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Sample records for schizophrenia research ethics

  1. Ethics of the early intervention in the treatment of schizophrenia.

    Science.gov (United States)

    Filaković, Pavo; Degmecić, Dunja; Koić, Elvira; Benić, Domagoj

    2007-09-01

    When second generation antipsychotics were introduced in the mid 1990-s they offered the possibility of early psychopharmacological interventions in the treatment of schizophrenia. The idea applying antipsychotics in the prodromal phase of schizophrenia today is an realistic option. However ethical dilemmas about offering antipsychotics to the adolescents with at risk mental states, of whom only a few are real prodromes of schizophrenia remain for clinicians. In the literature about the ethics of the early interventions in psychiatry there are still many ethical questions which call for caution because of the low predictive value of at risk mental states, of which only 40% turn out to be a real prodrome of schizophrenia. These ethical questions can be addressed in three categories: - how to best identify who should receive early pharmacological intervention? - what this intervention should consist of? - how to evaluate treatment efficacy in the absence of illness base rates in the adolescents with a real prodrome of schizophrenia? Besides, arguing against the concept of early psychopharmacological interventions in the adolescent population are the fact of the unknown effect of antipsychotics on the developing brain as well as negative effects of stigma on those adolescents who receive them. The authors in the article analyse these ethical questions and take the side of those clinicians who think that caution and careful ethical judgment are needed before the prescribing of antipsychotics to adolescents with at risk mental states.

  2. 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.

  3. 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.

  4. Ethical and methodological issues in qualitative studies involving people with severe and persistent mental illness such as schizophrenia and other psychotic conditions: a critical review.

    Science.gov (United States)

    Carlsson, Ing-Marie; Blomqvist, Marjut; Jormfeldt, Henrika

    2017-01-01

    Undertaking research studies in the field of mental health is essential in mental health nursing. Qualitative research methodologies enable human experiences to become visible and recognize the importance of lived experiences. This paper argues that involving people with schizophrenia in research is critical to promote their health and well-being. The quality of qualitative research needs scrutinizing according to methodological issues such as trustworthiness and ethical standards that are a fundamental part of qualitative research and nursing curricula. The aim of this study was to critically review recent qualitative studies involving people with severe and persistent mental illness such as schizophrenia and other psychotic conditions, regarding descriptions of ethical and methodological issues in data collection and analysis. A search for relevant papers was conducted in three electronic databases, in December 2016. Fifteen qualitative interview studies were included and reviewed regarding methodological issues related to ethics, and data collection and analysis. The results revealed insufficient descriptions of methodology regarding ethical considerations and issues related to recruitment and sampling in qualitative interview studies with individuals with severe mental illness, putting trustworthiness at risk despite detailed descriptions of data analysis. Knowledge from the perspective of individuals with their own experience of mental illness is essential. Issues regarding sampling and trustworthiness in qualitative studies involving people with severe mental illness are vital to counteract the stigmatization of mental illness.

  5. A review of schizophrenia research in malaysia.

    Science.gov (United States)

    Chee, K Y; Salina, A A

    2014-08-01

    Research in schizophrenia has advanced tremendously. One hundred and seventy five articles related to Schizophrenia were found from a search through a database dedicated to indexing all original data relevant to medicine published in Malaysia between the years 2000-2013. This project aims to examine published research articles, in local and international journals in order to provide a glimpse of the research interest in Malaysia with regards to schizophrenia. Single case study, case series report, reviews and registry reports were not included in this review. Medication trial, unless it concerned a wider scope of psychopharmacology was also excluded from this review. A total of 105 articles were included in this review. Despite numerous genetics studies conducted and published, a definitive conclusion on the aetiology or mechanism underlying schizophrenia remains elusive. The National Mental Health - Schizophrenia Registry (NMHR) proved to be an important platform for many studies and publications. Studies stemmed from NMHR have provided significant insight into the baseline characteristic of patients with schizophrenia, pathway to care, and outcomes of the illness. International and regional collaborations have also encouraged important work involving stigma and discrimination in schizophrenia. Ministry of Health's hospitals (MOH) are the main research sites in the country with regards to schizophrenia research. Numbers of schizophrenia research are still low in relation to the number of universities and hospitals in the country. Some of the weaknesses include duplication of studies, over-emphasising clinical trials and ignoring basic clinical research, and the lack of publications in international and regional journals.

  6. Research ethics for clinical researchers.

    Science.gov (United States)

    Harnett, John D; Neuman, Richard

    2015-01-01

    This chapter describes the history of the development of modern research ethics. The governance of research ethics is discussed and varies according to geographical location. However, the guidelines used for research ethics review are very similar across a wide variety of jurisdictions. The paramount importance of protecting the privacy and confidentiality of research participants is discussed at length. Particular emphasis is placed on the process of informed consent, and step-by-step practical guidelines are described. The issue of research in vulnerable populations is touched upon and guidelines are provided. Practical advice is provided for researchers to guide their interactions with research ethics boards. Issues related to scientific misconduct and research fraud are not dealt with in this paper.

  7. Ethical aspects in tissue research: thematic analysis of ethical statements to the research ethics committee

    Science.gov (United States)

    2012-01-01

    Background Many studies have been published about ethics committees and the clarifications requested about the submitted applications. In Finland, ethics committees require a separate statement on ethical aspects of the research in applications to the ethics committee. However, little is known about how researchers consider the ethical aspects of their own studies. Methods The data were collected from all the applications received by the official regional ethics committee in the Hospital District of Northern Savo during 2004–2009 (n = 688). These included a total of 56 studies involving research on tissue other than blood. The statements by the researchers about the ethics about their own research in these applications were analyzed by thematic content analysis under the following themes: recruitment, informed consent, risks and benefits, confidentiality and societal meaning. Results The researchers tended to describe recruitment and informed consent process very briefly. Usually these descriptions simply stated who the recruiter was and that written consent would be required. There was little information provided on the recruitment situation and on how the study recruiters would be informed. Although most of the studies were clinical, the possibility was hardly ever discussed that patients could fail to distinguish between care and research. Conclusion The written guidelines, available on the webpages of the ethics committee, do not seem to be enough to help researchers achieve this goal. In addition to detailed guidelines for researchers, investigators need to be taught to appreciate the ethical aspects in their own studies. PMID:22873761

  8. Ethics in research.

    Science.gov (United States)

    Bevan, Joan C

    2007-04-01

    This review will examine research ethics in the context of globalization of clinical trials and recent rapid developments in bioscience. It will focus on international ethical guidelines and the functions of research ethics review boards in research governance. Consent issues in genetic research, which must comply with privacy laws by protecting confidentiality and privacy of personal health data, will be discussed. There has been a rapid expansion of genomic and proteonomic research and biotechnology in the last decade. International ethical guidelines have been updated and the bioscience industry has developed ethics policies. At the same time, problems in academic anesthesia in the US and UK have been identified, leading to recommendations to train physician-scientists in anesthesia to stimulate research activity in the future. Anesthesiologists are joining interdisciplinary research teams and the concept of evidence-based translational research is emerging. Anesthesiologists are moving towards participation in interdisciplinary research teams. They are well placed to speed the translation of research discovery into clinical practice and provide evidence-based perioperative care. This review provides the ethical framework that anesthesiologists will need to meet the challenges of this changing pattern of practice.

  9. Is mandatory research ethics reviewing ethical?

    Science.gov (United States)

    Dyck, Murray; Allen, Gary

    2013-08-01

    Review boards responsible for vetting the ethical conduct of research have been criticised for their costliness, unreliability and inappropriate standards when evaluating some non-medical research, but the basic value of mandatory ethical review has not been questioned. When the standards that review boards use to evaluate research proposals are applied to review board practices, it is clear that review boards do not respect researchers or each other, lack merit and integrity, are not just and are not beneficent. The few benefits of mandatory ethical review come at a much greater, but mainly hidden, social cost. It is time that responsibility for the ethical conduct of research is clearly transferred to researchers, except possibly in that small proportion of cases where prospective research participants may be so intrinsically vulnerable that their well-being may need to be overseen.

  10. Visualization analysis of author collaborations in schizophrenia research.

    Science.gov (United States)

    Wu, Ying; Duan, Zhiguang

    2015-02-19

    Schizophrenia is a serious mental illness that levies a heavy medical toll and cost burden throughout the world. Scientific collaborations are necessary for progress in psychiatric research. However, there have been few publications on scientific collaborations in schizophrenia. The aim of this study was to investigate the extent of author collaborations in schizophrenia research. This study used 58,107 records on schizophrenia from 2003 to 2012 which were downloaded from Science Citation Index Expanded (SCI Expanded) via Web of Science. CiteSpace III, an information visualization and analysis software, was used to make a visual analysis. Collaborative author networks within the field of schizophrenia were determined using published documents. We found that external author collaboration networks were more scattered while potential author collaboration networks were more compact. Results from hierarchical clustering analysis showed that the main collaborative field was genetic research in schizophrenia. Based on the results, authors belonging to different institutions and in different countries should be encouraged to collaborate in schizophrenia research. This will help researchers focus their studies on key issues, and allow each other to offer reasonable suggestions for making polices and providing scientific evidence to effectively diagnose, prevent, and cure schizophrenia.

  11. [Schizophrenia and informed consent to research].

    Science.gov (United States)

    Fovet, T; Amad, A; Thomas, P; Jardri, R

    2015-10-01

    Informed consent to research remains a complex issue, while sometimes staying difficult to obtain, even in the general population. This problem may be maximized with patients suffering from schizophrenia. This paper summarizes available data in the literature about informed consent for research involving patients suffering from schizophrenia. Medline and Google Scholar searches were conducted using the following MESH terms: schizophrenia, informed consent and research. Studies using dedicated standardized scales (e.g. MacCAT-CR) revealed a decrease in the capacity to consent of patients with schizophrenia when compared with healthy individuals. Keeping in mind that schizophrenia is an heterogeneous disorder, patients with the lowest insight as well as those with the most severe cognitive symptoms appeared more impaired in their capacity to consent. Such a poor capacity to understand and consent to trials was shown linked with alterations in decision-making. For these specific patients, interventions may be set up to increase their capacity to consent. Various strategies were proposed: enhanced consent forms, extended discussion, test/feedback method or multimedia interventions. Among them, interventions relying on communication and the growing field of information technologies (e.g. web-based tools) seem promising. Finally, associations grouping families and patients (like the French Association UNAFAM) may facilitate the involvement of patients in research programs with safer conditions. Patients suffering from schizophrenia appear able to consent to research programs when suitable interventions are proposed. Further studies are now needed to optimize and individualize such interventions. Copyright © 2014 L’Encéphale, Paris. Published by Elsevier Masson SAS. All rights reserved.

  12. Demonstrating Patterns in the Views Of Stakeholders Regarding Ethically-Salient Issues in Clinical Research: A Novel Use of Graphical Models in Empirical Ethics Inquiry.

    Science.gov (United States)

    Kim, Jane Paik; Roberts, Laura Weiss

    Empirical ethics inquiry works from the notion that stakeholder perspectives are necessary for gauging the ethical acceptability of human studies and assuring that research aligns with societal expectations. Although common, studies involving different populations often entail comparisons of trends that problematize the interpretation of results. Using graphical model selection - a technique aimed at transcending limitations of conventional methods - this report presents data on the ethics of clinical research with two objectives: (1) to display the patterns of views held by ill and healthy individuals in clinical research as a test of the study's original hypothesis and (2) to introduce graphical model selection as a key analytic tool for ethics research. In this IRB-approved, NIH-funded project, data were collected from 60 mentally ill and 43 physically ill clinical research protocol volunteers, 47 healthy protocol-consented participants, and 29 healthy individuals without research protocol experience. Respondents were queried on the ethical acceptability of research involving people with mental and physical illness (i.e., cancer, HIV, depression, schizophrenia, and post-traumatic stress disorder) and non-illness related sources of vulnerability (e.g., age, class, gender, ethnicity). Using a statistical algorithm, we selected graphical models to display interrelationships among responses to questions. Both mentally and physically ill protocol volunteers revealed a high degree of connectivity among ethically-salient perspectives. Healthy participants, irrespective of research protocol experience, revealed patterns of views that were not highly connected. Between ill and healthy protocol participants, the pattern of views is vastly different. Experience with illness was tied to dense connectivity, whereas healthy individuals expressed views with sparse connections. In offering a nuanced perspective on the interrelation of ethically relevant responses, graphical

  13. Research Ethics

    Science.gov (United States)

    Dooly, Melinda; Moore, Emilee; Vallejo, Claudia

    2017-01-01

    Qualitative research, especially studies in educational contexts, often brings up questions of ethics because the study design involves human subjects, some of whom are under age (e.g. data collected in primary education classrooms). It is not always easy for young researchers to anticipate where ethical issues might emerge while designing their…

  14. Visualization analysis of author collaborations in schizophrenia research

    OpenAIRE

    Wu, Ying; Duan, Zhiguang

    2015-01-01

    Background Schizophrenia is a serious mental illness that levies a heavy medical toll and cost burden throughout the world. Scientific collaborations are necessary for progress in psychiatric research. However, there have been few publications on scientific collaborations in schizophrenia. The aim of this study was to investigate the extent of author collaborations in schizophrenia research. Methods This study used 58,107 records on schizophrenia from 2003 to 2012 which were downloaded from S...

  15. Researchers Find a Mechanism for Schizophrenia

    Science.gov (United States)

    ... issue Health Capsule Researchers Find a Mechanism for Schizophrenia En español Send us your comments Scientists uncovered a mechanism behind genetic variations previously linked to schizophrenia. The findings may lead to new clinical approaches. ...

  16. Ethics, Ethical Human Research and Human Research Ethics Committees

    Science.gov (United States)

    Lindorff, Margaret

    2010-01-01

    Non-medical research involves the same issues of justice, beneficence, and respect for persons that apply to non-medical research. It also may involve risk of harm to participants, and conflicts of interest for researchers. It is therefore not possible to argue that such research should be exempt from ethical review. This paper argues that…

  17. Ethics and marketing research

    Directory of Open Access Journals (Sweden)

    Salai Suzana

    2006-01-01

    Full Text Available The ethics is the inner law of the individual. Its application is controlled and sacked by the self-awareness and the surrounding (by ethical codecs. The self-awareness is the inner law produced by everyday life, and is therefore changeable and adaptable to the outer reality. The ethics is a common field of marketing research, within the processes of ethical dilemmas and the marketing research process itself (identified target segments: the public the consumer, the subject ordering marketing research and marketing researchers.

  18. Environmental cognitive remediation in schizophrenia: ethical implications of "smart home" technology.

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    Stip, Emmanuel; Rialle, Vincent

    2005-04-01

    In light of the advent of new technologies, we proposed to reexamine certain challenges posed by cognitive remediation and social reintegration (that is, deinstitutionalization) of patients with severe and persistent mental disorders. We reviewed literature on cognition, remediation, smart homes, as well as on objects and utilities, using medical and computer science electronic library and Internet searches. These technologies provide solutions for disabled persons with respect to care delivery, workload reduction, and socialization. Examples include home support, video conferencing, remote monitoring of medical parameters through sensors, teledetection of critical situations (for example, a fall or malaise), measures of daily living activities, and help with tasks of daily living. One of the key concepts unifying all these technologies is the health-smart home. We present the notion of the health-smart home in general and then examine it more specifically in relation to schizophrenia. Management of people with schizophrenia with cognitive deficits who are being rehabilitated in the community can be improved with the use of technology; however, such technology has ethical ramifications.

  19. Balancing Ethics and Quality in Educational Research--The Ethical Matrix Method

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    Tangen, Reidun

    2014-01-01

    This paper addresses ethical issues in educational research with a focus on the interplay between research ethics and both internal and external quality of research. Research ethics is divided into three domains: (1) ethics "within" the research community; (2) ethics concerning relationships with "individuals and groups directly…

  20. Ethics in Research

    Directory of Open Access Journals (Sweden)

    Mark Williams

    2001-05-01

    Full Text Available In order to reflect on some ethical improprieties which I had committed during the data collection phase of an information systems research study, I conducted an heuristic and psychologically-oriented self-study. As part of this heuristic reflection, I engaged in a number of self dialogues in the form of a conversation between various characters. Reported in this paper is one of these dialogues, concerning broad issues of ethics and research and discussing the notion of wisdom, maturity, meaning, and virtue. Ethical considerations are always of primary importance, and I would assert that this is even more so when considering research investigating and using new media, such as the world wide web, in which acceptable ethical practices have yet to be established and consolidated.

  1. Ethical Evaluation of Mental Health Social Research: Agreement Between Researchers and Ethics Committees.

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    Mondragón Barrios, Liliana; Guarneros García, Tonatiuh; Jiménez Tapia, Alberto

    2017-07-01

    The objective of this article is to compare various ethical issues considered by social scientists and research ethics committees in the evaluation of mental health social research protocols. We contacted 47 social scientists and 10 members of ethics committees in Mexico with two electronic national surveys that requested information from both groups related to the application of ethical principles in mental health social research. The results showed no significant difference between these groups in the value placed on the ethical issues explored. Based on this finding, we make proposals to strengthen the collaboration between the two groups.

  2. Research Ethics: Reforming Postgraduate Formation

    Science.gov (United States)

    Vallance, Roger J.

    2005-01-01

    Research ethics is not only a matter of doing no harm, or even abiding by the guidelines of the Ethics Review Board of the institution. While these matters are important and legal requirements, there is much more at stake in discussions of research ethics. Research ethics establish the foundation upon which research rests. Taking the social…

  3. Ethics approval: responsibilities of journal editors, authors and research ethics committees.

    Science.gov (United States)

    Bain, Luchuo Engelbert

    2017-01-01

    Meaningful progress of medicine depends on research that must ultimately involve human subjects. Obtaining ethical approval therefore, especially in medical sciences, should be a moral reflex for researchers. This unfortunately is not the case, with numerous researchers bypassing the ethics approval procedure, or simply unaware of its importance. Good research involves risks taken by research participants and uses tax payers' money in the process. These mandates the research endeavor to aim at attaining the highest degree of respect for the sacrifices made by others for science. Most researchers mistake scientific clearance or approval, for ethics approval. For a study to be ethical sound, it must be scientifically sound. This is only one of the activities carried out during protocol review. It is not uncommon for sensitive ethical concerns, especially in the social sciences to be overlooked and considered not to be accompanied by any serious risks for the research participants.The researcher has the responsibility of systematically consulting the competent ethics committee for advice and consequent approvals or ethical waivers. Journal editors and reviewers have the duty to systematically evaluate the ethical soundness of manuscripts submitted for review. Capacity building in research ethics and institutional support for Research Ethics Committees to speed up protocol review could reduce the incentive of carrying out research in human subjects without ethics approvals. It is hypocritical and idle to continue to expect optimal reviews on time and of good quality, from ethics committees functioning purely on altruistic grounds. Capacity building for researchers in research ethics, and institutional reforms and support for Research Ethics Committees appear not to have received the attention they truly deserve.

