade partnership and an increasing concern about divergent regulatory approaches to common industries. Canadian research institutes receive more research funding from the U.S. National Institutes of Health than any other country, much of it to fund multi-centre and collaborative research between the two countries. Because of these close economic and research ties, and the extensive similarities between the two countries in the review and oversight of ethics in human subjects research, we propose that Canada would be an ideal country for a pilot-test of the feasibility of "equivalent protections," a U.S. regulation that permits comparison of protections for human subjects between institutions in the two countries. The "equivalent protections" has been advocated by various bodies in the United States as a potentially beneficial mechanism for improving oversight of foreign trials. As well, we argue that "equivalent protections" could prove to be valuable for Canada in five specific ways: (1) by potentially reducing administrative burden on Canadian research institutions administering U.S. federal research funding; (2) by creating symbolic value of an explicit recognition by the United States that procedures normally followed for the protection of human subjects in Canadian research institutions are at least equivalent to those provided by the U.S. regulations; (3) by lowering the opportunity cost of investing in research in Canada; (4) by affording Canada an opportunity to enhance its leadership role in international research by offering an alternative to the U.S. regulatory model for the protection of human subjects; and (5) by providing a model for how the idea of equivalent protections might be addressed for research funded by Canadian agencies but conducted in other countries.

  9. Stakeholder Participation in Research Design and Decisions: Scientists, Fishers, and Mercury in Saltwater Fish

    Science.gov (United States)

    Burger, Joanna; Gochfeld, Michael; Fote, Tom

    2015-01-01

    Individuals who fish and eat self-caught fish make decisions about where to fish, the type to eat, and the quantity to eat. Federal and state agencies often issue consumption advisories for some fish with high mercury (Hg) concentrations, but seldom provide either the actual metal levels to the general public, or identify the fish that have low contaminant levels. Community participatory research is of growing importance in defining, studying, and resolving complex exposure and risk issues, and this paper is at the intersection of traditional stakeholder approaches and community-based participatory research. The objective of this paper is to describe the process whereby stakeholders (fishers), were involved in directing and refining research questions to address their particular informational needs about mercury levels in fish, potential risks, and methods to maintain health, by balancing the risks and benefits of fish consumption. A range of stakeholders, mainly individual fishers, fishing organizations, and other scientists, were involved at nearly every stage. Community participants influenced many aspects of the design and implementation of the research, in the determination of which fish species to sample, in the collection of the samples, and in the final analyses and synthesis, as well as the communication of results and implications of the research through their fishing club publications, talks and gatherings. By involving the most interested and affected communities, the data and conclusions are relevant to their needs because the fish examined were those they ate and wanted information about, and directly address concerns about the risk from consuming self-caught fish. Although mercury levels in fish presumed to be high in mercury are known, little information was available to the fishermen on mercury levels in fish that were low and thus provided little risk to their families. While community participatory research is more time-consuming and expensive

  10. An Examination of Incentive Strategies to Increase Participation in Outcomes Research for an Adolescent Inpatient Unit.

    Science.gov (United States)

    Ha, Carolyn; Madan, Alok; Long, Tessa A; Sharp, Carla

    2016-05-01

    Tracking adolescent outcomes after inpatient hospitalization is important in informing clinical care for this age group, as inpatient care is one of the most expensive treatment modalities. This study examined 4 incentive strategies used to maintain adolescent participation in follow-up research (at 6, 12, and 18 mo) after their discharge from the hospital (N=267). A generalized estimation equation approach was taken to investigate whether different incentive strategies predicted adolescent completion of the follow-up assessments at each time point. Findings demonstrate that implementation of social worker contact significantly differed from other incentive strategies in increasing adolescent completion of follow-up assessments (Z=2.51, P=0.012) over the 3 time points, even when controlling for age and sex. Although these findings ultimately need to be confirmed through a randomized controlled study of incentive strategies, they provide preliminary support for the notion that relational incentives, such as maintaining contact with a member of the clinical team at the hospital, may be particularly important in promoting adolescent participation in outcomes research.

  11. Seven layers of security to help protect biomedical research facilities.

    Science.gov (United States)

    Mortell, Norman

    2010-04-01

    In addition to risks such as theft and fire that can confront any type of business, the biomedical research community often faces additional concerns over animal rights extremists, infiltrations, data security and intellectual property rights. Given these concerns, it is not surprising that the industry gives a high priority to security. This article identifies security threats faced by biomedical research companies and shows how these threats are ranked in importance by industry stakeholders. The author then goes on to discuss seven key 'layers' of security, from the external environment to the research facility itself, and how these layers all contribute to the creation of a successfully secured facility.

  12. Women's experiences of participating in a prospective, longitudinal postpartum depression study: insights for perinatal mental health researchers.