  4. Introduction: international research ethics education.

    Science.gov (United States)

    Millum, Joseph; Sina, Barbara

    2014-04-01

    NIH's Fogarty International Center has provided grants for the development of training programs in international research ethics for low- and middle-income (LMIC) professionals since 2000. Drawing on 12 years of research ethics training experience, a group of Fogarty grantees, trainees, and other ethics experts sought to map the current capacity and need for research ethics in LMICs, analyze the lessons learned about teaching bioethics, and chart a way forward for research ethics training in a rapidly changing health research landscape. This collection of papers is the result.

  5. Ethics and psychological research

    DEFF Research Database (Denmark)

    Søndergaard, Dorte Marie

    Human subjects and social relations are crucial in research psychologists’ ethical considerations. Lists of ethical criteria - including how to anonymize data, avoid causing harm, handle asymmetries – are pivotal. A situated ethics inspired by new materialism and poststructuralism would, however......, elaborate these focuses to include social orders, discursive power, and more comprehensive material-discursive apparatuses. I will draw on concepts developed by Barad, Foucault and Butler to discuss how ethics can be understood as an intra-acting, emergent element of the research apparatus. Barad’s notion...... the researchers’ moral narcissism in relation to the enactment of social-subjective phenomena in research; on the other hand, it leaves researchers with a broader spectrum of phenomena to include in their ethical considerations. This invites new questions: Which perspectives of human and non-human existence...

  6. Research ethics in dissertations: ethical issues and complexity of reasoning.

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    Kjellström, S; Ross, S N; Fridlund, B

    2010-07-01

    Conducting ethically sound research is a fundamental principle of scientific inquiry. Recent research has indicated that ethical concerns are insufficiently dealt with in dissertations. To examine which research ethical topics were addressed and how these were presented in terms of complexity of reasoning in Swedish nurses' dissertations. Analyses of ethical content and complexity of ethical reasoning were performed on 64 Swedish nurses' PhD dissertations dated 2007. A total of seven ethical topics were identified: ethical approval (94% of the dissertations), information and informed consent (86%), confidentiality (67%), ethical aspects of methods (61%), use of ethical principles and regulations (39%), rationale for the study (20%) and fair participant selection (14%). Four of those of topics were most frequently addressed: the majority of dissertations (72%) included 3-5 issues. While many ethical concerns, by their nature, involve systematic concepts or metasystematic principles, ethical reasoning scored predominantly at lesser levels of complexity: abstract (6% of the dissertations), formal (84%) and systematic (10%). Research ethics are inadequately covered in most dissertations by nurses in Sweden. Important ethical concerns are missing, and the complexity of reasoning on ethical principles, motives and implications is insufficient. This is partly due to traditions and norms that discount ethical concerns but is probably also a reflection of the ability of PhD students and supervisors to handle complexity in general. It is suggested that the importance of ethical considerations should be emphasised in graduate and post-graduate studies and that individuals with capacity to deal with systematic and metasystematic concepts are recruited to senior research positions.

  7. Advancing Ethical Neuroscience Research.

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    Borah, B Rashmi; Strand, Nicolle K; Chillag, Kata L

    2016-12-01

    As neuroscience research advances, researchers, clinicians, and other stakeholders will face a host of ethical challenges. The Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) has published two reports that provide recommendations on how to advance research endeavors ethically. The commission addressed, among other issues, how to prioritize different types of neuroscience research and how to include research participants who have impaired consent capacity. The Bioethics Commission's recommendations provide a foundation for ethical guidelines as neuroscience research advances and progresses. © 2016 American Medical Association. All Rights Reserved.

  8. Ethics in research

    International Nuclear Information System (INIS)

    Grass, Guido

    2014-01-01

    Taking into account the state of the science, the ethics committee has to decide in research projects with study-related radiation exposure, whether a compelling need for the research project exists. During the critical appraisal, further ethical and legal aspects have to be considered. Even without an application according to X-ray Ordinance (RoeV) or Radiation Protection Ordinance (StrlSchV), the Ethics Committee should advise the applicant whether from their perspective the project requires an approval according to RoeV and StrlSchV. This requires the regular involvement of expert members.

  9. Research in business ethics

    Directory of Open Access Journals (Sweden)

    G.J. Rossouw

    2001-08-01

    Full Text Available Research in business ethics is vital for the expansion and credibility of this fairly recent academic field. This article argues that there are three factors that are crucially important for research in business ethics. They are (a the ontological assumptions that research in this field is premised upon, (b the choice of research strategies and methodologies and (c the role of theory in research practice. Each of these three factors is explored and pitfalls relating to each of them are identified. The article also suggests guidelines for dealing with each of these factors in business ethics research.

  10. Ethical modernization: research misconduct and research ethics reforms in Korea following the Hwang affair.

    Science.gov (United States)

    Kim, Jongyoung; Park, Kibeom

    2013-06-01

    The Hwang affair, a dramatic and far reaching instance of scientific fraud, shocked the world. This collective national failure prompted various organizations in Korea, including universities, regulatory agencies, and research associations, to engage in self-criticism and research ethics reforms. This paper aims, first, to document and review research misconduct perpetrated by Hwang and members of his research team, with particular attention to the agencies that failed to regulate and then supervise Hwang's research. The paper then examines the research ethics reforms introduced in the wake of this international scandal. After reviewing American and European research governance structures and policies, policy makers developed a mixed model mindful of its Korean context. The third part of the paper examines how research ethics reform is proactive (a response to shocking scientific misconduct and ensuing external criticism from the press and society) as well as reactive (identification of and adherence to national or international ethics standards). The last part deals with Korean society's response to the Hwang affair, which had the effect of a moral atomic bomb and has led to broad ethical reform in Korean society. We conceptualize this change as ethical modernization, through which the Korean public corrects the failures of a growth-oriented economic model for social progress, and attempts to create a more trustworthy and ethical society.

  11. Internet Research Ethics and the Policy Gap for Ethical Practice in Online Research Settings

    Science.gov (United States)

    Warrell, Jacqueline G.; Jacobsen, Michele

    2014-01-01

    A growing number of education and social science researchers design and conduct online research. In this review, the Internet Research Ethics (IRE) policy gap in Canada is identified along with the range of stakeholders and groups that either have a role or have attempted to play a role in forming better ethics policy. Ethical issues that current…

  12. Research Integrity and Research Ethics in Professional Codes of Ethics: Survey of Terminology Used by Professional Organizations across Research Disciplines.

    Science.gov (United States)

    Komić, Dubravka; Marušić, Stjepan Ljudevit; Marušić, Ana

    2015-01-01

    Professional codes of ethics are social contracts among members of a professional group, which aim to instigate, encourage and nurture ethical behaviour and prevent professional misconduct, including research and publication. Despite the existence of codes of ethics, research misconduct remains a serious problem. A survey of codes of ethics from 795 professional organizations from the Illinois Institute of Technology's Codes of Ethics Collection showed that 182 of them (23%) used research integrity and research ethics terminology in their codes, with differences across disciplines: while the terminology was common in professional organizations in social sciences (82%), mental health (71%), sciences (61%), other organizations had no statements (construction trades, fraternal social organizations, real estate) or a few of them (management, media, engineering). A subsample of 158 professional organizations we judged to be directly involved in research significantly more often had statements on research integrity/ethics terminology than the whole sample: an average of 10.4% of organizations with a statement (95% CI = 10.4-23-5%) on any of the 27 research integrity/ethics terms compared to 3.3% (95% CI = 2.1-4.6%), respectively (Porganizations should define research integrity and research ethics issues in their ethics codes and collaborate within and across disciplines to adequately address responsible conduct of research and meet contemporary needs of their communities.

  13. Ethical issues in research.

    Science.gov (United States)

    Artal, Raul; Rubenfeld, Sheldon

    2017-08-01

    Biomedical research is currently guided by ethical standards that have evolved over many centuries. Historical and political events, social and legal considerations, and continuous medical and technological advances have led to the prevailing research ethics and practice. Currently, patients and research subjects have complete autonomy while under medical care or when volunteering as research subjects. Enrolling volunteers in human subjects research includes a detailed and meaningful informed consent process that follows the cardinal principles of ethics: autonomy, beneficence, nonmaleficence, and justice. These principles were gradually adopted after World War II, primarily in response to the unethical behavior of German physicians and scientists during the Third Reich. This review emphasizes the importance of historical milestones and the essential role that ethics has in contemporary medical research. Research protocols should achieve maximum benefits for the society, have clinical and scientific value, be subject to independent review, respect human dignity, and follow the principles of informed consent, and most importantly, subjects should have complete autonomy. However, current principles and regulations cannot cover every conceivable situation, particularly in view of the new advances in science and technology. New and evolving medical technology, genetic research, therapeutic interventions, and innovations challenge society to maintain the highest moral and ethical principles. Copyright © 2017. Published by Elsevier Ltd.

  14. When "Research Ethics" Become "Everyday Ethics": The Intersection of Inquiry and Practice in Practitioner Research

    Science.gov (United States)

    Mockler, Nicole

    2014-01-01

    The act of engaging in sound and ethical practitioner research, regardless of context, encourages and indeed demands an alignment between the ethical framework employed in the research enterprise and the "everyday ethics" of practice. This paper explores the ethical dimensions of what Cochran-Smith and Lytle have termed the dialectic of…

  15. Qualitative research ethics on the spot

    DEFF Research Database (Denmark)

    Sørensen, Nelli Øvre; Øye, Christine; Glasdam, Stinne

    2015-01-01

    Abstract Background: The increase in medical ethical regulations and bureaucracy handled by institutional review boards and healthcare institutions puts the researchers using qualitative methods in a challenging position. Method: Based on three different cases from three different research studies...... research ethical guidelines related to informed consent and doing no harm. Third, the article argues for the importance of having research ethical guidelines and review boards to question and discuss the possible ethical dilemmas that occur in qualitative research. Discussion and conclusion: Research...... ethics must be understood in qualitative research as relational, situational, and emerging. That is, that focus on ethical issues and dilemmas has to be paid attention on the spot and not only at the desktop....

  16. Research Integrity and Research Ethics in Professional Codes of Ethics: Survey of Terminology Used by Professional Organizations across Research Disciplines

    Science.gov (United States)

    Komić, Dubravka; Marušić, Stjepan Ljudevit; Marušić, Ana

    2015-01-01

    Professional codes of ethics are social contracts among members of a professional group, which aim to instigate, encourage and nurture ethical behaviour and prevent professional misconduct, including research and publication. Despite the existence of codes of ethics, research misconduct remains a serious problem. A survey of codes of ethics from 795 professional organizations from the Illinois Institute of Technology’s Codes of Ethics Collection showed that 182 of them (23%) used research integrity and research ethics terminology in their codes, with differences across disciplines: while the terminology was common in professional organizations in social sciences (82%), mental health (71%), sciences (61%), other organizations had no statements (construction trades, fraternal social organizations, real estate) or a few of them (management, media, engineering). A subsample of 158 professional organizations we judged to be directly involved in research significantly more often had statements on research integrity/ethics terminology than the whole sample: an average of 10.4% of organizations with a statement (95% CI = 10.4-23-5%) on any of the 27 research integrity/ethics terms compared to 3.3% (95% CI = 2.1–4.6%), respectively (Pethics concepts used prescriptive language in describing the standard of practice. Professional organizations should define research integrity and research ethics issues in their ethics codes and collaborate within and across disciplines to adequately address responsible conduct of research and meet contemporary needs of their communities. PMID:26192805

  17. Ethics and research in critical care.

    Science.gov (United States)

    Silverman, Henry J; Lemaire, Francois

    2006-11-01

    The past few years have witnessed several controversies regarding the ethics of conducting research involving critically ill patients, and such research is ethically challenging. Research ethics is a changing field, one that is influenced by empirical data, contemporary events, and new ideas regarding aspects of clinical trial design and protection of human subjects. We describe recent thoughts regarding several aspects of research ethics in the critical care context. The ability of the research community to conduct research ethically and to maintain public trust would benefit from heightened awareness to the principles and requirements that govern such research.

  18. Ethical Issues in Internet Research: International Good Practice and Irish Research Ethics Documents

    Science.gov (United States)

    Felzmann, Heike

    2013-01-01

    This chapter discusses the main research ethical concerns that arise in internet research and reviews existing research ethical guidance in the Irish context in relation to its application to internet research. The chapter begins with a brief outline of high profile cases in the early history of the internet that highlighted specific emerging…

  19. Where now for schizophrenia research?

    Science.gov (United States)

    Nutt, David J; Need, Anna C

    2014-08-01

    Schizophrenia continues to pose a serious challenge to neuroscience and psychiatry as well as to health care systems and to the patients and families who suffer this terrible and disabling illness. Major developments in the past few months in both genetics and drug development oblige us to consider novel drug discovery tactics for future schizophrenia research. Here we review what we consider to be the key issues and some suggested solutions. Copyright © 2014 The Authors. Published by Elsevier B.V. All rights reserved.

  20. Ethics in Educational Research

    Directory of Open Access Journals (Sweden)

    Alirio José Abreu Suarez

    2017-05-01

    Full Text Available This essay is a theoretical reflection about ethics in educational research. The same is done under a documentary approach with a literature review. Ethics in teaching is important because this is a reference for all undergraduate or graduate, as well as the need to consider education authorities at different levels and modalities in order to guide the actors in the educational process. At the same time, it can be expressed that the issue will serve as background for further studies and investigations that have to do with the issues raised. It also provides basic elements for teachers who want to make some related ethical codes, principles and injury caused the researcher studies. Similarly, ethics for being a discipline where are immersed fundamental human values such as honesty, solidarity, respect, tolerance among other aspects must be taken into account by researchers. Finally, it is worth noting that if you really want relevant research to provide new knowledge seeking social and educational transformation must begin with ethics as a relevant factor during all stages of a study.

  1. Health Research Ethics: Between Ethics Codes and Culture.

    Science.gov (United States)

    Gheondea-Eladi, Alexandra

    2017-10-01

    This article is meant to describe and analyze some of the ethical difficulties encountered in a pilot research on treatment decisions of patients with chronic viral hepatitis C infection in Romania. It departs from an overview of the main ethics codes, and it shows that social health research on patients falls in between institutional codes of ethics. Furthermore, the article moves on to analyze so-called "important moments" of empirical research, such as the implementation of the ethical protocol, dealing with informal payments and with information on shady actions, as well as requests of information from interviewed patients and deciding when and if to breach confidentiality. In an attempt to evaluate the ad hoc solutions found in the field, the concluding remarks discuss these issues at the threshold of theory and practice.

  2. Exploring perceptions and experiences of Bolivian health researchers with research ethics.

    Science.gov (United States)

    Sullivan, Sarah; Aalborg, Annette; Basagoitia, Armando; Cortes, Jacqueline; Lanza, Oscar; Schwind, Jessica S

    2015-04-01

    In Bolivia, there is increasing interest in incorporating research ethics into study procedures, but there have been inconsistent application of research ethics practices. Minimal data exist regarding the experiences of researchers concerning the ethical conduct of research. A cross-sectional study was administered to Bolivian health leaders with research experience (n = 82) to document their knowledge, perceptions, and experiences of research ethics committees and infrastructure support for research ethics. Results showed that 16% of respondents reported not using ethical guidelines to conduct their research and 66% indicated their institutions did not consistently require ethics approval for research. Barriers and facilitators to incorporate research ethics into practice were outlined. These findings will help inform a comprehensive rights-based research ethics education program in Bolivia. © The Author(s) 2015.

  3. A 'good' ethical review: audit and professionalism in research ethics

    DEFF Research Database (Denmark)

    Douglas-Jones, Rachel

    2015-01-01

    How does one conduct, measure and record a ‘good’ ethical review of biomedical research? To what extent do ethics committees invoke professionalism in researchers and in themselves, and to what extent do they see competence as adherence to a set of standard operating procedures for ethical review......? Drawing on ethnographic fieldwork with the Forum of Ethics Review Committees of Asia and the Pacific (FERCAP), a capacity-building NGO that runs ethics committee trainings and reviews in the Asia Pacific region, I develop an analysis of ethical review and its effects. I focus on a ‘second-order audit’ run...... readings of ‘ethics’. I begin and end with a reflection on the ethical effects of a measurement practice that takes ethics itself as its object....

  4. Ethics in Digital Research

    DEFF Research Database (Denmark)

    Tiidenberg, Katrin

    2017-01-01

    This chapter joins the voices that consider research ethics to be a matter of situated, responsible judgment, rather than a matter of universal principles and rigid guidelines. When collecting data about or in digitally saturated contexts, we need to consciously choose between what is available......, findable and collectable, and what should be found, collected and used for research. Thus, this chapter will not offer a set of rules; rather, it advocates for systematic (self) reflexivity in ethical qualitative inquiry. In the following I outline some of the persistent ethical issues that scholars...... involved in internet research are faced with. Classical ethical concepts like informed consent, confidentiality, anonymity, privacy, publicity and harm are difficult to operationalize in a socio-technical context that is persistent, replicable, scalable, and searchable. Examples from my own work...

  5. Brief report : ethical problems in research practice

    OpenAIRE

    Colnerud, Gunnel

    2013-01-01

    Most accounts of the ethical problems facing researchers across a broad spectrum of research fields come from ethicists, ethics committees, and specialists committed to the study of ethics in human research. In contrast, this study reports on the ethical questions that researchers, themselves, report facing in their everyday practice. Fifty-five Swedish researchers contributed 109 examples of ethical dilemmas, conflicts, and problems in research. They were all researchers at the postdoctoral ...

  6. The Ethical Problems of Reserach : An empirical study of ethics in research practice

    OpenAIRE

    Colnerud, Gunnel

    2013-01-01

    Most accounts of the ethical problems facing researchers across a broad spectrum of research fields come from ethicists, ethics committees and specialists committed to the study of ethics in human research. In contrast, this study reports on the ethical questions that researchers, themselves, report facing in their everyday practice. Fifty-five Swedish researchers contributed 109 examples of ethical dilemmas, conflicts and problems in research. They were all researchers at the post-doctoral l...

  7. The Ethics of Archival Research

    Science.gov (United States)

    McKee, Heidi A.; Porter, James E.

    2012-01-01

    What are the key ethical issues involved in conducting archival research? Based on examination of cases and interviews with leading archival researchers in composition, this article discusses several ethical questions and offers a heuristic to guide ethical decision making. Key to this process is recognizing the person-ness of archival materials.…

  8. Research ethics consultation: ethical and professional practice challenges and recommendations.

    Science.gov (United States)

    Sharp, Richard R; Taylor, Holly A; Brinich, Margaret A; Boyle, Mary M; Cho, Mildred; Coors, Marilyn; Danis, Marion; Havard, Molly; Magnus, David; Wilfond, Benjamin

    2015-05-01

    The complexity of biomedical research has increased considerably in the last decade, as has the pace of translational research. This complexity has generated a number of novel ethical issues for clinical investigators, institutional review boards (IRBs), and other oversight committees. In response, many academic medical centers have created formal research ethics consultation (REC) services to help clinical investigators and IRBs navigate ethical issues in biomedical research. Key functions of a REC service include assisting with research design and implementation, providing a forum for deliberative exploration of ethical issues, and supplementing regulatory oversight. As increasing numbers of academic research institutions establish REC services, there is a pressing need for consensus about the primary aims and policies that should guide these activities. Establishing clear expectations about the aims and policies of REC services is important if REC programs are to achieve their full potential. Drawing on the experiences of a Clinical and Translational Science Award Research Ethics Consultation Working Group, this article describes three major ethical and professional practice challenges associated with the provision of REC: (1) managing multiple institutional roles and responsibilities, (2) managing sensitive information, and (3) communicating with consultation requestors about how these issues are managed. The paper also presents several practical strategies for addressing these challenges and enhancing the quality of REC services.

  9. Ethics and mental illness research.

    Science.gov (United States)

    Roberts, Laura Weiss

    2002-09-01

    There are many tasks ahead in the area of ethics and mental illness research. We face unknown challenges in psychiatric genetics projects, studies of psychopharmacological interventions in children, controversial scientific designs (e.g., symptom challenge, medication-free interval), and cross-disciplinary research incorporating goals and methods of health services, epidemiology, and social and behavioral science endeavors. Boundaries between innovative clinical practices and research-related experimentation will become increasingly difficult to distinguish, as will the roles between clinicians, clinical researchers, and basic scientists. Moreover, the institutions and systems in which research occurs are being rapidly and radically revised, raising new questions about oversight responsibilities and standards. Our ability to identify and respond to the ethical questions arising in this uncharted territory will depend on our willingness to self-reflect, to integrate the observations and insights of the past century, to think with great clarity, and to anticipate novel ethical problems that keep company with scientific advancements. It will also depend on data. Empirical study of ethical dimensions of human research is essential to anchor and attune the intuitions and theoretical constructs that we develop. Science and ethics have changed over the past 100 years, as they will over the next century. It is ironic that the ethical acceptability of psychiatric research is so much in question at this time, when it holds so much promise for advancing our understanding of mental illness and its treatment. The tension between the duty to protect vulnerable individuals and the duty to perform human science will continue to grow, as long as ethics and science are seen as separable, opposing forces with different aims championed by different heroes. The profession of psychiatry is poised to move toward a new, more coherent research ethics paradigm in which scientific and

  10. Familiar ethical issues amplified: how members of research ethics committees describe ethical distinctions between disaster and non-disaster research.

    Science.gov (United States)

    Tansey, Catherine M; Anderson, James; Boulanger, Renaud F; Eckenwiler, Lisa; Pringle, John; Schwartz, Lisa; Hunt, Matthew

    2017-06-28

    The conduct of research in settings affected by disasters such as hurricanes, floods and earthquakes is challenging, particularly when infrastructures and resources were already limited pre-disaster. However, since post-disaster research is essential to the improvement of the humanitarian response, it is important that adequate research ethics oversight be available. We aim to answer the following questions: 1) what do research ethics committee (REC) members who have reviewed research protocols to be conducted following disasters in low- and middle-income countries (LMICs) perceive as the key ethical concerns associated with disaster research?, and 2) in what ways do REC members understand these concerns to be distinct from those arising in research conducted in non-crisis situations? This qualitative study was developed using interpretative description methodology; 15 interviews were conducted with REC members. Four key ethical issues were identified as presenting distinctive considerations for disaster research to be implemented in LMICs, and were described by participants as familiar research ethics issues that were amplified in these contexts. First, REC members viewed disaster research as having strong social value due to its potential for improving disaster response, but also as requiring a higher level of justification compared to other research settings. Second, they identified vulnerability as an overarching concern for disaster research ethics, and a feature that required careful and critical appraisal when assessing protocols. They noted that research participants' vulnerabilities frequently change in the aftermath of a disaster and often in unpredictable ways. Third, they identified concerns related to promoting and maintaining safety, confidentiality and data security in insecure or austere environments. Lastly, though REC members endorsed the need and usefulness of community engagement, they noted that there are significant challenges in a disaster

  11. Ethical considerations for field research on fishes

    Directory of Open Access Journals (Sweden)

    Rhett H. Bennett

    2016-12-01

    Full Text Available Collection of data from animals for research purposes can negatively impact target or by-catch species if suitable animal ethics practices are not followed. This study aimed to assess the ethical requirements of peer-reviewed scientific journals that publish primary literature on fishes, and review the ethical considerations and animal care guidelines of national and international documents on the ethical treatment of animals for research, to provide an overview of the general ethical considerations for field research on fishes. A review of 250 peer-reviewed, ISI-rated journals publishing primary research on fishes revealed that nearly half (46% had no mention of ethics, treatment of animals or ethical requirements for publication in their author guidelines or publication policies. However, 18% of the journals reviewed identify a specific set of ethical guidelines to be followed before publishing research involving animals. Ethical considerations for investigators undertaking field research on fishes, common to most animal care policies, legislation and guiding documents, include adhering to relevant legislation, minimising sample sizes, reducing or mitigating pain and distress, employing the most appropriate and least invasive techniques and accurately reporting methods and findings. This information will provide potential investigators with a useful starting point for designing and conducting ethical field research. Application of ethical best practices in field sampling studies will improve the welfare of study animals and the conservation of rare and endangered species. Conservation implications: This article provides a list of ethical considerations for designing and conducting field research on fishes. By reviewing sampling techniques and processes that are frequently used in field research on fishes and by highlighting the potential negative impacts of these sampling techniques, this article is intended to assist researchers in planning

  12. A Research Agenda for Humanitarian Health Ethics

    Science.gov (United States)

    Hunt, Matthew; Schwartz, Lisa; Pringle, John; Boulanger, Renaud; Nouvet, Elysée; O'Mathúna, Dónal; Arya, Neil; Bernard, Carrie; Beukeboom, Carolyn; Calain, Philippe; de Laat, Sonya; Eckenwiler, Lisa; Elit, Laurie; Fraser, Veronique; Gillespie, Leigh-Anne; Johnson, Kirsten; Meagher, Rachel; Nixon, Stephanie; Olivier, Catherine; Pakes, Barry; Redwood-Campbell, Lynda; Reis, Andreas; Renaldi, Teuku; Singh, Jerome; Smith, Maxwell; Von Schreeb, Johan

    2014-01-01

    This paper maps key research questions for humanitarian health ethics: the ethical dimensions of healthcare provision and public health activities during international responses to situations of humanitarian crisis. Development of this research agenda was initiated at the Humanitarian Health Ethics Forum (HHE Forum) convened in Hamilton, Canada in November 2012. The HHE Forum identified priority avenues for advancing policy and practice for ethics in humanitarian health action. The main topic areas examined were: experiences and perceptions of humanitarian health ethics; training and professional development initiatives for humanitarian health ethics; ethics support for humanitarian health workers; impact of policies and project structures on humanitarian health ethics; and theoretical frameworks and ethics lenses. Key research questions for each topic area are presented, as well as proposed strategies for advancing this research agenda. Pursuing the research agenda will help strengthen the ethical foundations of humanitarian health action. PMID:25687273

  13. Glutamate in schizophrenia: clinical and research implications.

    Science.gov (United States)

    Goff, D C; Wine, L

    1997-10-30

    The excitatory amino acids, glutamate and aspartate, are of interest to schizophrenia research because of their roles in neurodevelopment, neurotoxicity and neurotransmission. Recent evidence suggests that densities of glutamatergic receptors and the ratios of subunits composing these receptors may be altered in schizophrenia, although it is unclear whether these changes are primary or compensatory. Agents acting at the phencyclidine binding site of the NMDA receptor produce symptoms of schizophrenia in normal subjects, and precipitate relapse in patients with schizophrenia. The improvement of negative symptoms with agents acting at the glycine modulatory site of the NMDA receptor, as well as preliminary evidence that clozapine may differ from conventional neuroleptic agents in its effects on glutamatergic systems, suggest that clinical implications may follow from this model. While geriatric patients may be at increased risk for glutamate-mediated neurotoxicity, very little is known about the specific relevance of this model to geriatric patients with schizophrenia.

  14. Literacy Research, Ethics and Social Responsibility

    Science.gov (United States)

    Delandshere, Ginette

    2007-01-01

    In this article I examine the ethics of conducting literacy research, beyond what is typically addressed in current ethical guidelines. Using a few studies as examples, I analyse how the conception of research that underlies literacy research is grounded in ethics based on individual autonomy that allow researchers to disregard their social…

  15. Whose Ethics, Whose Accountability? A Debate about University Research Ethics Committees

    Science.gov (United States)

    Hoecht, Andreas

    2011-01-01

    Research ethics approval procedures and research ethics committees (RECs) are now well-established in most Western Universities. RECs base their judgements on an ethics code that has been developed by the health and biomedical sciences research community and that is widely considered to be universally valid regardless of discipline. On the other…

  16. Ethical virtues in scientific research.

    Science.gov (United States)

    Resnik, David B

    2012-01-01

    Most approaches to promoting integrity in research are principle-based in that they portray ethical conduct as consisting of adherence to ethical rules, duties, or responsibilities. Bruce MacFarlane has recently criticized the principle-based approach to promoting integrity in research and offered a virtue-based alternative. MacFarlane argues that principle-based approaches do not provide adequate guidance for ethical decision-making and are not very useful in moral education. In this article, I examine and critique MacFarlane's defense of the virtue-based approach. I argue that virtue-based and principle-based approaches to ethics are complementary and that they both can help promote research integrity.

  17. Ethnographic research with adolescent students: situated fieldwork ethics and ethical principles governing human research.

    Science.gov (United States)

    Hemmings, Annette

    2009-12-01

    This paper explores ethical dilemmas in situated fieldwork ethics concerning ethnographic studies of adolescent students. While consequentialist and deontological ethics form the basis of the ethical stances shared by ethnographers and research ethics committees, the interpretation of those principles may diverge in school-based ethnography with adolescent students because of the particular role of the adult ethnographer vis-à-vis developmentally immature adolescents not held legally responsible for many of their actions. School ethnographers attempt to build trust with adolescent participants in order to learn about their hidden cultural worlds, which may involve activities that are very harmful to the youths involved. They face many difficult and sometimes unexpected choices, including whether to intervene and how to represent events and adolescents in published findings. Scenarios with examples drawn from research conducted in public high schools are used to illustrate and explicate dilemmas in formal research and latent insider/outsider roles and relations involving harmful adolescent behaviors, advocacy, and psychological trauma. Also examined are analytical procedures used to construct interpretations leading to representations of research participants in the resulting publication.

  18. Research ethics and approval process: A guide for new GP researchers.

    Science.gov (United States)

    Liaw, Siaw-Teng; Tam, Chun Wah Michael

    2015-06-01

    The underlying moral principles and values, and the virtues held as desirable for a researcher, should be reflected upon and embedded in the research. The foundation step is to download the National Health and Medical Research Council's (NHMRC's) National Statement on Ethical Conduct in Human Research and the NHMRC's Guidelines for Ethical Conduct in Aboriginal and Torres Strait Islander Health Research to use as references. This paper draws on the experience of The Royal Australian College of General Practitioners' (RACGP's) National Research and Evaluation Ethics Committee to provide an eight-step approach to the research ethics process. The researcher should use the research ethics process as an opportunity to foster and guide the development and conduct of ethical research.

  19. Research Ethics Consultation: Ethical and Professional Practice Challenges and Recommendations

    Science.gov (United States)

    Sharp, Richard R.; Taylor, Holly A.; Brinich, Margaret A.; Boyle, Mary M.; Cho, Mildred; Coors, Marilyn; Danis, Marion; Havard, Molly; Magnus, David; Wilfond, Benjamin

    2015-01-01

    The complexity of biomedical research has increased considerably in the last decade, as has the pace of translational research. This complexity has generated a number of novel ethical issues for clinical investigators, institutional review boards (IRBs), and other oversight committees. In response, many academic medical centers have created formal research ethics consultation (REC) services to help clinical investigators and IRBs navigate ethical issues in biomedical research. Key functions of a REC service include: assisting with research design and implementation, providing a forum for deliberative exploration of ethical issues, and supplementing regulatory oversight. As increasing numbers of academic research institutions establish REC services, there is a pressing need for consensus about the primary aims and policies that should guide these activities. Establishing clear expectations about the aims and policies of REC services is important if REC programs are to achieve their full potential. Drawing on the experiences of a Clinical Translational Science Award (CTSA) Research Ethics Consultation Working Group, this article describes three major ethical and professional practice challenges associated with the provision of REC: 1) managing multiple institutional roles and responsibilities, 2) managing sensitive information, and 3) communicating with consultation requestors about how these issues are managed. The paper also presents several practical strategies for addressing these challenges and enhancing the quality of REC services. PMID:25607942

  20. Ethics in clinical research: the Indian perspective.

    Science.gov (United States)

    Sanmukhani, J; Tripathi, C B

    2011-03-01

    Ethics in clinical research focuses largely on identifying and implementing the acceptable conditions for exposure of some individuals to risks and burdens for the benefit of society at large. Ethical guidelines for clinical research were formulated only after discovery of inhumane behaviour with participants during research experiments. The Nuremberg Code was the first international code laying ethical principles for clinical research. With increasing research all over, World Health Organization formulated guidelines in the form of Declaration of Helsinki in 1964. The US laid down its guidelines for ethical principles in the Belmont Report after discovery of the Tuskegee's Syphilis study. The Indian Council of Medical Research has laid down the 'Ethical Guidelines for Biomedical Research on Human Subjects' in the year 2000 which were revised in 2006. It gives twelve general principles to be followed by all biomedical researchers working in the country. The Ethics Committee stands as the bridge between the researcher and the ethical guidelines of the country. The basic responsibility of the Ethics Committee is to ensure an independent, competent and timely review of all ethical aspects of the project proposals received in order to safeguard the dignity, rights, safety and well-being of all actual or potential research participants. A well-documented informed consent process is the hallmark of any ethical research work. Informed consent respects individual's autonomy, to participate or not to participate in research. Concepts of vulnerable populations, therapeutic misconception and post trial access hold special importance in ethical conduct of research, especially in developing countries like India, where most of the research participants are uneducated and economically backward.

  1. Research Ethics and Ethical Research: Some Observations from the Global South

    Science.gov (United States)

    Zhang, J. J.

    2017-01-01

    This paper aims to achieve two objectives. Firstly, it elicits some of the concerns for universal research ethics. It is argued that ethical codes are never universal; they are geographically sensitive. As such, it is important to "develop authentic individual responses to potentially unique circumstances". Secondly, in going beyond a…

  2. Research ethics in physical education

    Directory of Open Access Journals (Sweden)

    Júlio César Schmitt Rocha

    2009-06-01

    Full Text Available The objective here is to point out ethics in Physical Education research against a backdrop of individual and collective human conduct. Since Plato, the question of ethics in the Western world has been an incessant search for the virtues to harmonize personal and social wellbeing and for the absolute principles of conduct: Autonomy, Beneficence and Justice. Physical Education cannot exempt itself from these and its countless areas of research. In addition to the moral education that develops and solidifies within social groups, the characteristic of which is action on an individual level, we must also consider ethical principles such as those defended by the Physical Education World Manifesto and those that regulate the professional activities of Physical Education professionals. Irrespective of the area investigated, Research in Physical Education will always clash with institutionalized ethical principles enforced by ethics committees, councils and the values accepted by the researchers. Committees strive to preserve the integrity and dignity of the people enrolled on research studies while the researchers challenge the limits of knowledge at an uncomfortable frontier between the acceptable and the unacceptable within a given context of academic vision and needs.

  3. Mental health research, ethics and multiculturalism.

    Science.gov (United States)

    Bailes, Marion J; Minas, I Harry; Klimidis, Steven

    2006-01-01

    In this paper we examine ethical issues relevant to conducting mental health research with refugees and immigrant communities that have cultural orientations and social organisation that are substantially different to those of the broader Australian community, and we relate these issues to NH&MRC Guidelines. We describe the development and conduct of a mental health research project carried out recently in Melbourne with the Somali community, focusing on ethical principles involved, and relating these to the NH&MRC National Statement on Ethical Conduct in Research Involving Humans, and the NH&MRC document Values and Ethics: Guidelines for Ethical Conduct in Aboriginal and Torres Strait Islander Health Research. The experience of conducting mental health research with the Somali community highlights the fact that the principles of inclusion and benefit enunciated in the NH&MRC document Values and Ethics are particularly pertinent when conducting research with refugees and immigrant communities that are culturally distant to those of the broader Australian community. These principles inform issues of research design and consent, as well as guiding respectful engagement with the participating community and communication of the research findings.

  4. 'Wicked' ethics: Compliance work and the practice of ethics in HIV research.

    Science.gov (United States)

    Heimer, Carol A

    2013-12-01

    Using ethnographic material collected between 2003 and 2007 in five HIV clinics in the US, South Africa, Uganda, and Thailand, this article examines "official ethics" and "ethics on the ground." It compares the ethical conundrums clinic staff and researchers confront in their daily work as HIV researchers with the dilemmas officially identified as ethical issues by bioethicists and people responsible for ethics reviews and compliance with ethics regulations. The tangled relation between ethical problems and solutions invites a comparison to Rittel and Webber's "wicked problems." Official ethics' attempts to produce universal solutions often make ethics problems even more wickedly intractable. Ethics on the ground is in part a reaction to this intractability. Copyright © 2012 Elsevier Ltd. All rights reserved.

  5. The ethical challenges of animal research.

    Science.gov (United States)

    Ferdowsian, Hope R; Gluck, John P

    2015-10-01

    In 1966, Henry K. Beecher published an article entitled "Ethics and Clinical Research" in the New England Journal of Medicine, which cited examples of ethically problematic human research. His influential paper drew attention to common moral problems such as inadequate attention to informed consent, risks, and efforts to provide ethical justification. Beecher's paper provoked significant advancements in human research policies and practices. In this paper, we use an approach modeled after Beecher's 1966 paper to show that moral problems with animal research are similar to the problems Beecher described for human research. We describe cases that illustrate ethical deficiencies in the conduct of animal research, including inattention to the issue of consent or assent, incomplete surveys of the harms caused by specific protocols, inequitable burdens on research subjects in the absence of benefits to them, and insufficient efforts to provide ethical justification. We provide a set of recommendations to begin to address these deficits.