    Science.gov (United States)

    Andrighetti, Heather J; Semaka, Alicia; Austin, Jehannine C

    2017-08-01

    Barriers to recruitment for research on mental illness include participant distrust of researchers and social stigma. Though these issues may be acutely important in perinatal mental health research, they remain unexplored in this context. In order to inform strategies to more fully engage women in perinatal mental health research, we explored the motivations and experiences of women with a history of major depressive disorder who participated in a prospective longitudinal research study on postpartum depression (PPD). Sixteen women with a history of depression who had either completed or recently made a decision about participation in a longitudinal research study about PPD were interviewed by telephone. Qualitative, semi-structured interviews explored participants' decision-making about, and experiences of, participation. Interviews were audio-recorded, transcribed, and qualitatively analyzed using elements of grounded theory methodology. Follow-up interviews were conducted with four participants to refine and clarify preliminary results. Foundational elements necessary for women to consider participating in PPD research included personal acceptance of illness and trust in the research team/institution. Other main motivators included perceived personal relevance, anticipated benefits (including access to support/resources, learning opportunities, and improved self-worth), altruism, and accessible study procedures. Our data suggest that participating in perinatal mental health research may help women make meaning of their mental illness experience and is perceived as providing support. The findings-particularly around the importance of participant-researcher rapport and accessibility of study design-may inform strategies that improve participation rates, decrease attrition, and maximize participant benefits in perinatal mental health research.

  13. What Affects People's Willingness to Participate in Qualitative Research? An Experimental Comparison of Five Incentives

    Science.gov (United States)

    Kelly, Bridget; Margolis, Marjorie; McCormack, Lauren; LeBaron, Patricia A.; Chowdhury, Dhuly

    2017-01-01

    The literature on factors that influence participation in qualitative research is lacking. We conducted an experiment with a nationally representative sample to test the impact of different incentive types and amounts on willingness to participate in a hypothetical qualitative interview. We randomized participants from an online panel to one of…

  14. Researches carried out by Japan Atomic Energy Research Institute in the field of environmental protection

    International Nuclear Information System (INIS)

    Kavakami, Yu.

    2000-01-01

    The results of works, accomplished by the Japanese Atomic Energy Research Institute, related to evaluation of the nuclear facilities effect on the environmental medium, are considered. The analytical results of studies on the environmental radioactivity with an account of meteorological aspects, evaluation of the nuclear facilities impact on the environmental medium are presented. Studies on the radionuclide behavior in the environmental medium cover large range of problems: distribution of natural and artificial radionuclides in the surface medium and their migration; evaluation of the human radiation doses on the account of radionuclides; environmental medium protection and risk evaluation. The method for measuring the 90 Sr concentrations with application of ion-exchange tars and a simple method for determining the radon activity with application of liquid scintillators were developed in the process of the study on creation of the environmental medium monitoring. The studies, related to the content and behavior of tritium, Pu, 137 Cs, 247 Am, as well as mercury and other heavy metals in the environmental medium were carried out. The methods for evaluating the NPPs radiation effect on the population with an account of the radioactive substances releases both by normal operation and in the emergency situations, were developed. Attention is also paid to research programs and developed codes [ru

  15. Structural and Interpersonal Benefits and Risks of Participation in HIV Research: Perspectives of Female Sex Workers in Guatemala

    Science.gov (United States)

    Goldenberg, Shira M.; Mindt, Monica Rivera; Jimenez, Teresita Rocha; Brouwer, Kimberly C.; Miranda, Sonia Morales; Fisher., Celia B.

    2016-01-01

    This study explored perceived benefits and risks of participation in HIV research among 33 female sex workers in Tecun Uman, Guatemala. Stigma associated with sex work and HIV was a critical barrier to research participation. Key benefits of participation included access to HIV/STI prevention and testing, as well as positive and trusting relationships between sex workers and research teams. Control exerted by managers had mixed influences on perceived research risks and benefits. Results underscore the critical need for HIV investigators to develop population-tailored procedures to reduce stigma, engage managers, and reinforce trusting, reciprocal relationships between sex work communities and researchers. PMID:27840564

  16. Scientific research and development facing environmental protection: needs and deontology

    Energy Technology Data Exchange (ETDEWEB)

    Soete, G.G. de (Institut Francais du Petrole (IFP), 92 - Rueil-Malmaison (France))

    The research needs required by energy-producing and consuming industries are addressed and the deonotological implications of both these human activities with respect to planetary ecology are highlighted. (author).

  17. From beliefs to patterns of participation – shifting the research perspective on teachers

    DEFF Research Database (Denmark)

    Skott, Jeppe; Larsen, Dorte Moeskær; Østergaard, Camilla Hellsten

    2011-01-01

    Belief research was introduced to mathematics education in the early 1980s. It challenged the primarily cognitive and mathematical agenda of the time by investigating the character and significance of mental meta-constructs called beliefs. Particular attention has ever since been paid to teachers......, we in a much longer section present and analyse data on the case of a teacher, Susanne, whom we follow prior to and after her graduation from college. The overall intention is to suggest a change of research perspective from beliefs to patterns of participation.......Belief research was introduced to mathematics education in the early 1980s. It challenged the primarily cognitive and mathematical agenda of the time by investigating the character and significance of mental meta-constructs called beliefs. Particular attention has ever since been paid to teachers......’ beliefs and their role in instruction. Belief research has been troubled by conceptual and methodological problems since its early beginnings, and most of these are still unresolved. This indicates that it may be time to adopt a different perspective, if we are to understand the role of the teacher...