  6. Teaching ethical aptitude to graduate student researchers.

    Science.gov (United States)

    Weyrich, Laura S; Harvill, Eric T

    2013-01-01

    Limited time dedicated to each training areas, irrelevant case-studies, and ethics "checklists" have resulted in bare-bones Responsible Conduct of Research (RCR) training for present biomedical graduate student researchers. Here, we argue that science graduate students be taught classical ethical theory, such as virtue ethics, consequentialist theory, and deontological theory, to provide a basic framework to guide researchers through ethically complex situations and examine the applicability, implications, and societal ramifications of their research. Using a relevant biomedical research example to illustrate this point, we argue that proper ethics training for graduate student researchers not only will enhance current RCR training, but train more creative, responsible scientists.

  7. [Educational needs assessment on research ethics among nursing researchers].

    Science.gov (United States)

    Jeong, Ihn Sook; Gu, Mee Ock; Kim, Keum Soon; Lee, Kwang Ja; Yang, Soo

    2010-08-01

    This study aimed to investigate the educational needs of research ethics among nursing researchers. Convenience sample of 161 nursing professors and 262 master or doctoral nursing students participated in the study. Data was collected with self-reported questionnaire from June to August 2009, and analyzed with descriptive statistics using SPSS WIN (version 14.0). Among 161 nursing professors, about 31.7% has educated nursing ethics in the postgraduate course. The most common course was nursing research or methodology (62.7%), and median education time was 2 hr. Areas that showed difficulty in understanding was the conflict of interest and plagiarism for professors and falsification and fabrication for graduate students. Average knowledge on the research ethics was 75.4 points for professors and 61.6 points for students based on the 100 points. Educational needs of research ethics among nursing professors and students in the postgraduate course was high. We recommend both basic and advanced research ethics educational programs for the nursing researchers. The basic course should be at least 6 hr and include various cases and something to discuss.

  8. Nursing research ethics, guidance and application in practice.

    Science.gov (United States)

    Doody, Owen; Noonan, Maria

    2016-07-28

    Ethics is fundamental to good research practice and the protection of society. From a historical point of view, research ethics has had a chequered past and without due cognisance there is always the potential for research to do harm. Research ethics is fundamental to research practice, nurse education and the development of evidence. In conducting research, it is important to plan for and anticipate any potential or actual risks. To engage in research, researchers need to develop an understanding and knowledge of research ethics and carefully plan how to address ethics within their research. This article aims to enhance students' and novice researchers' research ethics understanding and its application to nursing research.

  9. Participatory action research: considerations for ethical review.

    Science.gov (United States)

    Khanlou, N; Peter, E

    2005-05-01

    This paper addresses the distinctive nature of participatory action research (PAR) in relation to ethical review requirements. As a framework for conducting research and reducing health disparities, PAR is gaining increased attention in community and public health research. As a result, PAR researchers and members of Research Ethics Boards could benefit from an increased understanding of the array of ethical concerns that can arise. We discuss these concerns in light of commonly held ethical requirements for clinical research (social or scientific value, scientific validity, fair subject/participant selection, favourable risk-benefit ratio, independent review, informed consent, and respect for potential and enrolled participants) and refer to guidelines specifically developed for participatory research in health promotion. We draw from our community-based experiences in mental health promotion research with immigrant and culturally diverse youth to illustrate the ethical advantages and challenges of applying a PAR approach. We conclude with process suggestions for Research Ethics Boards.

  10. Hazy Boundaries: Virtual Communities and Research Ethics

    Directory of Open Access Journals (Sweden)

    Helena Kantanen

    2016-10-01

    Full Text Available This paper examines ethical issues specific to research into virtual communities. Drawing on an empirical case with online forums of education experts, we identify the following key issues: publicity versus privacy of the community; the definition of human subjects research; participant recruitment; informed consent; and ethical questions associated with observing virtual communities, and with reporting and disseminating research results. We maintain that different research cultures in different countries can present challenges when studying global forums. Acknowledging the ephemeral characteristics of Internet contexts, this paper argues that ethical considerations should be more case-based, instead of relying on one model for all solutions. We suggest that local ethics committees or institutional review boards could, with their expert knowledge of ethics, provide valuable support for researchers operating in the complex and dynamic terrain of Internet research, as well as in fields and research settings where an ethical review is not a standard part of the research process.

  11. Peter Koslowski’s Ethics and Economics or Ethical Economy: A Framework for a research agenda in business ethics

    Directory of Open Access Journals (Sweden)

    Jacob Dahl Rendtorff

    2016-03-01

    Full Text Available This paper presents the concept of ethical economy (Wirtschaftsethik and the relation between ethics and economics on the basis of the work of the German ethical economist Peter Koslowski. The concept of ethical economy includes three levels: micro, meso and macro levels; and it also deals with the philosophical analysis of the ethical foundations of the economy. After the discussion of these elements of the ethical economy, the paper presents some possible research topics for a research agenda about economic ethics or ethical economy.

  12. The ethics of psychopharmacological research in legal minors

    Directory of Open Access Journals (Sweden)

    Koelch Michael

    2008-12-01

    Full Text Available Abstract Research in psychopharmacology for children and adolescents is fraught with ethical problems and tensions. This has practical consequences as it leads to a paucity of the research that is essential to support the treatment of this vulnerable group. In this article, we will discuss some of the ethical issues which are relevant to such research, and explore their implications for both research and standard care. We suggest that finding a way forward requires a willingness to acknowledge and discuss the inherent conflicts between the ethical principles involved. Furthermore, in order to facilitate more, ethically sound psychopharmacology research in children and adolescents, we suggest more ethical analysis, empirical ethics research and ethics input built into psychopharmacological research design.

  13. The HIV and Drug Abuse Prevention Research Ethics Training Institute: Training Early-Career Scientists to Conduct Research on Research Ethics

    Science.gov (United States)

    Fisher, Celia B.; Yuko, Elizabeth

    2018-01-01

    The responsible conduct of HIV/drug abuse prevention research requires investigators with both the knowledge of and ability to generate empirical data that can enhance global ethical practices and policies. This article describes a multidisciplinary program offering early-career professionals a 2-year intensive summer curriculum along with funding to conduct a mentored research study on a wide variety of HIV/drug abuse research ethics topics. Now in its fifth year, the program has admitted 29 trainees who have to date demonstrated increased knowledge of research ethics, produced 17 peer-reviewed publications, 46 professional presentations, and submitted or been awarded five related federal grants. The institute also hosts a global information platform providing general and HIV/drug abuse relevant research ethics educational and research resources that have had more than 38,800 unique visitors from more than 150 countries. PMID:26564944

  14. Research Ethics in Sign Language Communities

    Science.gov (United States)

    Harris, Raychelle; Holmes, Heidi M.; Mertens, Donna M.

    2009-01-01

    Codes of ethics exist for most professional associations whose members do research on, for, or with sign language communities. However, these ethical codes are silent regarding the need to frame research ethics from a cultural standpoint, an issue of particular salience for sign language communities. Scholars who write from the perspective of…

  15. Ethics as Critique: Foucault’s Contribution to Research Ethics

    DEFF Research Database (Denmark)

    Christensen, Gerd

    The aim of my talk is to discuss how we can consider Michel Foucault’s concept of ethos and his endeavor for endless critique as an important contribution to research ethics in educational research. First, I intend to outline Foucault’s concept of ethos and its link to his concept of critique....... Second, I intend to demonstrate how it can fruitfully be applied to the established research ethics within qualitative research. This will occur through examples culled from a qualitative research project on the application of project studies (PBL) as a method at two Danish universities. The findings...... students. This had a significant impact on the possibilities and educational success of the students: while some students were marginalized or even excluded from the groups (and maybe even from the university) others were subjectivated as successful students. Thus, the findings points at ethics in general...

  16. Research Ethics in Big Data.

    Science.gov (United States)

    Hammer, Marilyn J

    2017-05-01

    The ethical conduct of research includes, in part, patient agreement to participate in studies and the protection of health information. In the evolving world of data science and the accessibility of large quantities of web-based data created by millions of individuals, novel methodologic approaches to answering research questions are emerging. This article explores research ethics in the context of big data.

  17. The HIV and Drug Abuse Prevention Research Ethics Training Institute: Training Early-Career Scientists to Conduct Research on Research Ethics.

    Science.gov (United States)

    Fisher, Celia B; Yuko, Elizabeth

    2015-12-01

    The responsible conduct of HIV/drug abuse prevention research requires investigators with both the knowledge of and ability to generate empirical data that can enhance global ethical practices and policies. This article describes a multidisciplinary program offering early-career professionals a 2-year intensive summer curriculum along with funding to conduct a mentored research study on a wide variety of HIV/drug abuse research ethics topics. Now in its fifth year, the program has admitted 29 trainees who have to date demonstrated increased knowledge of research ethics, produced 17 peer-reviewed publications, 46 professional presentations, and submitted or been awarded five related federal grants. The institute also hosts a global information platform providing general and HIV/drug abuse relevant research ethics educational and research resources that have had more than 38,800 unique visitors from more than 150 countries. © The Author(s) 2015.

  18. Ethics in Higher Education Research

    Science.gov (United States)

    Parsell, Mitch; Ambler, Trudy; Jacenyik-Trawoger, Christa

    2014-01-01

    Many educational researchers have experienced challenges in obtaining ethics approval. This article explores some of the reasons why this is the case, looking specifically at the participatory action research methodology. The authors' experience of seeking ethics approval for a project intended to introduce peer review as an enhancement process is…

  19. What Price Ethics: New Research Directions in Counselor Ethical Behavior

    Science.gov (United States)

    Paradise, Louis V.

    1978-01-01

    This paper briefly examines research on the ethical behavior of counselors, demonstrating that new directions in this area are needed, and that new research questions must be asked if significant information relating to counseling and ethics is to advance. Areas of inquiry and methods for investigation are suggested. (Author)

  20. "Living" Ethical Dilemmas for Researchers When Researching with Children

    Science.gov (United States)

    Mortari, Luigina; Harcourt, Deborah

    2012-01-01

    This article will explore some of the ethical dilemmas that confront researchers when they seek to invite children's participation in research. It firstly tracks the historical landscape of ethical research and will examine the influence of the United Nations Convention on the Rights of the Child (UNCRC) on participatory research with children.…

  1. Ethics creep or governance creep? Challenges for Australian Human Research Ethics Committees (HRECS).

    Science.gov (United States)

    Gorman, Susanna M

    2011-09-01

    Australian Human Research Ethics Committees (HRECs) have to contend with ever-increasing workloads and responsibilities which go well beyond questions of mere ethics. In this article, I shall examine how the roles of HRECs have changed, and show how this is reflected in the iterations of the National Statement on Ethical Conduct in Human Research 2007 (NS). In particular I suggest that the focus of the National Statement has shifted to concentrate on matters of research governance at the expense of research ethics, compounded by its linkage to the Australian Code for the Responsible Conduct of Research (2007) in its most recent iteration. I shall explore some of the challenges this poses for HRECs and institutions and the risks it poses to ensuring that Australian researchers receive clear ethical guidance and review.

  2. Ethics, Governance, Research and Enterprise

    Science.gov (United States)

    Lategan, Laetus; Hooper, Peter

    2009-01-01

    The focus of this paper is to reflect on research ethics practices at universities and particularly on the additional considerations needed as "enterprise" becomes a key driver across the sector internationally. The outcome of the paper is to identify suitable guidelines for dealing with the management of research ethics in this changing…

  3. How do we know that research ethics committees are really working? The neglected role of outcomes assessment in research ethics review

    Directory of Open Access Journals (Sweden)

    Bouësseau Marie-Charlotte

    2008-03-01

    Full Text Available Abstract Background Countries are increasingly devoting significant resources to creating or strengthening research ethics committees, but there has been insufficient attention to assessing whether these committees are actually improving the protection of human research participants. Discussion Research ethics committees face numerous obstacles to achieving their goal of improving research participant protection. These include the inherently amorphous nature of ethics review, the tendency of regulatory systems to encourage a focus on form over substance, financial and resource constraints, and conflicts of interest. Auditing and accreditation programs can improve the quality of ethics review by encouraging the development of standardized policies and procedures, promoting a common base of knowledge, and enhancing the status of research ethics committees within their own institutions. However, these mechanisms focus largely on questions of structure and process and are therefore incapable of answering many critical questions about ethics committees' actual impact on research practices. The first step in determining whether research ethics committees are achieving their intended function is to identify what prospective research participants and their communities hope to get out of the ethics review process. Answers to this question can help guide the development of effective outcomes assessment measures. It is also important to determine whether research ethics committees' guidance to investigators is actually being followed. Finally, the information developed through outcomes assessment must be disseminated to key decision-makers and incorporated into practice. This article offers concrete suggestions for achieving these goals. Conclusion Outcomes assessment of research ethics committees should address the following questions: First, does research ethics committee review improve participants' understanding of the risks and potential benefits of

  4. “Just Chatting”: Research Ethics and Cyberspace

    Directory of Open Access Journals (Sweden)

    Ellen Whiteman

    2007-06-01

    Full Text Available Research conducted through computer-mediated communication is challenging traditional definitions of what is ethical research. In this article the author examines the changing role of assent/consent, confidentiality, and participant observation in qualitative research conducted in cyberspace. She concludes that REBs (research ethic boards might be becoming more conservative in their decisions at the very moment that Internet research requires more flexibility and broader ethical definitions.

  5. Ethics in clinical research: The Indian perspective

    OpenAIRE

    J Sanmukhani; C B Tripathi

    2011-01-01

    Ethics in clinical research focuses largely on identifying and implementing the acceptable conditions for exposure of some individuals to risks and burdens for the benefit of society at large. Ethical guidelines for clinical research were formulated only after discovery of inhumane behaviour with participants during research experiments. The Nuremberg Code was the first international code laying ethical principles for clinical research. With increasing research all over, World Health Organiza...

  6. Ethical issues in research on children

    Directory of Open Access Journals (Sweden)

    Đurić Slađana

    2012-01-01

    Full Text Available Ethical issues that appear in researching children are the subject matter of relatively rich scientific literature, as well as a multitude of national and professional ethical codices. The broad thematization of ethical principles is indeed instigated by the rise of awareness of the seriousness of this problem, as well as by growing fears of potential abuse of children in contemporary research projects. General assertion that children are a vulnerable category of subjects that require special attention and protection from misuse in research projects prevails in literature. The main objective of this paper is to present general ethical issues that various areas of expertise researchers face when children and youth are the subjects of their studies. The principle of voluntary participation, the principle of balanced researcher - respondent relationship, and the principles of privacy, confidentiality and anonymity in studies of children are particularly presented.

  7. Research Ethics III: Publication Practices and Authorship, Conflicts of Interest, and Research Misconduct

    Science.gov (United States)

    Horner, Jennifer; Minifie, Fred D.

    2011-01-01

    Purpose: In this series of articles--"Research Ethics I", "Research Ethics II", and "Research Ethics III"--the authors provide a comprehensive review of the 9 core domains for the responsible conduct of research (RCR) as articulated by the Office of Research Integrity. Method: In "Research Ethics III", they review the RCR domains of publication…

  8. Research Ethics with Undergraduates in Summer Research Training Programs

    Science.gov (United States)

    Cheung, I.; Yalcin, K.

    2016-02-01

    Many undergraduate research training programs incorporate research ethics into their programs and some are required. Engaging students in conversations around challenging topics such as conflict of interest, cultural and gender biases, what is science and what is normative science can difficult in newly formed student cohorts. In addition, discussing topics with more distant impacts such as science and policy, intellectual property and authorship, can be difficult for students in their first research experience that have more immediate concerns about plagiarism, data manipulation, and the student/faculty relationship. Oregon State University's Research Experience for Undergraduates (REU) in Ocean Sciences: From Estuaries to the Deep Sea as one model for incorporating a research ethics component into summer undergraduate research training programs. Weaved into the 10-week REU program, undergraduate interns participate in a series of conversations and a faculty mentor panel focused on research ethics. Topics discussed are in a framework for sharing myths, knowledge and personal experiences on issues in research with ethical implications. The series follows guidelines and case studies outlined from the text, On Being A Scientist: Responsible Conduct In Research Committee on Science, Engineering, and Public Policy, National Academy of Sciences.

  9. Steps to strengthen ethics in organizations: research findings, ethics placebos, and what works.

    Science.gov (United States)

    Pope, Kenneth S

    2015-01-01

    Research shows that many organizations overlook needs and opportunities to strengthen ethics. Barriers can make it hard to see the need for stronger ethics and even harder to take effective action. These barriers include the organization's misleading use of language, misuse of an ethics code, culture of silence, strategies of justification, institutional betrayal, and ethical fallacies. Ethics placebos tend to take the place of steps to see, solve, and prevent problems. This article reviews relevant research and specific steps that create change.

  10. Schizophrenia and the Virtues of Self-Effacement

    Directory of Open Access Journals (Sweden)

    Paul Barry

    2016-01-01

    Full Text Available Michael Stocker’s “The Schizophrenia of Modern Ethical Theories” attacks versions of consequentialism and deontological ethics on the grounds that they are self-effacing. While it is often thought that Stocker’s argument gives us a reason to favour virtue ethics over those other theories, Simon Keller has argued that this is a mistake. He claims that virtue ethics is also self-effacing, and is therefore afflicted with the self-effacement-related problems that Stocker identifies in consequentialism and deontology. This paper defends virtue ethics against this claim. Although there is a kind of self-effacement involved in the exercise of virtue, this is quite different from the so-called schizophrenia that Stocker thinks is induced by modern ethical theory. Importantly, manifesting virtue does not require one to embrace mutually inconsistent moral commitments, as is at times encouraged by consequentialists and deontologists. This paper also considers a reading of the virtue-ethical criterion of right action that is encouraged by Bernard Williams’s distinction between a de re and a de dicto interpretation of the phrase “acting as the virtuous person would.” I argue that such a reading addresses concerns that a virtue-ethical criterion of right action inevitably generates a problematic form of self-effacement.

  11. Human research ethics committees in technical universities.

    Science.gov (United States)

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

    2014-07-01

    Human research ethics has developed in both theory and practice mostly from experiences in medical research. Human participants, however, are used in a much broader range of research than ethics committees oversee, including both basic and applied research at technical universities. Although mandated in the United States, the United Kingdom, Canada, and Australia, non-medical research involving humans need not receive ethics review in much of Europe, Asia, Latin America, and Africa. Our survey of the top 50 technical universities in the world shows that, where not specifically mandated by law, most technical universities do not employ ethics committees to review human studies. As the domains of basic and applied sciences expand, ethics committees are increasingly needed to guide and oversee all such research regardless of legal requirements. We offer as examples, from our experience as an ethics committee in a major European technical university, ways in which such a committee provides needed services and can help ensure more ethical studies involving humans outside the standard medical context. We provide some arguments for creating such committees, and in our supplemental article, we provide specific examples of cases and concerns that may confront technical, engineering, and design research, as well as outline the general framework we have used in creating our committee. © The Author(s) 2014.

  12. Applying for ethical approval for research: the main issues.

    Science.gov (United States)

    Gelling, Leslie

    2016-01-13

    The need to obtain research ethical approval is common to all research involving human participants. This approval must be obtained before research participants can be approached and before data collection can begin. The process of ethical review is one way that research participants can be confident that possible risks have been considered, minimised and deemed acceptable. This article outlines some of the main issues researchers should consider when planning an application for research ethical approval by answering the following six questions: 'Do I need research ethical approval?', 'How many applications will I need to make?', 'Where should I apply for research ethical approval?', 'What do I need to include in my application?', 'What do research ethics committees look for?' and 'What other approvals might I need?' Answering these questions will enable researchers to navigate the ethical review process.

  13. Reconsidering 'ethics' and 'quality' in healthcare research: the case for an iterative ethical paradigm.

    Science.gov (United States)

    Stevenson, Fiona A; Gibson, William; Pelletier, Caroline; Chrysikou, Vasiliki; Park, Sophie

    2015-05-08

    UK-based research conducted within a healthcare setting generally requires approval from the National Research Ethics Service. Research ethics committees are required to assess a vast range of proposals, differing in both their topic and methodology. We argue the methodological benchmarks with which research ethics committees are generally familiar and which form the basis of assessments of quality do not fit with the aims and objectives of many forms of qualitative inquiry and their more iterative goals of describing social processes/mechanisms and making visible the complexities of social practices. We review current debates in the literature related to ethical review and social research, and illustrate the importance of re-visiting the notion of ethics in healthcare research. We present an analysis of two contrasting paradigms of ethics. We argue that the first of these is characteristic of the ways that NHS ethics boards currently tend to operate, and the second is an alternative paradigm, that we have labelled the 'iterative' paradigm, which draws explicitly on methodological issues in qualitative research to produce an alternative vision of ethics. We suggest that there is an urgent need to re-think the ways that ethical issues are conceptualised in NHS ethical procedures. In particular, we argue that embedded in the current paradigm is a restricted notion of 'quality', which frames how ethics are developed and worked through. Specific, pre-defined outcome measures are generally seen as the traditional marker of quality, which means that research questions that focus on processes rather than on 'outcomes' may be regarded as problematic. We show that the alternative 'iterative' paradigm offers a useful starting point for moving beyond these limited views. We conclude that a 'one size fits all' standardisation of ethical procedures and approach to ethical review acts against the production of knowledge about healthcare and dramatically restricts what can be

  14. Feasibility of rapid ethical assessment for the Ethiopian health research ethics review system.

    Science.gov (United States)

    Addissie, Adamu; Davey, Gail; Newport, Melanie; Farsides, Bobbie; Feleke, Yeweyenhareg

    2015-01-01

    One of the challenges in the process of ethical medical research in developing countries, including Ethiopia, is translating universal principles of medical ethics into appropriate informed consent documents and their implementation. Rapid Ethical Assessment (REA) has been suggested as a feasible approach to meet this application gap. In the past few years REA has been employed in few research project in Ethiopia and have been found to be a useful and practical approach. Feasibility assessment of REA for the Ethiopian research setting was conducted between 2012-2013 in order to inform the subsequent introduction of REA into research ethics review and governance system in the country. REA was found to be an appropriate, relevant and feasible venture. We argue that REA can be integrated as part of the ethics review and governance system in Ethiopia. REA tools and techniques are considered relevant and acceptable to the Ethiopian research community, with few practical challenges anticipated in their implementation. REA are considered feasible for integration in the Ethiopian ethics review system.

  15. Ethical Issues in Qualitative E-Learning Research

    Directory of Open Access Journals (Sweden)

    Heather Kanuka

    2007-06-01

    Full Text Available In the mid 1980s education researchers began exploring the use of the Internet within teaching and learning practices, now commonly referred to as e-learning. At the same time, many e-learning researchers were discovering that the application of existing ethical guidelines for qualitative research was resulting in confusion and uncertainty among both researchers and ethics review board members. Two decades later we continue to be plagued by these same ethical issues. On reflection on our research practices and examination of the literature on ethical issues relating to qualitative Internet- and Web-based research, the authors conclude that there are three main areas of confusion and uncertainty among researchers in the field of e-learning: (a participant consent, (b public versus private ownership, and (c confidentiality and anonymity.

  16. Ethics and Truth in Archival Research

    Science.gov (United States)

    Tesar, Marek

    2015-01-01

    The complexities of the ethics and truth in archival research are often unrecognised or invisible in educational research. This paper complicates the process of collecting data in the archives, as it problematises notions of ethics and truth in the archives. The archival research took place in the former Czechoslovakia and its turbulent political…

  17. The Ethics of Sports Medicine Research.

    Science.gov (United States)

    Stewart, Robert J; Reider, Bruce

    2016-04-01

    This article explores the background and foundations of ethics in research. Some important documents and codes are mentioned, such as The Belmont Report and the International Conference of Harmonisation. Some influential historical events involving research ethics are recounted. The article provides a detailed discussion of the Declaration of Helsinki, which is considered the international standard for guidelines in medical research ethics. The most salient features of the Declaration are described and related to orthopaedic surgery and sports medicine. Some of the most controversial aspects of the Declaration are discussed, which helps examine contentious areas of research in sports medicine. Copyright © 2016 Elsevier Inc. All rights reserved.

  18. Reporting ethics committee approval in public administration research.

    Science.gov (United States)

    Jordan, Sara R; Gray, Phillip W

    2014-03-01

    While public administration research is thriving because of increased attention to social scientific rigor, lingering problems of methods and ethics remain. This article investigates the reporting of ethics approval within public administration publications. Beginning with an overview of ethics requirements regarding research with human participants, I turn to an examination of human participants protections for public administration research. Next, I present the findings of my analysis of articles published in the top five public administration journals over the period from 2000 to 2012, noting the incidences of ethics approval reporting as well as funding reporting. In explicating the importance of ethics reporting for public administration research, as it relates to replication, reputation, and vulnerable populations, I conclude with recommendations for increasing ethics approval reporting in public administration research.

  19. Communicating Qualitative Research Study Designs to Research Ethics Review Boards

    Science.gov (United States)

    Ells, Carolyn

    2011-01-01

    Researchers using qualitative methodologies appear to be particularly prone to having their study designs called into question by research ethics or funding agency review committees. In this paper, the author considers the issue of communicating qualitative research study designs in the context of institutional research ethics review and offers…

  20. Human research ethics committees: examining their roles and practices.

    Science.gov (United States)

    Guillemin, Marilys; Gillam, Lynn; Rosenthal, Doreen; Bolitho, Annie

    2012-07-01

    Considerable time and resources are invested in the ethics review process. We present qualitative data on how human research ethics committee members and health researchers perceive the role and function of the committee. The findings are based on interviews with 34 Australian ethics committee members and 54 health researchers. Although all participants agreed that the primary role of the ethics committee was to protect participants, there was disagreement regarding the additional roles undertaken by committees. Of particular concern were the perceptions from some ethics committee members and researchers that ethics committees were working to protect the institution's interests, as well as being overprotective toward research participants. This has the potential to lead to poor relations and mistrust between ethics committees and researchers.

  1. Ethical issues in trauma-related research: a review.

    Science.gov (United States)

    Newman, Elana; Risch, Elizabeth; Kassam-Adams, Nancy

    2006-09-01

    ETHICAL DECISION-MAKING ABOUT TRAUMA-RELATED STUDIES requires a flexible approach that counters assumptions and biases about victims, assures a favorable ethical cost-benefit ratio, and promotes advancement of knowledge that can benefit survivors of traumatic stress. This paper reviews several ethical issues in the field of traumatic stress: benefit and risks in trauma-related research, whether trauma-related research poses unique risks and if so what those might be, informed consent and mandatory reporting, and supervision of trauma-related research. For each topic, we review potential ethical issues, summarize the research conducted thus far to inform ethical practice, and recommend future practice, research questions and policies to advance the field so that research on trauma can continue to be a win-win situation for all stakeholders in the research enterprise.

  2. Ethical Issues in Cross-Cultural Research

    Science.gov (United States)

    Honan, Eileen; Hamid, M. Obaidul; Alhamdan, Bandar; Phommalangsy, Phouvanh; Lingard, Bob

    2013-01-01

    The gap between theoretical expectations of research ethics as outlined in the bureaucratic processes associated with University Ethics Committees and the situated realities of students undertaking studies within their own sociocultural contexts is explored in this paper. In particular, the authors investigate differences in ethical norms and…

  3. Human Research Ethics Committees in Technical Universities

    NARCIS (Netherlands)

    Koepsell, D.R.; Brinkman, W.P.; Pont, S.C.

    2014-01-01

    Human research ethics has developed in both theory and practice mostly from experiences in medical research. Human participants, however, are used in a much broader range of research than ethics committees oversee, including both basic and applied research at technical universities. Although

  4. The Ethics of Traditional Chinese and Western Herbal Medicine Research: Views of Researchers and Human Ethics Committees in Australia

    Directory of Open Access Journals (Sweden)

    Caroline A. Smith

    2011-01-01

    Full Text Available Despite the growth of traditional Chinese medicine (TCM and western herbal medicine (WHM research in Australia, little is known about how ethics committees (HRECs assess the ethics of TCM or WHM research. The objectives of this study were to examine the experiences of TCM and WHM researchers and HRECs with the evaluation of ethics applications. Two cross-sectional surveys were undertaken of HRECs and TCM and WHM researchers in Australia. Anonymous self-completion questionnaires were administered to 224 HRECs and 117 researchers. A response confirming involvement in TCM or WHM research applications was received from 20 HRECs and 42 researchers. The most frequent ethical issues identified by HRECs related to herbal products including information gaps relating to mode of action of herbal medicines and safety when combining herbal ingredients. Researchers concurred that they were frequently requested to provide additional information on multiple aspects including safety relating to the side effects of herbs and herb-drug interactions. Overall adherence with the principles of ethical conduct was high among TCM and WHM researchers although our study did identify the need for additional information regarding assessment of risk and risk management.

  5. Internet research and ethics: transformative issues in nursing education research.

    Science.gov (United States)

    Mahon, Pamela Young

    2014-01-01

    As practice in the educational and clinical settings seeks to be evidence based, faculty are increasingly required to conduct research and publish the results to advance the science of our profession. The purpose of this article is to discuss transformative research ethics because Internet use is an increasing component of current research studies. How nurse educators can engage in research-utilizing methodologies inclusive of technology while adhering to ethical standards developed before the advance of the Internet is reviewed. Recommendations are cited to address the new questions that arise at institutional review board meetings resulting from potential ethical implications of using students or research participants in cyber space. © 2014.

  6. An overview on ethical considerations in stem cell research in Iran and ethical recommendations: A review

    Science.gov (United States)

    Farajkhoda, Tahmineh

    2017-01-01

    Conducting research on the stem cell lines might bring some worthy good to public. Human Stem Cells (hSCs) research has provided opportunities for scientific progresses and new therapies, but some complex ethical matters should be noticed to ensure that stem cell research is carried out in an ethically appropriate manner. The aim of this review article is to discuss the importance of stem cell research, code of ethics for stem cell research in Iran and ethical recommendation. Generation of stem cells for research from human embryo or adult stem cells, saving, maintenance and using of them are the main ethical, legal and jurisprudence concerns in Iran. Concerns regarding human reproduction or human cloning, breach of human dignity, genetic manipulation and probability of tumorogenisity are observed in adult/somatic stem cells. Destruction of embryo to generate stem cell is an important matter in Iran. In this regards, obtaining stem cell from donated frozen embryos through infertility treatment that would be discarded is an acceptable solution in Iran for generation of embryo for research. Ethical, legal, and jurisprudence strategies for using adult/somatic stem cells are determination of ownership of stem cells, trade prohibition of human body, supervision on bio banks and information of Oversight Committee on Stem Cell Research. Recommendations to handle ethical issues for conducting stem cell research are well-designed studies, compliance codes of ethics in biomedical research (specifically codes of ethics on stem cell research, codes of ethics on clinical trials studies and codes of ethics on animals studies), appropriate collaboration with ethics committees and respecting of rights of participants (including both of human and animal rights) in research. In addition, there is a necessity for extending global networks of bioethics for strengthening communications within organizations at both the regional and international level, strengthening legislation systems

  7. An overview on ethical considerations in stem cell research in Iran and ethical recommendations: A review.

    Science.gov (United States)

    Farajkhoda, Tahmineh

    2017-02-01

    Conducting research on the stem cell lines might bring some worthy good to public. Human Stem Cells (hSCs) research has provided opportunities for scientific progresses and new therapies, but some complex ethical matters should be noticed to ensure that stem cell research is carried out in an ethically appropriate manner. The aim of this review article is to discuss the importance of stem cell research, code of ethics for stem cell research in Iran and ethical recommendation. Generation of stem cells for research from human embryo or adult stem cells, saving, maintenance and using of them are the main ethical, legal and jurisprudence concerns in Iran. Concerns regarding human reproduction or human cloning, breach of human dignity, genetic manipulation and probability of tumorogenisity are observed in adult/somatic stem cells. Destruction of embryo to generate stem cell is an important matter in Iran. In this regards, obtaining stem cell from donated frozen embryos through infertility treatment that would be discarded is an acceptable solution in Iran for generation of embryo for research. Ethical, legal, and jurisprudence strategies for using adult/somatic stem cells are determination of ownership of stem cells, trade prohibition of human body, supervision on bio banks and information of Oversight Committee on Stem Cell Research. Recommendations to handle ethical issues for conducting stem cell research are well-designed studies, compliance codes of ethics in biomedical research (specifically codes of ethics on stem cell research, codes of ethics on clinical trials studies and codes of ethics on animals studies), appropriate collaboration with ethics committees and respecting of rights of participants (including both of human and animal rights) in research. In addition, there is a necessity for extending global networks of bioethics for strengthening communications within organizations at both the regional and international level, strengthening legislation systems

  8. Collaborative international research: ethical and regulatory issues pertaining to human biological materials at a South African institutional research ethics committee.

    Science.gov (United States)

    Sathar, Aslam; Dhai, Amaboo; van der Linde, Stephan

    2014-12-01

    Human Biological Materials (HBMs) are an invaluable resource in biomedical research. To determine if researchers and a Research Ethics Committee (REC) at a South African institution addressed ethical issues pertaining to HBMs in collaborative research with developed countries. Ethically approved retrospective cross-sectional descriptive audit. Of the 1305 protocols audited, 151 (11.57%) fulfilled the study's inclusion criteria. Compared to other developed countries, a majority of sponsors (90) were from the USA (p = 0.0001). The principle investigators (PIs) in all 151 protocols informed the REC of their intent to store HBMs. Only 132 protocols informed research participants (P ethical and regulatory issues pertaining to HBMs. There was a lack of congruence between the ethical guidelines of developed countries and their actions which are central to the access to HBMs in collaborative research. HBMs may be leaving South Africa without EPs and MTAs during the process of international collaborative research. © 2013 John Wiley & Sons Ltd.

  9. The Schizophrenia Patient Outcomes Research Team (PORT): updated treatment recommendations 2009.

    Science.gov (United States)

    Kreyenbuhl, Julie; Buchanan, Robert W; Dickerson, Faith B; Dixon, Lisa B

    2010-01-01

    The Schizophrenia Patient Outcomes Research Team (PORT) project has played a significant role in the development and dissemination of evidence-based practices for schizophrenia. In contrast to other clinical guidelines, the Schizophrenia PORT Treatment Recommendations, initially published in 1998 and first revised in 2003, are based primarily on empirical data. Over the last 5 years, research on psychopharmacologic and psychosocial treatments for schizophrenia has continued to evolve, warranting an update of the PORT recommendations. In consultation with expert advisors, 2 Evidence Review Groups (ERGs) identified 41 treatment areas for review and conducted electronic literature searches to identify all clinical studies published since the last PORT literature review. The ERGs also reviewed studies preceding 2002 in areas not covered by previous PORT reviews, including smoking cessation, substance abuse, and weight loss. The ERGs reviewed over 600 studies and synthesized the research evidence, producing recommendations for those treatments for which the evidence was sufficiently strong to merit recommendation status. For those treatments lacking empirical support, the ERGs produced parallel summary statements. An Expert Panel consisting of 39 schizophrenia researchers, clinicians, and consumers attended a conference in November 2008 in which consensus was reached on the state of the evidence for each of the treatment areas reviewed. The methods and outcomes of the update process are presented here and resulted in recommendations for 16 psychopharmacologic and 8 psychosocial treatments for schizophrenia. Another 13 psychopharmacologic and 4 psychosocial treatments had insufficient evidence to support a recommendation, representing significant unmet needs in important treatment domains.

  10. Ethics in Animal-Based Research.

    Science.gov (United States)

    Gross, Dominik; Tolba, René H

    2015-01-01

    In recent years, there have been a number of new demands and regulations which have reignited the discussion on ethics in animal-based research. In the light of this development, the present review first presents an overview of underlying core ethical questions and issues. This is followed by an outline of the current discussion on whether animals (used for experimentation) should have rights ascribed to them and whether animals need to have certain characteristics in order to be the beneficiaries of rights. The discourse on concepts of sentience and the 'sociozoological scale' in particular is mapped out in this regard. There follows an outline of relevant ethical positions and current moral approaches to animal-based research (animal rights position, utilitarianism, 'convergence position', intrinsic cultural value of fundamental research, 'contractarianism', anthropocentrism, principle of the three Rs). 2015 S. Karger AG, Basel.

  11. Ethics and the practice of qualitative research

    DEFF Research Database (Denmark)

    Shaw, Ian Frank

    2016-01-01

    Ethics and the practice of qualitative research? Qualitative Social Work 7 (4): 400-414. Reprinted......Ethics and the practice of qualitative research? Qualitative Social Work 7 (4): 400-414. Reprinted...

  12. Strangers at the Benchside: Research Ethics Consultation

    Science.gov (United States)

    Cho, Mildred K.; Tobin, Sara L.; Greely, Henry T.; McCormick, Jennifer; Boyce, Angie; Magnus, David

    2008-01-01

    Institutional ethics consultation services for biomedical scientists have begun to proliferate, especially for clinical researchers. We discuss several models of ethics consultation and describe a team-based approach used at Stanford University in the context of these models. As research ethics consultation services expand, there are many unresolved questions that need to be addressed, including what the scope, composition, and purpose of such services should be, whether core competencies for consultants can and should be defined, and how conflicts of interest should be mitigated. We make preliminary recommendations for the structure and process of research ethics consultation, based on our initial experiences in a pilot program. PMID:18570086

  13. Research Award: Advisory Committee on Research Ethics

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

    IDRC CRDI

    ACRE seeks a Research Awardee to study research ethics in an ... The following topics are examples of issues that could be ... advance their career goals, and recognize the dual nature of the position—applied research activity and general ...