  18. Procedures of recruiting, obtaining informed consent, and compensating research participants in Qatar: findings from a qualitative investigation.

    Science.gov (United States)

    Killawi, Amal; Khidir, Amal; Elnashar, Maha; Abdelrahim, Huda; Hammoud, Maya; Elliott, Heather; Thurston, Michelle; Asad, Humna; Al-Khal, Abdul Latif; Fetters, Michael D

    2014-02-04

    Very few researchers have reported on procedures of recruiting, obtaining informed consent, and compensating participants in health research in the Arabian Gulf Region. Empirical research can inform the debate about whether to adjust these procedures for culturally diverse settings. Our objective was to delineate procedures related to recruiting, obtaining informed consent, and compensating health research participants in the extremely high-density multicultural setting of Qatar. During a multistage mixed methods project, field observations and qualitative interviews were conducted in a general medicine clinic of a major medical center in Qatar. Participants were chosen based on gender, age, literacy, and preferred language, i.e., Arabic, English, Hindi and Urdu. Qualitative analysis identified themes about recruitment, informed consent, compensation, and other research procedures. A total of 153 individuals were approached and 84 enrolled; the latter showed a diverse age range (18 to 75 years); varied language representation: Arabic (n = 24), English (n = 20), Hindi (n = 20), and Urdu (n = 20); and balanced gender distribution: women (n = 43) and men (n = 41). Primary reasons for 30 declinations included concern about interview length and recording. The study achieved a 74% participation rate. Qualitative analytics revealed key themes about hesitation to participate, decisions about participation with family members as well as discussions with them as "incidental research participants", the informed consent process, privacy and gender rules of the interview environment, reactions to member checking and compensation, and motivation for participating. Vulnerability emerged as a recurring issue throughout the process among a minority of participants. This study from Qatar is the first to provide empirical data on recruitment, informed consent, compensation and other research procedures in a general adult population in the Middle East and Arabian Gulf. This

  19. Developing Changes in Our Reading of the World: A Pedagogical Proposal from Participative Action Research

    Directory of Open Access Journals (Sweden)

    Simona Trovato-Apollaro

    2017-04-01

    Full Text Available This paper presents the results of a research conducted with the group Women of Theater from Alajuelita. The research intended to answer the question of how to develop changes in our reading of the world. The goal of our study was the co-researchers’ raising awareness process leading them, from themselves, and by means of the abovementioned group, to read, interpret and reconstruct the environment in order to yield transformations in their lives and community. Through reflection, the process was investigated on the basis of the pedagogical practices of Augusto Boal´s Theater of Oppressed (Boal, 1980, as they were applied at the theater workshop together with the group of Women of Theather, at the library of the Educative Center Los Pinos in Alajuelita. The main elements of the implemented methodology respond to the Participative Action Research (PAR, where the dialectical participative relationship and the collective discussion make it possible the creation of learning. We used audio recordings as data collection tools, which were later systematized for their analysis. The paradigmatic position assumed was inspired by an approach related to the concept of complexity. This concept proposes a holistic view of reality, life, and, so, of pedagogy. According to such a view, we all are one, and the multiplicity is interconnected with each one of its parts, in continuous entropy. Under this approach, where the world is a system of systems interconnected among themselves, the main finding was to perceive pedagogy as an instrument for humanization, a magical object capable of valuing diversity and transforming our thoughts, life styles and values, and, in consequence, our reading of the world. We considered that such an important finding might help to develop changes in human beings and might inspire us to assume an ecological perspective towards relationships. Such a perspective might give rise to deep transformations in our social, political and

  20. Broadening participation in community problem solving: a multidisciplinary model to support collaborative practice and research.

    Science.gov (United States)

    Lasker, Roz D; Weiss, Elisa S

    2003-03-01

    Over the last 40 years, thousands of communities-in the United States and internationally-have been working to broaden the involvement of people and organizations in addressing community-level problems related to health and other areas. Yet, in spite of this experience, many communities are having substantial difficulty achieving their collaborative objective, and many funders of community partnerships and participation initiatives are looking for ways to get more out of their investment. One of the reasons we are in this predicament is that the practitioners and researchers who are interested in community collaboration come from a variety of contexts, initiatives, and academic disciplines, and few of them have integrated their work with experiences or literatures beyond their own domain. In this article, we seek to overcome some of this fragmentation of effort by presenting a multidisciplinary model that lays out the pathways by which broadly participatory processes lead to more effective community problem solving and to improvements in community health. The model, which builds on a broad array of practical experience as well as conceptual and empirical work in multiple fields, is an outgrowth of a joint-learning work group that was organized to support nine communities in the Turning Point initiative. Following a detailed explication of the model, the article focuses on the implications of the model for research, practice, and policy. It describes how the model can help researchers answer the fundamental effectiveness and "how-to" questions related to community collaboration. In addition, the article explores differences between the model and current practice, suggesting strategies that can help the participants in, and funders of, community collaborations strengthen their efforts.