  14. GETTING PERSONAL: ETHICS AND IDENTITY IN GLOBAL HEALTH RESEARCH

    Science.gov (United States)

    Simon, Christian; Mosavel, Maghboeba

    2011-01-01

    Researcher identity’ affects global health research in profound and complex ways. Anthropologists in particular have led the way in portraying the multiple, and sometimes tension-generating, identities that researchers ascribe to themselves, or have ascribed to them, in their places of research. However, the central importance of researcher identity in the ethical conduct of global health research has yet to be fully appreciated. The capacity of researchers to respond effectively to the ethical tensions surrounding their identities is hampered by lack of conceptual clarity, as to the nature and scope of the issues involved. This paper strives to provide some clarification of these ethical tensions by considering researcher identity from the perspective of (1) Guillemin and Heggen’s (2009) key distinction between procedural ethics and ethics in practice, and (2) our own distinction between perceptions of identity that are either symmetrical or asymmetrical, with the potential to shift research relationships toward greater or lesser ethical harmony. Discussion of these concepts is supported with ethnographic examples from relevant literature and from our own (United States (US) Government-funded) research in South Africa. A preliminary set of recommendations is provided in an effort to equip researchers with a greater sense of organization and control over the ethics of researcher identity. The paper concludes that the complex construction of researcher identity needs to be central among the ethical concerns of global health researchers, and that the conceptual tools discussed in the paper are a useful starting point for better organizing and acting on these ethical concerns. PMID:21426482

  15. Social Representations on ethical and bioethic aspects in research

    Directory of Open Access Journals (Sweden)

    Maísa Araujo Costa

    2017-03-01

    Full Text Available Objective: the study aims to analyze the social representations on the ethical and bioethical aspects in the research elaborated by academics of the Dentistry Course. Methods: it is a qualitative research based on the Theory of Social Representations carried out with 80 academics of the Dentistry course. The data were collected through a semi-structured interview script, processed in the IRaMuTeQ and analyzed by the Descending Hierarchical Classification. The study followed the ethical standards recommended by Resolution n. 466/2012, obtaining approval from the Ethics Committee of UNINOVAFAPI University Center. Results: The corpus analyzed in the study is composed of 79 units of initial context (UCI with use of 62%. The results are presented in four classes, namely: 4. The understanding of Ethics and Bioethics in research; 3. Researcher's social position; 1. Legal responsibilities of the researcher and 2. Normative aspects of research ethics - legal basis. Conclusion: Scholars represent ethical and bioethical aspects in research as essential to respect human dignity and protect the lives of research participants, with a focus on normative aspects of research ethics through Research Committees. Their attitudes are guided by their conditions of life, their beliefs and cultures of different social contexts. Keywords: Bioethics, ethics, social psychology.

  16. Assessment of relatedness between neurocan gene as bipolar disorder susceptibility locus and schizophrenia

    Directory of Open Access Journals (Sweden)

    Lilijana Oruč

    2012-11-01

    Full Text Available Large scale genetic association meta-analyses showed that neurocan (NCAN gene polymorphism rs1064395 is susceptibility locus for bipolar disorder. These studies also included patients with bipolar disorder originated from Bosnia and Herzegovina. Followed by theory of shared genetic elements between bipolar disorder and schizophrenia susceptibility, other studies explored several genetic factors with schizophrenia vulnerability as well. In this work, authors investigated the association between previously confirmed bipolar disorder genetic risk factor-neurocan with schizophrenia in a population sample of Bosnia and Herzegovina.Ethical aspects of this research were assessed by Ethics Committee of Clinical Center University of Sarajevo. Blood samples for DNA extraction were taken from the total of 86 patients and healthy individuals who previously signed informed consent. Genotyping for rs 1064395 was done using direct sequencing method. A case-control analysis of common genetic polymorphism within neurocan gene and schizophrenia status in a consecutively sampled patient cohort have been done using Fisher-exact test with odds-ratio calculation. No statistically significant allele and genotype association with disease status was found (p>0.05.Our finding supports the fact that large-scale genetic association studies approach need to be employed when detecting the variants with small additive effect in phenotypes with complex ethiology.

  17. State-of-the-Art Report on Ethics of Research Integrity

    International Nuclear Information System (INIS)

    Kwon, Hyuk; Hahn, K. W.; Nam, Y. M.; You, B. H.; Min, B. J.

    2006-04-01

    The report briefly considers the generous ethical issues such as the background of philosophy, the issues of research ethics, the research integrity, the role of citation, the program and the code of research ethics. The report introduces the background of philosophy of science and elements of research ethics. It also considers the precedents of misconduct in research ethics and the ingredients to preserve the research integrity. Especially, the citation with obscure boundary between proper citation and plagiarism is carefully explored through several examples. Finally, the domestic ethics conditions are investigated on the research integrity and educational program on the responsible conduct of research. To compare the domestic situation, the educational program and the system of research integrity in EU and USA are deeply searched in Ch. 6 and Appendix III and V. To develop an educational program of research ethics and integrity, Nuclear Training Centre(NTC) collects and arranges the material and resource for research ethics

  18. State-of-the-Art Report on Ethics of Research Integrity

    Energy Technology Data Exchange (ETDEWEB)

    Kwon, Hyuk; Hahn, K. W.; Nam, Y. M.; You, B. H.; Min, B. J

    2006-04-15

    The report briefly considers the generous ethical issues such as the background of philosophy, the issues of research ethics, the research integrity, the role of citation, the program and the code of research ethics. The report introduces the background of philosophy of science and elements of research ethics. It also considers the precedents of misconduct in research ethics and the ingredients to preserve the research integrity. Especially, the citation with obscure boundary between proper citation and plagiarism is carefully explored through several examples. Finally, the domestic ethics conditions are investigated on the research integrity and educational program on the responsible conduct of research. To compare the domestic situation, the educational program and the system of research integrity in EU and USA are deeply searched in Ch. 6 and Appendix III and V. To develop an educational program of research ethics and integrity, Nuclear Training Centre(NTC) collects and arranges the material and resource for research ethics.

  19. Reengineering Biomedical Translational Research with Engineering Ethics.

    Science.gov (United States)

    Sunderland, Mary E; Nayak, Rahul Uday

    2015-08-01

    It is widely accepted that translational research practitioners need to acquire special skills and knowledge that will enable them to anticipate, analyze, and manage a range of ethical issues. While there is a small but growing literature that addresses the ethics of translational research, there is a dearth of scholarship regarding how this might apply to engineers. In this paper we examine engineers as key translators and argue that they are well positioned to ask transformative ethical questions. Asking engineers to both broaden and deepen their consideration of ethics in their work, however, requires a shift in the way ethics is often portrayed and perceived in science and engineering communities. Rather than interpreting ethics as a roadblock to the success of translational research, we suggest that engineers should be encouraged to ask questions about the socio-ethical dimensions of their work. This requires expanding the conceptual framework of engineering beyond its traditional focus on "how" and "what" questions to also include "why" and "who" questions to facilitate the gathering of normative, socially-situated information. Empowering engineers to ask "why" and "who" questions should spur the development of technologies and practices that contribute to improving health outcomes.

  20. The ethics of research using electronic mail discussion groups.

    Science.gov (United States)

    Kralik, Debbie; Warren, Jim; Price, Kay; Koch, Tina; Pignone, Gino

    2005-12-01

    The aim of this paper is to identify and discuss the ethical considerations that have confronted and challenged the research team when researchers facilitate conversations using private electronic mail discussion lists. The use of electronic mail group conversations, as a collaborative data generation method, remains underdeveloped in nursing. Ethical challenges associated with this approach to data generation have only begun to be considered. As receipt of ethics approval for a study titled; 'Describing transition with people who live with chronic illness' we have been challenged by many ethical dilemmas, hence we believe it is timely to share the issues that have confronted the research team. These discussions are essential so we can understand the possibilities for research interaction, communication, and collaboration made possible by advanced information technologies. Our experiences in this study have increased our awareness for ongoing ethical discussions about privacy, confidentiality, consent, accountability and openness underpinning research with human participants when generating data using an electronic mail discussion group. We describe how we work at upholding these ethical principles focusing on informed consent, participant confidentiality and privacy, the participants as threats to themselves and one another, public-private confusion, employees with access, hackers and threats from the researchers. A variety of complex issues arise during cyberspace research that can make the application of traditional ethical standards troublesome. Communication in cyberspace alters the temporal, spatial and sensory components of human interaction, thereby challenging traditional ethical definitions and calling to question some basic assumptions about identity and ones right to keep aspects of it confidential. Nurse researchers are bound by human research ethics protocols; however, the nature of research by electronic mail generates moral issues as well as ethical

  1. An overview on ethical considerations in stem cell research in Iran and ethical recommendations: A review

    Directory of Open Access Journals (Sweden)

    Tahmineh Farajkhoda

    2017-08-01

    Full Text Available Conducting research on the stem cell lines might bring some worthy good to public. Human Stem Cells (hSCs research has provided opportunities for scientific progresses and new therapies, but some complex ethical matters should be noticed to ensure that stem cell research is carried out in an ethically appropriate manner. The aim of this review article is to discuss the importance of stem cell research, code of ethics for stem cell research in Iran and ethical recommendation. Generation of stem cells for research from human embryo or adult stem cells, saving, maintenance and using of them are the main ethical, legal and jurisprudence concerns in Iran. Concerns regarding human reproduction or human cloning, breach of human dignity, genetic manipulation and probability of tumorogenisity are observed in adult/somatic stem cells. Destruction of embryo to generate stem cell is an important matter in Iran. In this regards, obtaining stem cell from donated frozen embryos through infertility treatment that would be discarded is an acceptable solution in Iran for generation of embryo for research. Ethical, legal, and jurisprudence strategies for using adult/somatic stem cells are determination of ownership of stem cells, trade prohibition of human body, supervision on bio banks and information of Oversight Committee on Stem Cell Research. Recommendations to handle ethical issues for conducting stem cell research are well-designed studies, compliance codes of ethics in biomedical research (specifically codes of ethics on stem cell research, codes of ethics on clinical trials studies and codes of ethics on animals studies, appropriate collaboration with ethics committees and respecting of rights of participants (including both of human and animal rights in research. In addition, there is a necessity for extending global networks of bioethics for strengthening communications within organizations at both the regional and international level, strengthening

  2. Ethical issues in research with homeless youths.

    Science.gov (United States)

    Ensign, Josephine; Ammerman, Seth

    2008-05-01

    This paper is a report of a study to document researcher, healthcare provider and programme administrators' experiences with ethical issues in research with homeless youths in North America. While there are legal and ethical guidelines for research with adolescents and with vulnerable populations in general, there are no specific guidelines for the ethical conduct of research with homeless youths. Using a web-based questionnaire, healthcare and social service providers, programme administrators and researchers working with homeless young people throughout the United States of America and Canada were surveyed in 2005. The survey group consisted of 120 individuals; a total of 72 individuals completed the survey. Survey questions included experiences with using incentives in research with homeless youths, consent and experiences with ethics review boards. Numerical data were analysed using frequencies and cross-tabulations. Text data were analysed qualitatively. Researchers doing mental health and/or substance use research tended to use money as a research incentive, whereas healthcare providers and programme administrators tended to use non-monetary incentives. The majority of respondents reported using written consent for research from homeless youths, including minors. Respondents reporting difficulties with ethics review boards were mainly involved with intervention research. Consensus is needed from a variety of stakeholders, including homeless youths and service providers, on use of various types of research incentives for different types of research, as well as use of consent for homeless youths who are minors.

  3. Incorporating ethical principles into clinical research protocols: a tool for protocol writers and ethics committees.

    Science.gov (United States)

    Li, Rebecca H; Wacholtz, Mary C; Barnes, Mark; Boggs, Liam; Callery-D'Amico, Susan; Davis, Amy; Digilova, Alla; Forster, David; Heffernan, Kate; Luthin, Maeve; Lynch, Holly Fernandez; McNair, Lindsay; Miller, Jennifer E; Murphy, Jacquelyn; Van Campen, Luann; Wilenzick, Mark; Wolf, Delia; Woolston, Cris; Aldinger, Carmen; Bierer, Barbara E

    2016-04-01

    A novel Protocol Ethics Tool Kit ('Ethics Tool Kit') has been developed by a multi-stakeholder group of the Multi-Regional Clinical Trials Center of Brigham and Women's Hospital and Harvard. The purpose of the Ethics Tool Kit is to facilitate effective recognition, consideration and deliberation of critical ethical issues in clinical trial protocols. The Ethics Tool Kit may be used by investigators and sponsors to develop a dedicated Ethics Section within a protocol to improve the consistency and transparency between clinical trial protocols and research ethics committee reviews. It may also streamline ethics review and may facilitate and expedite the review process by anticipating the concerns of ethics committee reviewers. Specific attention was given to issues arising in multinational settings. With the use of this Tool Kit, researchers have the opportunity to address critical research ethics issues proactively, potentially speeding the time and easing the process to final protocol approval. 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/

  4. Giving voice to study volunteers: comparing views of mentally ill, physically ill, and healthy protocol participants on ethical aspects of clinical research.

    Science.gov (United States)

    Roberts, Laura Weiss; Kim, Jane Paik

    2014-09-01

    Ethical controversy surrounds clinical research involving seriously ill participants. While many stakeholders have opinions, the extent to which protocol volunteers themselves see human research as ethically acceptable has not been documented. To address this gap of knowledge, authors sought to assess views of healthy and ill clinical research volunteers regarding the ethical acceptability of human studies involving individuals who are ill or are potentially vulnerable. Surveys and semi-structured interviews were used to query clinical research protocol participants and a comparison group of healthy individuals. A total of 179 respondents participated in this study: 150 in protocols (60 mentally ill, 43 physically ill, and 47 healthy clinical research protocol participants) and 29 healthy individuals not enrolled in protocols. Main outcome measures included responses regarding ethical acceptability of clinical research when it presents significant burdens and risks, involves people with serious mental and physical illness, or enrolls people with other potential vulnerabilities in the research situation. Respondents expressed decreasing levels of acceptance of participation in research that posed burdens of increasing severity. Participation in protocols with possibly life-threatening consequences was perceived as least acceptable (mean = 1.82, sd = 1.29). Research on serious illnesses, including HIV, cancer, schizophrenia, depression, and post-traumatic stress disorder, was seen as ethically acceptable across respondent groups (range of means = [4.0, 4.7]). Mentally ill volunteers expressed levels of ethical acceptability for physical illness research and mental illness research as acceptable and similar, while physically ill volunteers expressed greater ethical acceptability for physical illness research than for mental illness research. Mentally ill, physically ill, and healthy participants expressed neutral to favorable perspectives regarding the ethical

  5. Experiential Learning and Research Ethics: Enhancing Knowledge through Action

    Science.gov (United States)

    Teixeira-Poit, Stephanie M.; Cameron, Abigail E.; Schulman, Michael D.

    2011-01-01

    How can instructors use experiential learning strategies to enhance student understanding of research ethics and responsible research conduct? In this article, the authors review literature on using experiential learning to teach research ethics and responsible research conduct. They present a three-step exercise for teaching research ethics and…

  6. 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.

  7. Ethics and the ethnography of medical research in Africa

    Science.gov (United States)

    Molyneux, Sassy; Geissler, P. Wenzel

    2008-01-01

    The ethics of medical research have grown as an area of expertise and debate in recent years, with two broad approaches emerging in relation to transnational research: (1) the refinement of guidelines and strengthening of review, processes primarily to protect the right of individual research participants and strengthen interpersonal relations at the micro-level; and (2) considering more centrally, as crucial ethical concerns, the wider interests of whole populations, the functioning of research institutions, the processes of collaboration, and the ethics of inequitable international relations. We see the two areas of debate and action as complementary, and believe that social science conducted in and around transnational medical research environments can bring these two perspectives together in a more ‘situated ethics’ of research. To explore this idea for medical research in Africa, we organized a conference in December 2005 in Kilifi, Kenya. In this introduction we outline the two emerging approaches to medical ethics, summarise each of seven papers selected from the conference for inclusion in this special issue on ethics and ethnography, and finally highlight two areas of lively debate at the conference itself: the appropriateness and value of ethics guidelines and review boards for medical research; and the ethical review of social science research. Together, the papers and debates point to the importance of focusing on the ethics of relationships and on justice in both biomedicine and social science research, and on giving greater voice and visibility to the field staff who often play a crucial and under-supported role in ‘doing ethics’ in the field. They also point to the potential value of social science research on the range of relationships operating at different levels and time scales in medical research, including those surrounding community engagement activities, and the role and functioning of ethics review boards. We conclude by highlighting

  8. Ethics Research in Environmental Education | Jickling | Southern ...

    African Journals Online (AJOL)

    This paper takes a research orientation towards ethics and, in so doing, frames ethics as processes of inquiry and stories to be told. First, it explores ways that ethics might be 'reimagined', situated in everyday contexts and interpreted in ways that allow its stories to do work and invite readers and listeners to consider ethics.

  9. Taking stock of the ethical foundations of international health research: pragmatic lessons from the IU-Moi Academic Research Ethics Partnership.

    Science.gov (United States)

    Meslin, Eric M; Were, Edwin; Ayuku, David

    2013-09-01

    It is a sine qua non that research and health care provided in international settings raise profound ethical questions when different cultural and political values are implicated. Yet ironically, as international health research expands and as research on ethical issues in international health research broadens and deepens, we appear to have moved away from discussing the moral foundations of these activities. For international health research to thrive and lead to the kind of benefits it is capable of, it is helpful to occasionally revisit the foundational premises that justify the enterprise as a whole. We draw on the experience of the Indiana University-Moi University Academic Research Ethics Partnership, an innovative bioethics training program co-located in Indianapolis and Eldoret, Kenya to highlight the changing nature of ethical issues in international health research and the ongoing practical challenges.

  10. Research Ethics: Institutional Review Board Oversight of Art Therapy Research

    Science.gov (United States)

    Deaver, Sarah P.