  1. [Radiation protection in medical research : Licensing requirement for the use of radiation and advice for the application procedure].

    Science.gov (United States)

    Minkov, V; Klammer, H; Brix, G

    2017-07-01

    In Germany, persons who are to be exposed to radiation for medical research purposes are protected by a licensing requirement. However, there are considerable uncertainties on the part of the applicants as to whether licensing by the competent Federal Office for Radiation Protection is necessary, and regarding the choice of application procedure. The article provides explanatory notes and practical assistance for applicants and an outlook on the forthcoming new regulations concerning the law on radiation protection of persons in the field of medical research. Questions and typical mistakes in the application process were identified and evaluated. The qualified physicians involved in a study are responsible for deciding whether a license is required for the intended application of radiation. The decision can be guided by answering the key question whether the study participants would undergo the same exposures regarding type and extent if they had not taken part in the study. When physicians are still unsure about their decision, they can seek the advisory service provided by the professional medical societies. Certain groups of people are particularly protected through the prohibition or restriction of radiation exposure. A simplified licensing procedure is used for a proportion of diagnostic procedures involving radiation when all related requirements are met; otherwise, the regular licensing procedure should be used. The new radiation protection law, which will enter into force on the 31st of december 2018, provides a notification procedure in addition to deadlines for both the notification and the licensing procedures. In the article, the authors consider how eligible studies involving applications of radiation that are legally not admissible at present may be feasible in the future, while still ensuring a high protection level for study participants.

  2. 75 FR 37813 - Secretary's Advisory Committee on Human Research Protections

    Science.gov (United States)

    2010-06-30

    ... SACHRP about the application of subpart A of 45 CFR part 46 in the current research environment. This... will be a panel of speakers discussing the emergence of ethics consultations services, and whether such ethical discussions should occur more appropriately within the domain of the IRB. July 20 will conclude...

  3. 77 FR 58383 - Secretary's Advisory Committee on Human Research Protections

    Science.gov (United States)

    2012-09-20

    ... the public who wish to have printed materials distributed to SACHRP members for this scheduled meeting should submit materials to the Executive Director, SACHRP, prior to the close of business October 1, 2012... human subjects research adopted by various agencies or offices within HHS would benefit from...

  4. Implementing community-based provider participation in research: an empirical study

    Science.gov (United States)

    2012-01-01

    Background Since 2003, the United States National Institutes of Health (NIH) has sought to restructure the clinical research enterprise in the United States by promoting collaborative research partnerships between academically-based investigators and community-based physicians. By increasing community-based provider participation in research (CBPPR), the NIH seeks to advance the science of discovery by conducting research in clinical settings where most people get their care, and accelerate the translation of research results into everyday clinical practice. Although CBPPR is seen as a promising strategy for promoting the use of evidence-based clinical services in community practice settings, few empirical studies have examined the organizational factors that facilitate or hinder the implementation of CBPPR. The purpose of this study is to explore the organizational start-up and early implementation of CBPPR in community-based practice. Methods We used longitudinal, case study research methods and an organizational model of innovation implementation to theoretically guide our study. Our sample consisted of three community practice settings that recently joined the National Cancer Institute’s (NCI) Community Clinical Oncology Program (CCOP) in the United States. Data were gathered through site visits, telephone interviews, and archival documents from January 2008 to May 2011. Results The organizational model for innovation implementation was useful in identifying and investigating the organizational factors influencing start-up and early implementation of CBPPR in CCOP organizations. In general, the three CCOP organizations varied in the extent to which they achieved consistency in CBPPR over time and across physicians. All three CCOP organizations demonstrated mixed levels of organizational readiness for change. Hospital management support and resource availability were limited across CCOP organizations early on, although they improved in one CCOP organization

  5. Ethical and social implications of microdosing clinical trial (3). Radiological protection of human subjects in research

    International Nuclear Information System (INIS)

    Kurihara, Chieko

    2008-01-01

    Internal irradiation of human subjects in research is discussed. Radiological protection of human subjects in medical research in a framework of radiation protection is surveyed from a viewpoint of general life-ethics and research-ethics. A workshop 'On the internal irradiation of human subjects' to summarize special and systematic knowledge was organized by Research Center for Radiation Protection, National Institute of Radiological Sciences in the beginning of 2008. Activities of this workshop are introduced. Discussion covers also (1) Research ethics and radiation protection, (2) Fundamentals and applications of risk-benefit assessment, (3) Human subjects risk assessment in ICRP recommendation, (4) Mechanism of human subjects internal irradiation assessment, and (5) Present status and future prospects in Japan. (K.Y.)

  6. The Educational Function of an Astronomy Research Experience for Undergraduates Program as Described by Female Participants

    Science.gov (United States)

    Slater, Stephanie

    2010-01-01

    The long-running REU-program is tacitly intended to increase retention and provide "an important educational experience" for undergraduates, particularly women, minorities and underrepresented groups. This longitudinal, two-stage study was designed to explore the ways in which the REU acted as an educational experience for 51 women in the field of astronomy. Stage-1 consisted of an ex post facto analysis of data collected over 8 years, including multiple interviews with each participant during their REU, annual open-ended alumni surveys, faculty interviews, and extensive field notes. Four themes emerged, related to developing understandings of the nature of professional scientific work, the scientific process, the culture of academia, and an understanding of the "self." Analysis provided an initial theory that was used to design the Stage-2 interview protocol. In Stage-2, over 10 hours of interviews were conducted with 8 participants selected for their potential to disconfirm the initial theory. Results indicate that the REU provided a limited impact in terms of participants’ knowledge of professional astronomy as a largely computer-based endeavor. The REU did not provide a substantive educational experience related to the nature of scientific work, the scientific process, the culture of academia, participants' conceptions about themselves as situated in science, or other aspects of the "self,” were limited. Instead, the data suggests that these women began the REU with pre-existing and remarkably strong conceptions in these areas, and that the REU did not functional to alter those states. These conceptions were frequently associated with other mentors/scientist interactions, from middle school into the undergraduate years. Instructors and family members also served as crucial forces in shaping highly developed, stable science identities. Sustained relationships with mentors were particularly transformational. These findings motivate an ongoing research agenda

  7. WASP (Write a Scientific Paper): Data protection, a guide for health researchers.

    Science.gov (United States)

    Grech, Victor; Agius-Muscat, Hugo

    2018-05-02

    Data protection (DP) protects crucial and humane fundamentals - the respect of human rights, particularly protecting aspects of privacy and confidentiality for living and identifiable persons. DP is enshrined in legislation, and this paper will outline the duties of potential data controllers (researchers) when applying for access to data, when processing said data, and what to do with it at the end of the study. Copyright © 2018 Elsevier B.V. All rights reserved.

  8. Strengthening the educational value of undergraduate participation in research as part of a psychology department subject pool.

    Science.gov (United States)

    Moyer, Anne; Franklin, Nancy

    2011-03-01

    Participating in research must be an educational experience for students in order to ethically justify its inclusion as a requirement in college courses. Introductory Psychology students (N = 280) completed a written class assignment describing their research participation as a means to enhance this educational mission. Approximately half of students spontaneously mentioned something positive about the significance of the research or what they learned, with the remainder providing neutral, mixed, or negative comments. Students could articulate clearly and knowledgeably about the research in which they had participated. Such an assignment is an effective means to foster an understanding of the science of psychology.

  9. Constructing a Local Potential Participant Registry to Improve Alzheimer's Disease Clinical Research Recruitment.

    Science.gov (United States)

    Grill, Joshua D; Hoang, Dan; Gillen, Daniel L; Cox, Chelsea G; Gombosev, Adrijana; Klein, Kirsten; O'Leary, Steve; Witbracht, Megan; Pierce, Aimee

    2018-01-01

    Potential participant registries are tools to address the challenge of slow recruitment to clinical research. In particular, registries may aid recruitment to secondary prevention clinical trials for Alzheimer's disease (AD), which enroll cognitively normal older individuals meeting specific genetic or biomarker criteria. Evidence of registry effectiveness is sparse, as is guidance on optimal designs or methods of conduct. We report our experiences of developing a novel local potential participant registry that implemented online enrollment and data collection. In the first year of operation, 957 individuals submitted email addresses to the registry, of whom 592 self-reported demographic, family history, and medical data. In addition, registrants provided information related to their interest and willingness to be contacted about studies. Local earned media and community education were the most effective methods of recruitment into the registry. Seventy-six (26%) of 298 registrants contacted about studies in the first year enrolled in those studies. One hundred twenty-nine registrants were invited to enroll in a preclinical AD trial, of whom 25 (18%) screened and 6 were randomized. These results indicate that registries can aid recruitment and provide needed guidance for investigators initiating new local registries.

  10. Research on electricity market operation mechanism and its benefit of demand side participation

    Science.gov (United States)

    Han, Shuai; Yan, Xu; Qin, Li-juan; Lin, Xi-qiao; Zeng, Bo

    2017-08-01

    Demand response plays an important role in maintaining the economic stability of the system, and has the characteristics of high efficiency, low cost, fast response, good environmental benefits and so on. Demand side resource is an important part of electricity market. The research of demand side resources in our country is still in the initial stage, but the opening of the electricity sales side provides a broad prospect for the development of electricity market. This paper summarizes the main types of demand side resources in our country, analyzes the economic principle of demand response from the micro perspective, puts forward some suggestions on the operation mechanism of China’s demand side resources participating in the electricity market under the condition of electricity sales side opening, analyzes the current situation of pricing in the electricity wholesale market and sets up the pricing strategy of the centralized wholesale market with the demand side power supply participating in quotation, which makes the social and economic benefits reach the maximum.