    2011-01-01

    By having their research proposals reviewed and approved by Institutional Review Boards (IRBs), art therapists meet important ethical principles regarding responsibility to research participants. This article provides an overview of the history of human subjects protections in the United States; underlying ethical principles and their application…

  11. Ethical evaluation of research proposals by ethics panels advising the European Commission.

    Science.gov (United States)

    Kolar, Roman

    2004-06-01

    Ethical principles with regard to animal experimentation are referred to in European Union (EU) legislation and other official documents. Therefore, applications for funding of research under the EU's research programme may undergo an ethical review that is carried out by so-called ethics panels, consisting of experts chosen by the European Commission. The work of these panels differs substantially from that of other ethical committees, as they exist on the institutional, local, regional or national level. Their main purpose is not to decide whether a proposed research can be regarded legal, and therefore should be endorsed or licensed; instead, it is to help the Commission in prioritising its funding. The panels may examine other ethical aspects than those of animal experimentation or animal welfare alone, such as the use of human volunteers. This is reflected by the composition of the panels. Their decisions are normally based on consensus. Even though these decisions may refer to EU legislation, the criteria applied are not restricted to those provided by this legislation. Nevertheless, the various aspects of the Commission's ethical evaluation system (e.g. formal and practical basic conditions, information content of applications, type of decisions taken, lacking of any quality control) offers opportunities for improvement.

  12. Ethical issues in neonatal research involving human subjects.

    Science.gov (United States)

    Fleischman, Alan R

    2016-06-01

    Research involving critically ill neonates creates many ethical challenges. Neonatal clinical research has always been hard to perform, is very expensive, and may generate some unique ethical concerns. This article describes some examples of historical and modern controversies in neonatal research, discusses the justification for research involving such vulnerable and fragile patients, clarifies current federal regulations that govern research involving neonates, and suggests ways that clinical investigators can develop and implement ethically grounded human subjects research. Copyright © 2016 Elsevier Inc. All rights reserved.

  13. Ethical issues in action-oriented research in Indonesia.

    Science.gov (United States)

    Rachmawaty, Rini

    2017-09-01

    Action-oriented research is one of the most frequent research types implemented to transform community health in Indonesia. Three researchers and 11 graduate students from a developed country in East Asia conducted a fieldwork program in a remote area in South Sulawesi Province. Although the project was completed, whether or not the international standards for human subject research were applied into that study remains unclear. This study aimed to examine ethical issues raised from that case, analyze constraints to the problems, and recommend alternatives to protect vulnerable populations from being exploited by local/international researchers. A problem-solving approach was used in this study. It began with problem identification, evaluation of the action-oriented research goal, investigation of the constraints to the problem, and recommendation of some relevant alternatives to address the central issue. Ethical Consideration: The approval for conducting the action-oriented research that being investigated in this work was only obtained from the Head of local district. Some ethical issues were found in this case. No special protection for this population, no informed consent was obtained from the participants, exposure to social and economic risks, no future benefits for the subjects, and conflict of interests. Lack of control from the local research ethics committee and lack of competence of local researchers on human subject research were considered as the constraints to the problems. Creating an independent research ethics committee, providing research ethics training to the local researchers, obtaining written/video consents from underserved populations, and meeting local health needs were recommended alternatives to solve these problems. Indonesian government bodies should reform their international collaborative system on research involving human subjects. Exploitation may not occur if all participants as well as all local and national governing bodies

  14. Regulations and Ethical Considerations for Astronomy Education Research III: A Suggested Code of Ethics

    Science.gov (United States)

    Brogt, Erik; Foster, Tom; Dokter, Erin; Buxner, Sanlyn; Antonellis, Jessie

    2009-01-01

    We present an argument for, and suggested implementation of, a code of ethics for the astronomy education research community. This code of ethics is based on legal and ethical considerations set forth by U.S. federal regulations and the existing code of conduct of the American Educational Research Association. We also provide a fictitious research…

  15. An ethic of analysis: an argument for critical analysis of research interviews as an ethical practice.

    Science.gov (United States)

    Cloyes, Kristin Gates

    2006-01-01

    Nursing literature is replete with discussions about the ethics of research interviews. These largely involve questions of method, and how careful study design and data collection technique can render studies more ethical. Analysis, the perennial black box of the research process, is rarely discussed as an ethical practice. In this paper, I introduce the idea that analysis itself is an ethical practice. Specifically, I argue that political discourse analysis of research interviews is an ethical practice. I use examples from my own research in a prison control unit to illustrate what this might look like, and what is at stake.

  16. Getting the justification for research ethics review right.

    Science.gov (United States)

    Dunn, Michael

    2013-08-01

    Dyck and Allen claim that the current model for mandatory ethical review of research involving human participants is unethical once the harms that accrue from the review process are identified. However, the assumptions upon which the authors assert that this model of research ethics governance is justified are false. In this commentary, I aim to correct these assumptions, and provide the right justificatory account of the requirement for research ethics review. This account clarifies why the subsequent arguments that Dyck and Allen make in the paper lack force, and why the 'governance problem' in research ethics that they allude to ought to be explained differently.

  17. Ethical responsibilities in nursing: research findings and issues.

    Science.gov (United States)

    Cassidy, V R

    1991-01-01

    Discussions in the literature assert that nurses are becoming increasingly cognizant of their ethical responsibilities, but that they are often ill prepared to participate in ethical decision making. A review of selected research literature from 1970 to 1987 was undertaken to validate these assertions. A total of 12 studies related to ethical responsibilities was identified in the review; all studies were published between 1980 and 1987. The majority of studies were at the descriptive and exploratory levels and employed Kohlberg's cognitive theory of moral development as their conceptual framework. Significant findings related to educational level and ethical responsibilities were consistent across studies. Findings related to age and clinical experience were mixed; the effects of economic level, religion-religiosity, ethnicity, and other variables on ethical responsibilities were not significant. Issues raised in the light of the existing research include the use of Kohlberg's theory as a conceptual orientation in nursing groups and limited data on the reliability and validity of instruments used in measuring ethical constructs. Recommendations for future research on ethical responsibilities include the validation of Kohlberg's theory for nursing investigations, exploration of other frameworks for developing a multidimensional view of ethical responsibilities, and the use of qualitative research designs.

  18. Innovations in research ethics governance in humanitarian settings.

    Science.gov (United States)

    Schopper, Doris; Dawson, Angus; Upshur, Ross; Ahmad, Aasim; Jesani, Amar; Ravinetto, Raffaella; Segelid, Michael J; Sheel, Sunita; Singh, Jerome

    2015-02-26

    Médecins Sans Frontières (MSF) is one of the world's leading humanitarian medical organizations. The increased emphasis in MSF on research led to the creation of an ethics review board (ERB) in 2001. The ERB has encouraged innovation in the review of proposals and the interaction between the ERB and the organization. This has led to some of the advances in ethics governance described in this paper. We first update our previous work from 2009 describing ERB performance and then highlight five innovative practices: • A new framework to guide ethics review • The introduction of a policy exempting a posteriori analysis of routinely collected data • The preapproval of "emergency" protocols • General ethical approval of "routine surveys" • Evaluating the impact of approved studies. The new framework encourages a conversation about ethical issues, rather than imposing quasi-legalistic rules, is more engaged with the specific MSF research context and gives greater prominence to certain values and principles. Some of the innovations implemented by the ERB, such as review exemption or approval of generic protocols, may run counter to many standard operating procedures. We argue that much standard practice in research ethics review ought to be open to challenge and revision. Continued interaction between MSF researchers and independent ERB members has allowed for progressive innovations based on a trustful and respectful partnership between the ERB and the researchers. In the future, three areas merit particular attention. First, the impact of the new framework should be assessed. Second, the impact of research needs to be defined more precisely as a first step towards being meaningfully assessed, including changes of impact over time. Finally, the dialogue between the MSF ERB and the ethics committees in the study countries should be enhanced. We hope that the innovations in research ethics governance described may be relevant for other organisations carrying out

  19. Ethics by opinion poll? The functions of attitudes research for normative deliberations in medical ethics.

    Science.gov (United States)

    Salloch, Sabine; Vollmann, Jochen; Schildmann, Jan

    2014-09-01

    Empirical studies on people's moral attitudes regarding ethically challenging topics contribute greatly to research in medical ethics. However, it is not always clear in which ways this research adds to medical ethics as a normative discipline. In this article, we aim to provide a systematic account of the different ways in which attitudinal research can be used for normative reflection. In the first part, we discuss whether ethical judgements can be based on empirical work alone and we develop a sceptical position regarding this point, taking into account theoretical, methodological and pragmatic considerations. As empirical data should not be taken as a direct source for normative justification, we then delineate different ways in which attitudes research can be combined with theoretical accounts of normative justification in the second part of the article. Firstly, the combination of attitudes research with normative-ethical theories is analysed with respect to three different aspects: (a) The extent of empirical data which is needed, (b) the question of which kind of data is required and (c) the ways in which the empirical data are processed within the framework of an ethical theory. Secondly, two further functions of attitudes research are displayed which lie outside the traditional focus of ethical theories: the exploratory function of detecting and characterising new ethical problems, and the field of 'moral pragmatics'. The article concludes with a methodological outlook and suggestions for the concrete practice of attitudinal research in medical ethics. 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.

  20. Research Award: Advisory Committee on Research Ethics Deadline ...

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

    Jean-Claude Dumais

    2012-09-12

    Sep 12, 2012 ... Research Award: Advisory Committee on Research Ethics. Deadline: ... The Research Awardee will spend one year at IDRC and work approximately 50% of the time on her/his own research and 50% on ACRE-related tasks.

  1. Trends in nursing ethics research: Mapping the literature production.

    Science.gov (United States)

    Blažun Vošner, Helena; Železnik, Danica; Kokol, Peter; Vošner, Janez; Završnik, Jernej

    2017-12-01

    There have been a number of debates in the field of nursing ethics. Researchers have focused on various aspects of nursing ethics, such as professional ethics, professional, nursing and ethical values. Within this research, a variety of literature reviews have been conducted, but to the best of our knowledge, bibliometric mapping has not yet been used. This article aims to analyse the production of literature within nursing ethics research. In order to examine publishing patterns, we focused on publishing dynamics, prolific research entities and the most-cited articles. We additionally visualised the content of the literature using a novel mixed-method approach, combining bibliometric analysis and mapping with thematic analysis. Ethical considerations: In our study, ethical review was not required. A total of 1416 information sources were found in the Scopus database. Overall, literature production has increased; however, in recent years, the quantity of published material has begun to decrease. The most prolific countries are the United States, the United Kingdom and Canada, and the most prolific source titles are Nursing Ethics, Journal of Advanced Nursing and Nursing Times. Lately, research in the field of nursing ethics has been focused more on life care (providing for the basic needs of older residents), moral distress and community nursing. The dynamics of research literature production showed an exponential rise in the number of published information sources - a rise which started in the period between 1974 and 1998. Since that period, the trend has stabilised, which might indicate that nursing ethics research is starting a transition to a mature phase. The innovative use of bibliometric analysis and mapping, together with thematic analysis, is a useful tool for analysis of research production in the field of nursing ethics. The results presented can be an excellent starting point for literature reviews and more exhaustive data, information and knowledge

  2. Real-time Responsiveness for Ethics Oversight During Disaster Research.

    Science.gov (United States)

    Eckenwiler, Lisa; Pringle, John; Boulanger, Renaud; Hunt, Matthew

    2015-11-01

    Disaster research has grown in scope and frequency. Research in the wake of disasters and during humanitarian crises--particularly in resource-poor settings--is likely to raise profound and unique ethical challenges for local communities, crisis responders, researchers, and research ethics committees (RECs). Given the ethical challenges, many have questioned how best to provide research ethics review and oversight. We contribute to the conversation concerning how best to ensure appropriate ethical oversight in disaster research and argue that ethical disaster research requires of researchers and RECs a particular sort of ongoing, critical engagement which may not be warranted in less exceptional research. We present two cases that typify the concerns disaster researchers and RECs may confront, and elaborate upon what this ongoing engagement might look like--how it might be conceptualized and utilized--using the concept of real-time responsiveness (RTR). The central aim of RTR, understood here as both an ethical ideal and practice, is to lessen the potential for research conducted in the wake of disasters to create, perpetuate, or exacerbate vulnerabilities and contribute to injustices suffered by disaster-affected populations. Well cultivated and deployed, we believe that RTR may enhance the moral capacities of researchers and REC members, and RECs as institutions where moral agency is nurtured and sustained. © 2015 John Wiley & Sons Ltd.

  3. Analytical and ethical complexities in video game research

    DEFF Research Database (Denmark)

    Andersen, Mads Lund; Chimiri, Niklas Alexander; Søndergaard, Dorte Marie

    Session: Sociomaterial complexities in digital-analog spaces Abstract: Analytical and ethical complexities in video game research A central issue that video game research seldom explicitly articulates is the ethical complexities involved in its empirical and analytical work. The presentation...... explores common research questions posed and analytical foci chosen by video game researchers subscribing to either the media effects tradition, represented by (ref.) or to interdisciplinary Game Studies. Both fields, which tend to depict themselves as polar-opposites, build on ethical assumptions...... of theoretical or analytical arrogance. The relevance of acknowledging and situating ethical complexity becomes pertinent when alternatively taking a sociomaterial perspective on doing empirical and analytical work on video gaming. From an agential realist point of view, for instance, a researcher...

  4. Phronesis: Beyond the Research Ethics Committee-A Crucial Decision-Making Skill for Health Researchers During Community Research.

    Science.gov (United States)

    Greeff, Minrie; Rennie, Stuart

    2016-04-01

    Health researchers conducting research in the community are often faced with unanticipated ethical issues that arise in the course of their research and that go beyond the scope of ethical approval by the research ethics committee. Eight expert researchers were selected through extreme intensity purposive sampling, because they are representative of unusual manifestations of the phenomenon related to their research in the community. They were selected to take part in a semi-structured focus group discussion on whether practical wisdom (phronesis) is used as a decision-making skill to solve unanticipated ethical issues during research in the community. Although the researchers were not familiar with the concept phronesis, it became obvious that it formed an integral part of their everyday existence and decision making during intervention research. They could balance research ethics with practical considerations. The capacity of practical wisdom as a crucial decision-making skill should be assimilated into a researcher's everyday reality, and also into the process of mentoring young researchers to become phronimos. Researchers should be taught this skill to handle unanticipated ethical issues. © The Author(s) 2016.

  5. Towards an ethics safe harbor for global biomedical research

    Science.gov (United States)

    Dove, Edward S.; Knoppers, Bartha M.; Zawati, Ma'n H.

    2014-01-01

    Although increasingly global, data-driven genomics and other ‘omics’-focused research hold great promise for health discoveries, current research ethics review systems around the world challenge potential improvements in human health from such research. To overcome this challenge, we propose a ‘Safe Harbor Framework for International Ethics Equivalency’ that facilitates the harmonization of ethics review of specific types of data-driven international research projects while respecting globally transposable research ethics norms and principles. The Safe Harbor would consist in part of an agency supporting an International Federation for Ethics Review (IFER), formed by a voluntary compact among countries, granting agencies, philanthropies, institutions, and healthcare, patient advocacy, and research organizations. IFER would be both a central ethics review body, and also a forum for review and follow-up of policies concerning ethics norms for international research projects. It would be built on five principle elements: (1) registration, (2) compliance review, (3) recognition, (4) monitoring and enforcement, and (5) public participation. The Safe Harbor would create many benefits for researchers, countries, and the general public, and may eventually have application beyond (gen)omics to other areas of biomedical research that increasingly engage in secondary use of data and present only negligible risks. PMID:27774154

  6. Ethical assessment of research protocols: the experience of the Research Ethics Committee of the Hospital Israelita Albert Einstein (HIAE

    Directory of Open Access Journals (Sweden)

    Sonia Maria Oliveira de Barros

    2005-03-01

    Full Text Available This is a review article on the origin of the ethical analysis ofresearch protocols, the Brazilian and International legislation,including the Research Ethics Committee of Hospital IsraelitaAlbert Einstein. Since 1997, when the Committee was validatedits role has been recognized as that of a consultant and educator,participating on local and national scientific events andcollaborating with researchers in order to improve their projectsand learn to recognize ethical dilemmas in their protocols.

  7. Ethical review from the inside: repertoires of evaluation in Research Ethics Committee meetings

    NARCIS (Netherlands)

    de Jong, Jean Philippe; van Zwieten, Myra C. B.; Willems, Dick L.

    2012-01-01

    Evaluating the practice of ethical review by Research Ethics Committees (REC) could help protect the interests of human participants and promote scientific progress. To facilitate such evaluations, we conducted an ethnographic study of how an REC reviews research proposals during its meetings. We

  8. Sewage epidemiology and illicit drug research: the development of ethical research guidelines.

    Science.gov (United States)

    Prichard, Jeremy; Hall, Wayne; de Voogt, Pim; Zuccato, Ettore

    2014-02-15

    To discuss the need to develop ethical guidelines for researchers using sewage epidemiology to monitor drug use in the general population and specific precincts, including prisons, schools and workplaces. Describe current applications of sewage epidemiology, identify potential ethical risks associated with this science, and identify key means by which these risks may be mitigated through proportionate ethical guidance that allows this science to be fully developed. A rapidly advancing field of research is sewage epidemiology (SE) - the analysis of wastewater samples to monitor illicit drug use and other substances. Typically this research involves low ethical risks because individual participants cannot be identified and, consequently, review has been waived by human research ethics committees. In the absence of such oversight, ethical research guidelines are recommended for SE teams, peer reviewers and journal editors; guidelines will assist them to mitigate any risks in general population studies and studies of prisons, schools and workplaces. Potential harms include the stigmatisation of participants and, in the prison setting, austere policy responses to SE data that impact negatively upon inmate-participants. The risk of harm can be managed through research planning, awareness of the socio-political context in which results will be interpreted (or, in the case of media, sensationalised) and careful relations with industry partners. Ethical guidelines should be developed in consultation with SE scholars and be periodically amended. They should include publication processes that safeguard scientific rigour and be promulgated through existing research governance structures. Guidelines will assist to promote an ethical research culture among SE teams and scholars involved in the publication process and this will work to protect the reputation of the field. Copyright © 2014 Elsevier B.V. All rights reserved.