  11. RESSIGNIFICANDO THE TEACHING PRACTICE FOR YOUNG AND ADULTS EDUCATION BASED ON PARTICIPANT RESEARCH

    Directory of Open Access Journals (Sweden)

    Marcio Hoff

    2008-03-01

    Full Text Available The objective of this document is make a brief report of the evolution of Young and Adults Education (EJA in the historical-educational context of Brazil, over all from century XX till the 90 decade, with the writing of the new LDBEN- Guidelines and Bases National Education Law and the guidelines concerning to EJA, focusing the situation of this modality of education post-LDBEN, specially in relation to teachers’s pedagogical formation. The text brings up the problematic of the necessity of permanent spaces of teachers continued formation of this modality and tells a practical experience of formation accomplished with teachers of the Education State System in the cities of Cidreira, Capivari and Palmares do Sul, of Rio Grande do Sul State. Approaching the participant research from the classroom, the meetings have happened from July to December, 2006, with UNESCO and Education State Secretaryship support according to UNISC – Universidade de Santa Cruz do Sul.

  12. Marine radioecology: some aspects of research applied to radioecological protection

    International Nuclear Information System (INIS)

    Ancellin, J.

    1977-01-01

    Radioecological studies involve more specialy researches on behavior of radionuclides in the different components of the oceanic environment: water, sediments, organisms. Two main vectors of contamination are to be considered concerning organisms: water and food. Regarding the last one a decreasing of concentration factors, rather an increasing, is observed in relation with the elevation of trophic levels. Actual data on radionuclides distribution in the marine environment can be mainly derived from in situ observations [fr

  13. From privacy to data protection in the EU : Implications for big data health research

    NARCIS (Netherlands)

    Mostert, Menno; Bredenoord, Annelien L.; Van Der Slootb, Bart; Van Delden, Johannes J.M.

    2018-01-01

    The right to privacy has usually been considered as the most prominent fundamental right to protect in data-intensive (Big Data) health research. Within the European Union (EU), however, the right to data protection is gaining relevance as a separate fundamental right that should in particular be

  14. Cybersecurity Protection: Design Science Research toward an Intercloud Transparent Bridge Architecture (ITCOBRA)

    Science.gov (United States)

    Wilson, Joe M.

    2013-01-01

    This dissertation uses design science research and engineering to develop a cloud-based simulator for modeling next-generation cybersecurity protection frameworks in the United States. The claim is made that an agile and neutral framework extending throughout the cyber-threat plane is needed for critical infrastructure protection (CIP). This…

  15. “I Just Don't Think There's any other Image that Tells the Story like [This] Picture Does”: Researcher and Participant Reflections on the Use of Participant-Employed Photography in Social Research

    Directory of Open Access Journals (Sweden)

    Meridith Burles PhD

    2014-02-01

    Full Text Available The incorporation of visual forms of expression has become common in qualitative research over the past two decades, with participant-employed photography being most prevalent. Visual methods such as photovoice have been used in community-based studies and with individuals to explore their lived experiences, particularly because of their participatory nature. Despite widespread support for visual approaches in existing research, there has been insufficient attention paid to how photography can enhance understanding of the phenomenon under study. Additionally, the existing literature is somewhat bereft of discussion of what individuals think about their participation in studies that incorporate participant-employed photography, or researchers' perspectives of carrying out this type of research. In this article, we describe a photovoice study carried out with young adult women affected by serious illness and provide examples of participants' photographs to illustrate how participant-employed photography can enhance the depth of research data. Specifically, the examples highlight how the photographs enriched participants' verbal descriptions of their lived experiences, which generated a better understanding of their personal embodied realities. We also discuss the young adult women's inclusion of previously taken photographs and reflections on their participation in the study. Finally, we examine the need to consider the intended audience of photographs, and specific ethical and methodological considerations for researchers contemplating the incorporation of participant-employed photography. In doing so, we provide insight into the advantages and challenges of photo-methods, which can inform other researchers contemplating the incorporation of participant-employed photography into social research.

  16. Nuclear plant-aging research on reactor protection systems

    International Nuclear Information System (INIS)

    Meyer, L.C.

    1988-01-01

    This report presents the rsults of a review of the Reactor Trip System (RTS) and the Engineered Safety Feature Actuating System (ESFAS) operating experiences reported in Licensee Event Reports (LER)s, the Nuclear Power Experience data base, Nuclear Plant Reliability Data System, and plant maintenance records. Our purpose is to evaluate the potential significance of aging, including cycling, trips, and testing as contributors to degradation of the RTS and ESFAS. Tables are presented that show the percentage of events for RTS and ESFAS classified by cause, components, and subcomponents for each of the Nuclear Steam Supply System vendors. A representative Babcock and Wilcox plant was selected for detailed study. The US Nuclear Regulatory Commission's Nuclear Plant Aging Research guidelines were followed in performing the detailed study that identified materials susceptible to aging, stressors, environmental factors, and failure modes for the RTS and ESFAS as generic instrumentation and control systems. Functional indicators of degradation are listed, testing requirements evaluated, and regulatory issues discussed

  17. Impact of individual clinical outcomes on trial participants' perspectives on enrollment in emergency research without consent.

    Science.gov (United States)

    Whitesides, Louisa W; Baren, Jill M; Biros, Michelle H; Fleischman, Ross J; Govindarajan, Prasanthi R; Jones, Elizabeth B; Pancioli, Arthur M; Pentz, Rebecca D; Scicluna, Victoria M; Wright, David W; Dickert, Neal W

    2017-04-01

    Evidence suggests that patients are generally accepting of their enrollment in trials for emergency care conducted under exception from informed consent. It is unknown whether individuals with more severe initial injuries or worse clinical outcomes have different perspectives. Determining whether these differences exist may help to structure post-enrollment interactions. Primary clinical data from the Progesterone for the Treatment of Traumatic Brain Injury trial were matched to interview data from the Patients' Experiences in Emergency Research-Progesterone for the Treatment of Traumatic Brain Injury study. Answers to three key questions from Patients' Experiences in Emergency Research-Progesterone for the Treatment of Traumatic Brain Injury study were analyzed in the context of enrolled patients' initial injury severity (initial Glasgow Coma Scale and Injury Severity Score) and principal clinical outcomes (Extended Glasgow Outcome Scale and Extended Glasgow Outcome Scale relative to initial injury severity). The three key questions from Patients' Experiences in Emergency Research-Progesterone for the Treatment of Traumatic Brain Injury study addressed participants' general attitude toward inclusion in the Progesterone for the Treatment of Traumatic Brain Injury trial (general trial inclusion), their specific attitude toward being included in Progesterone for the Treatment of Traumatic Brain Injury trial under the exception from informed consent (personal exception from informed consent enrollment), and their attitude toward the use of exception from informed consent in the Progesterone for the Treatment of Traumatic Brain Injury trial in general (general exception from informed consent enrollment). Qualitative analysis of interview transcripts was performed to provide contextualization and to determine the extent to which respondents framed their attitudes in terms of clinical experience. Clinical data from Progesterone for the Treatment of Traumatic Brain Injury

  18. The Vulnerabilities of Orphaned Children Participating in Research: A Critical Review and Factors for Consideration for Participation in Biomedical and Behavioral Research

    Science.gov (United States)

    Thompson, Rachel T.; Meslin, Eric M.; Braitstein, Paula K. A.; Nyandiko, Winstone M.; Ayaya, Samuel O.; Vreeman, Rachel C.

    2013-01-01

    Orphans are a subpopulation with a unique set of additional vulnerabilities. Increasing focus on children’s rights, pediatric global health, and pediatric research makes it imperative to recognize and address unique vulnerabilities of orphaned children. This paper describes the unique vulnerabilities of the orphaned pediatric population and offers a structured set of factors that require consideration when including orphans in biomedical research. Pediatric orphans are particularly vulnerable due to decreased economic resources, psychosocial instability, increased risk of abuse, and delayed/decreased access to healthcare. These vulnerabilities are significant. By carefully considering each issue in a population in a culturally specific and study-specific manner, researchers can make valuable contributions to the overall health and well-being of this uniquely vulnerable population. PMID:23086048

  19. Talking to the people that really matter about their participation in pandemic clinical research: A qualitative study in four European countries.

    Science.gov (United States)

    Gobat, Nina H; Gal, Micaela; Butler, Christopher C; Webb, Steve A R; Francis, Nicholas A; Stanton, Helen; Anthierens, Sibyl; Bastiaens, Hilde; Godycki-Ćwirko, Maciek; Kowalczyk, Anna; Pons-Vigués, Mariona; Pujol-Ribera, Enriqueta; Berenguera, Anna; Watkins, Angela; Sukumar, Prasanth; Moore, Ronald G; Hood, Kerenza; Nichol, Alistair

    2018-02-01

    Pandemics of new and emerging infectious diseases are unpredictable, recurrent events that rapidly threaten global health and security. We aimed to identify public views regarding provision of information and consent to participate in primary and critical care clinical research during a future influenza-like illness pandemic. Descriptive-interpretive qualitative study, using focus groups (n = 10) and semi-structured interviews (n = 16), with 80 members of the public (>18 years) in Belgium, Spain, Poland and the UK. Local qualitative researchers followed a scenario-based topic guide to collect data. Data were transcribed verbatim, translated into English and subject to framework analysis. Public understandings of pandemics were shaped by personal factors (illness during the previous H1N1 pandemic, experience of life-threatening illness) and social factors (historical references, media, public health information). Informants appreciated safeguards provided by ethically robust research procedures, but current enrolment procedures were seen as a barrier. They proposed simplified enrolment processes for higher risk research and consent waiver for certain types of low-risk research. Decision making about research participation was influenced by contextual, research and personal factors. Informants generally either carefully weighed up various approaches to research participation or responded instinctively. They supported the principle of using routinely collected, anonymized clinical biological samples for research without explicit consent, but regarded this as less acceptable if researchers were motivated primarily by commercial gain. This bottom-up approach to ascertaining public views on pandemic clinical research has identified support for more proportionate research protection procedures for publically funded, low-risk studies. © 2017 The Authors Health Expectations Published by John Wiley & Sons Ltd.

  20. Participants' Reactions to and Suggestions for Conducting Intimate Partner Violence Research: A Study of Rural Young Adults.

    Science.gov (United States)

    Edwards, Katie M; Greaney, Kayleigh; Palmer, Kelly M

    2016-01-01

    To document rural young adults' reasons for emotional reactions to participating in intimate partner violence (IPV) research as well as to hear young adults' perspectives on how to most effectively conduct comprehensive IPV research in their rural communities. The data presented in this paper draw from 2 studies (ie, an online survey study and an in-person or telephone interview study) that included the same 16 US rural counties in New England and Appalachia. Participants, 47% of whom were in both studies, were young (age range 18-24), white (92%-94%), heterosexual (89%-90%), female (62%-68%), and mostly low to middle income. Nine percent of participants reported they were upset by the questions due to personal experiences with IPV or for other reasons not related to personal IPV experiences. Forty percent of participants reported they personally benefited from participating in the study, and they provided various reasons for this benefit. Regarding suggestions for conducting IPV research with rural young adults, participants believed that both online recruitment and online data collection methods were the best ways to engage young adults, although many participants suggested that more than 1 modality was ideal, which underscores the need for multimethod approaches when conducting research with rural young adults. These findings are reassuring to those committed to conducting research on sensitive topics with rural populations and also shed light on best practices for conducting this type of research from the voices of rural young adults themselves. © 2015 National Rural Health Association.

  1. Investigating the Experiences of Childhood Cancer Patients and Parents Participating in Optional Nontherapeutic Clinical Research Studies in the UK.

    Science.gov (United States)

    Errington, Julie; Malik, Ghada; Evans, Julie; Baston, Jenny; Parry, Annie; Price, Lisa; Johnstone, Hina; Peters, Selena; Oram, Victoria; Howe, Karen; Whiteley, Emma; Tunnacliffe, Jane; Veal, Gareth J

    2016-07-01

    While the majority of childhood cancer clinical trials are treatment related, additional optional research investigations may be carried out that do not directly impact on treatment. It is essential that these studies are conducted ethically and that the experiences of families participating in these studies are as positive as possible. A questionnaire study was carried out to investigate the key factors that influence why families choose to participate in optional nontherapeutic research studies, the level of understanding of the trials involved, and the experiences of participation. A total of 100 participants from six UK centers were studied; 77 parents, 10 patients >16 years, and 13 patients aged 8-15 years. Ninety-seven percent of parents and 90% of patients felt that information provided prior to study consent was of the right length, with 52% of parents and 65% of patients fully understanding the information provided. Seventy-four percent of parents participated in research studies in order to "do something important", while 74% of patients participated "to help medical staff". Encouragingly, <5% of participants felt that their clinical care would be negatively affected if they did not participate. Positive aspects of participation included a perception of increased attention from medical staff. Negative aspects included spending longer periods in hospital and the requirement for additional blood samples. Ninety-six percent of parents and 87% of patients would participate in future studies. The study provides an insight into the views of childhood cancer patients and their parents participating in nontherapeutic clinical research studies. Overwhelmingly, the findings suggest that participation is seen as a positive experience. © 2016 The Authors. Pediatric Blood & Cancer, published by Wiley Periodicals, Inc.

  2. Effects of Student Participation in Decision Making at School. A Systematic Review and Synthesis of Empirical Research

    Science.gov (United States)

    Mager, Ursula; Nowak, Peter

    2012-01-01

    This article reviews empirical research on the effects of student participation in school decision-making processes. Out of 3102 searched citations, a total of 32 publications met the inclusion criteria. The qualitative analyses employed in this review yielded a typology of student participation, a categorisation of the diverse effects of student…

  3. An Analysis of Female Lecturers' Participation in Civil Engineering Research and Development Activities at One Polytechnic in Zimbabwe

    Science.gov (United States)

    Chikuvadze, Pinias; Matswetu, Vimbai Sharon; Mugijima, Samuel

    2015-01-01

    This study sought to explore female lecturers' participation in civil engineering research and development activities at one polytechnic in Zimbabwe. Case study design was chosen for this study to make predi