  9. Early-career researchers' views on ethical dimensions of patient engagement in research.

    Science.gov (United States)

    Bélisle-Pipon, Jean-Christophe; Rouleau, Geneviève; Birko, Stanislav

    2018-03-07

    Increasing attention and efforts are being put towards engaging patients in health research, and some have even argued that patient engagement in research (PER) is an ethical imperative. Yet there is relatively little empirical data on ethical issues associated with PER. A three-round Delphi survey was conducted with a panel of early-career researchers (ECRs) involved in PER. One of the objectives was to examine the ethical dimensions of PER as well as ECRs' self-perceived level of preparedness to conduct PER ethically. The study was conducted among awardees of the Québec SPOR-SUPPORT Unit in Canada, who represent the next generation of researchers involved in PER. Many themes were addressed throughout the study, such as definition, values, patients' roles, expected characteristics of patients, and anticipated challenges (including ethical issues). Open-ended questions were used, and all quantitative data were collected through statements using 7-point Likert scales. Between April and November 2016, 25 ECRs were invited to participate; 18 completed both the first and second rounds, and 16 completed the third round. Panelists consisted of nine women and seven men with various backgrounds (general practitioners and postgraduate students). The majority were between 25 and 44 years old. Panelists' responses showed PER raises important ethical issues: 1) professionalization of patients involved in research (with risks of patients becoming less representative); 2) adequate remuneration of patients; 3) fair recognition of patients' experiential knowledge; and 4) tokenism (engaging patients only for symbolic appeal). While the panelists felt moderately prepared to confront these ethical issues, they reported being uncomfortable applying for an ethics certificate for a PER project. If PER is an ethical imperative, it is vital to establish clear ethical standards and to train and support the PER community to identify and resolve ethical issues. Despite their overall

  10. Ethical implications for clinical practice and future research in "at risk" individuals.

    Science.gov (United States)

    Singh, Fiza; Mirzakhanian, Heline; Fusar-Poli, Paolo; de la Fuente-Sandoval, Camilo; Cadenhead, Kristin S

    2012-01-01

    The last 15 years have witnessed a shift in schizophrenia research with increasing interest in earlier stages of illness with the hope of early intervention and ultimately prevention of psychotic illness. Large-scale longitudinal studies have identified clinical and biological risk factors associated with increased risk of psychotic conversion, which together with symptomatic and demographic risk factors may improve the power of prediction algorithms for psychotic transition. Despite these advances, 45-70% of at risk subjects in most samples do not convert to frank psychosis, but continue to function well below their age matched counterparts. The issue is of utmost importance in light of the upcoming DSM-V and the possible inclusion of the attenuated psychotic symptoms syndrome (APSS) diagnosis, with clinical and ethical implications. Clinical considerations include feasibility of reliably diagnosing the at risk state in non-academic medical centers, variable psychotic conversion rates, a non-uniform definition of conversion and extensive debate about treatment for individuals with an ill-defined outcome. On the ethical side, diagnosing APSS could lead to unnecessary prescribing of antipsychotics with long-term deleterious consequences, slow research by providing a false sense of comfort in the diagnosis, and have psychosocial implications for those who receive a diagnosis. Thus it may be prudent to engage at risk populations early and to use broad-spectrum treatments with low risk benefit ratios to relieve functional impairments, while simultaneously studying all subsets of the at risk population.

  11. Ethical conduct for research : a code of scientific ethics

    Science.gov (United States)

    Marcia Patton-Mallory; Kathleen Franzreb; Charles Carll; Richard Cline

    2000-01-01

    The USDA Forest Service recently developed and adopted a code of ethical conduct for scientific research and development. The code addresses issues related to research misconduct, such as fabrication, falsification, or plagiarism in proposing, performing, or reviewing research or in reporting research results, as well as issues related to professional misconduct, such...

  12. Social Cognition in Schizophrenia: An NIMH Workshop on Definitions, Assessment, and Research Opportunities

    Science.gov (United States)

    Green, Michael F.; Penn, David L.; Bentall, Richard; Carpenter, William T.; Gaebel, Wolfgang; Gur, Ruben C.; Kring, Ann M.; Park, Sohee; Silverstein, Steven M.; Heinssen, Robert

    2008-01-01

    Social cognition has become a high priority area for the study of schizophrenia. However, despite developments in this area, progress remains limited by inconsistent terminology and differences in the way social cognition is measured. To address these obstacles, a consensus-building meeting on social cognition in schizophrenia was held at the National Institute of Mental Health in March 2006. Agreement was reached on several points, including definitions of terms, the significance of social cognition for schizophrenia research, and suggestions for future research directions. The importance of translational interdisciplinary research teams was emphasized. The current article presents a summary of these discussions. PMID:18184635

  13. 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.

  14. The history of ethics in research with human subjects

    OpenAIRE

    Kottow, Miguel

    2008-01-01

    This article contextualizes the emergence of the field of research ethics in historical, social, and political events over the last 60 years. It draws a distinction between professional ethics and bioethics, focusing on the historical and philosophical precedents of the latter field. It also presents the appearance of research ethics as a result of the disclosure of cases of scientific misconduct, discussing the first regulations on research ethics, the guidelines contained in the Belmont Rep...

  15. Beyond Compliance Checking: A Situated Approach to Visual Research Ethics.

    Science.gov (United States)

    Lenette, Caroline; Botfield, Jessica R; Boydell, Katherine; Haire, Bridget; Newman, Christy E; Zwi, Anthony B

    2018-03-19

    Visual research methods like photography and digital storytelling are increasingly used in health and social sciences research as participatory approaches that benefit participants, researchers, and audiences. Visual methods involve a number of additional ethical considerations such as using identifiable content and ownership of creative outputs. As such, ethics committees should use different assessment frameworks to consider research protocols with visual methods. Here, we outline the limitations of ethics committees in assessing projects with a visual focus and highlight the sparse knowledge on how researchers respond when they encounter ethical challenges in the practice of visual research. We propose a situated approach in relation to visual methodologies that encompasses a negotiated, flexible approach, given that ethical issues usually emerge in relation to the specific contexts of individual research projects. Drawing on available literature and two case studies, we identify and reflect on nuanced ethical implications in visual research, like tensions between aesthetics and research validity. The case studies highlight strategies developed in-situ to address the challenges two researchers encountered when using visual research methods, illustrating that some practice implications are not necessarily addressed using established ethical clearance procedures. A situated approach can ensure that visual research remains ethical, engaging, and rigorous.

  16. A Scoping Study on the Ethics of Health Systems Research.

    Science.gov (United States)

    Bachani, Abdulgafoor M; Rattani, Abbas; Hyder, Adnan A

    2016-12-01

    Currently, health systems research (HSR) is reviewed by the same ethical standards as clinical research, which has recently been argued in the literature to be an inappropriate standard of evaluation. The issues unique to HSR warrant a different review by research ethics committees (RECs), as it does not impose the same risks to study participants as other types of clinical or public health research. However, there are limited tools and supporting documents that clarify the ethical considerations. Therefore, there is a need for additional reflection around ethical review of HSR and their consideration by RECs. The purpose of this paper is to review, understand, and synthesize the current state of literature and practice to inform these deliberations and the larger discourse on ethics review guidelines for HSR. This paper presents a review of the literature on ethics of HSR in the biomedical, public health, and implementation research to identify ethical considerations specific to HSR; and to identify examples of commonly available guidance and/or tools for the ethical review of HSR studies. Fifteen articles were identified on HSR ethics issues, and forty-two international academic institutions were contacted (of the responses (n=29), no institution had special ethical guidelines for reviewing HSR) about their HSR ethics review guidelines. There appears to be a clear gap in the current health research ethics discourse around health systems research ethics. This review serves as a first step (to better understand the current status) towards a larger dialogue on the topic. © 2016 John Wiley & Sons Ltd.

  17. Ethics and regulation in organ procurement research.

    Science.gov (United States)

    Ackerman, Terrence F; Winsett, Rebecca P

    2002-12-01

    This article explores the role of ethics and regulation in human research conducted by organ procurement agencies; basic ethical principles for human research are outlined. Organ procurement agencies are not required to observe federal regulations; however, voluntary adherence will ensure that procurement research is conducted according to current standards of ethical practice. Although most organ procurement research will qualify for exempt status, this determination should be made by an institutional review board. Even if studies qualify for exempt status, there is a moral presumption that informed consent should be sought, unless certain narrow conditions for waiver of consent are satisfied. Finally, when future research utilizing organ procurement records is anticipated, procurement coordinators should provide sufficiently detailed information to families about such plans to permit their advance informed consent to research activities.

  18. Do we need a special ethics for research?

    Science.gov (United States)

    Hansson, Sven Ove

    2011-03-01

    Research is subject to more stringent ethical requirements than most other human activities, and a procedure that is otherwise allowed may be forbidden in research. Hence, risk-taking is more restricted in scientific research than in most non-research contexts, and privacy is better protected in scientific questionnaires than in marketing surveys. Potential arguments for this difference are scrutinized. The case in its favour appears to be weak. A stronger case can be made in favour of a difference in the opposite direction: If perilous or otherwise problematic activities have to be performed it is usually better to perform them in a research context where they are properly evaluated so that guidance is obtained for the future. However, retreating from current ethical demands on research is not a desirable direction to go. Instead, research ethics can serve to inspire the introduction of more stringent ethical principles in other social sectors.

  19. Towards improving the ethics of ecological research.

    Science.gov (United States)

    Crozier, G K D; Schulte-Hostedde, Albrecht I

    2015-06-01

    We argue that the ecological research community should develop a plan for improving the ethical consistency and moral robustness of the field. We propose a particular ethics strategy--specifically, an ongoing process of collective ethical reflection that the community of ecological researchers, with the cooperation of applied ethicists and philosophers of biology, can use to address the needs we identify. We suggest a particular set of conceptual (in the form of six core values--freedom, fairness, well being, replacement, reduction, and refinement) and analytic (in the forms of decision theoretic software, 1000Minds) tools that, we argue, collectively have the resources to provide an empirically grounded and conceptually complete foundation for an ethics strategy for ecological research. We illustrate our argument with information gathered from a survey of ecologists conducted at the 2013 meeting of the Canadian Society of Ecology and Evolution.

  20. Human rights, politics, and reviews of research ethics.

    Science.gov (United States)

    Beyrer, Chris; Kass, Nancy E

    2002-07-20

    Although the human rights movement and the sphere of research ethics have overlapping principles and goals, there has been little attempt to incorporate external political and human rights contexts into research ethics codes or ethics reviews. Every element of a research ethics review--the balance of risks and benefits, the assurance of rights for individual participants, and the fair selection of research populations--can be affected by the political and human rights background in which a study is done. Research that at first seems to be low in risk may become high in risk if implemented in a country where the government might breach the confidentiality of study results or where results might be used to deport a refugee group. Researchers should determine whether research could or should be done by consulting human rights organisations and, when possible, a trusted colleague, to learn the background political context and human rights conditions of the settings in which they propose to do research.

  1. An Evaluation of Research Ethics in Undergraduate Health Science Research Methodology Programs at a South African University.

    Science.gov (United States)

    Coetzee, Tanya; Hoffmann, Willem A; de Roubaix, Malcolm

    2015-10-01

    The amended research ethics policy at a South African University required the ethics review of undergraduate research projects, prompting the need to explore the content and teaching approach of research ethics education in health science undergraduate programs. Two qualitative data collection strategies were used: document analysis (syllabi and study guides) and semi-structured interviews with research methodology coordinators. Five main themes emerged: (a) timing of research ethics courses, (b) research ethics course content, (c) sub-optimal use of creative classroom activities to facilitate research ethics lectures, (d) understanding the need for undergraduate project research ethics review, and (e) research ethics capacity training for research methodology lecturers and undergraduate project supervisors. © The Author(s) 2015.

  2. Individual Scholar Productivity Rankings in Business Ethics Research

    Directory of Open Access Journals (Sweden)

    Benjamin J. Warnick

    2014-09-01

    Full Text Available The last two decades have been a time of significant development for the academic business ethics community. While a number of scholars have contributed to advances in the field, the work of the individuals who have contributed to its progress and growth through their business ethics research is still not comprehensively understood within the academic business ethics community. This study identifies those individuals who have made major contributions to the business ethics field by ranking authors who have published business ethics-related research in the following six journals over the past 20 years: the Journal of Business Ethics, the Academy of Management Review, the Academy of Management Journal, the Business Ethics Quarterly, the Administrative Science Quarterly; and Business & Society. The results of the study should be of interest to a number of constituencies as they provide the academic business ethics community with a better understanding of the history and evolution of the field and its development towards academic maturity.

  3. Herbal medicine research and global health: an ethical analysis.

    Science.gov (United States)

    Tilburt, Jon C; Kaptchuk, Ted J

    2008-08-01

    Governments, international agencies and corporations are increasingly investing in traditional herbal medicine research. Yet little literature addresses ethical challenges in this research. In this paper, we apply concepts in a comprehensive ethical framework for clinical research to international traditional herbal medicine research. We examine in detail three key, underappreciated dimensions of the ethical framework in which particularly difficult questions arise for international herbal medicine research: social value, scientific validity and favourable risk-benefit ratio. Significant challenges exist in determining shared concepts of social value, scientific validity and favourable risk-benefit ratio across international research collaborations. However, we argue that collaborative partnership, including democratic deliberation, offers the context and process by which many of the ethical challenges in international herbal medicine research can, and should be, resolved. By "cross-training" investigators, and investing in safety-monitoring infrastructure, the issues identified by this comprehensive framework can promote ethically sound international herbal medicine research that contributes to global health.

  4. Ethical issues in using Twitter for public health surveillance and research: developing a taxonomy of ethical concepts from the research literature.

    Science.gov (United States)

    Conway, Mike

    2014-12-22

    The rise of social media and microblogging platforms in recent years, in conjunction with the development of techniques for the processing and analysis of "big data", has provided significant opportunities for public health surveillance using user-generated content. However, relatively little attention has been focused on developing ethically appropriate approaches to working with these new data sources. Based on a review of the literature, this study seeks to develop a taxonomy of public health surveillance-related ethical concepts that emerge when using Twitter data, with a view to: (1) explicitly identifying a set of potential ethical issues and concerns that may arise when researchers work with Twitter data, and (2) providing a starting point for the formation of a set of best practices for public health surveillance through the development of an empirically derived taxonomy of ethical concepts. We searched Medline, Compendex, PsycINFO, and the Philosopher's Index using a set of keywords selected to identify Twitter-related research papers that reference ethical concepts. Our initial set of queries identified 342 references across the four bibliographic databases. We screened titles and abstracts of these references using our inclusion/exclusion criteria, eliminating duplicates and unavailable papers, until 49 references remained. We then read the full text of these 49 articles and discarded 36, resulting in a final inclusion set of 13 articles. Ethical concepts were then identified in each of these 13 articles. Finally, based on a close reading of the text, a taxonomy of ethical concepts was constructed based on ethical concepts discovered in the papers. From these 13 articles, we iteratively generated a taxonomy of ethical concepts consisting of 10 top level categories: privacy, informed consent, ethical theory, institutional review board (IRB)/regulation, traditional research vs Twitter research, geographical information, researcher lurking, economic value

  5. 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.

  6. The "Subject of Ethics" and Educational Research OR Ethics or Politics? Yes Please!

    Science.gov (United States)

    Bazzul, Jesse

    2017-01-01

    This paper outlines a theoretical context for research into "the subject of ethics" in terms of how students come to see themselves as self-reflective actors. I maintain that the "subject of ethics," or ethical subjectivity, has been overlooked as a necessary aspect of creating politically transformative spaces in education. At…

  7. An Overview of Research on Marketing Ethics Education

    Directory of Open Access Journals (Sweden)

    Daniela Hrehová

    2016-12-01

    Full Text Available Purpose – Last two decades have seen a marked increase in the interest given to the field of business ethics, particularly, marketing ethics. Marketing ethics provides an innumerable amount of materials and topics for open discussion, as well as for application in practice. Our intention is to open up a space within which to promote timely debate on contemporary marketing education. Design/Methodology/Approach – Monitoring of academic journals in the area of marketing ethics tuition accessible in electronic databases (EBSCO, ProQuest, Web of Science, Google Scholar by means of the Centre for scientific-technical information SR portal. The work is based on the analysis of thematic categories, and the number of publications and citations. Results are presented in a comprehensive and illustrative manner. Findings and implications – Discussions about marketing ethics and ethical issues are useful. Students need preparation, mentoring and counselling while solving ethical problems, which occur during marketing ethics tuition in the academic field, but also in practice. Academic and scientific sources in the area of marketing ethics education are an excellent “instruction”. Limitations – The limitation of this research can be seen in the fact that we focused especially on the marketing aspect of the ethics education. In further research, other fields of interest should be addressed, for example management or practices in commerce, etc. Originality – The aim of the article is to map current trends in research in the field of marketing ethics education, as presented in scientific journals.

  8. Herbal medicine research and global health: an ethical analysis

    OpenAIRE

    Tilburt, Jon C; Kaptchuk, Ted J

    2008-01-01

    Governments, international agencies and corporations are increasingly investing in traditional herbal medicine research. Yet little literature addresses ethical challenges in this research. In this paper, we apply concepts in a comprehensive ethical framework for clinical research to international traditional herbal medicine research. We examine in detail three key, underappreciated dimensions of the ethical framework in which particularly difficult questions arise for international herbal me...

  9. Ethical Issues in the Research of Group Work

    Science.gov (United States)

    Goodrich, Kristopher M.; Luke, Melissa

    2017-01-01

    This article provides a primer for researchers exploring ethical issues in the research of group work. The article begins with an exploration of relevant ethical issues through the research process and current standards guiding its practice. Next, the authors identify resources that group work researchers can consult prior to constructing their…

  10. The Ethical Behavior of Counselors: New Directions in Ethical Behavior Research.

    Science.gov (United States)

    Paradise, Louis V.

    The ethical behavior of counselors is an issue of current importance to those in the profession. This paper briefly examines the literature in this area. While considerable descriptive research on ethical behavior exists, the conspicuous absence of any experimental methodologies and theoretically-based investigations were noted. The need for new…

  11. Ethics in research; Ethik in der Forschung

    Energy Technology Data Exchange (ETDEWEB)

    Grass, Guido [Koeln Univ. (Germany). Ethik-Kommission der Medizinischen Fakultaet

    2014-07-01

    Taking into account the state of the science, the ethics committee has to decide in research projects with study-related radiation exposure, whether a compelling need for the research project exists. During the critical appraisal, further ethical and legal aspects have to be considered. Even without an application according to X-ray Ordinance (RoeV) or Radiation Protection Ordinance (StrlSchV), the Ethics Committee should advise the applicant whether from their perspective the project requires an approval according to RoeV and StrlSchV. This requires the regular involvement of expert members.

  12. Research governance: new hope for ethics committees?

    Science.gov (United States)

    Frew, Deborah; Martlew, Ainsley

    2007-01-01

    For many years there has been discussion regarding the problems confronting our current ethics review system. Commentators have identified numerous issues that threaten the sustainability of Australia's voluntary HREC system. Various ad hoc solutions to these problems have been posed, but have not resulted in any significant advances. However, in recent years, discourse regarding research governance has become prominent in the Australian research environment. The application of research governance principles is gaining momentum amongst the regulators of research, including research institutions and their governing bureaucracies. We argue that this is potentially the most significant development in several years towards creating a sustainable HREC system in Australia. The recognition by research institutions and their governing bureaucracies that the responsibility for overall research governance lies with them, rather than solely with their HRECs, is leading to a range of initiatives which should significantly lessen the burden on Australian ethics committees, and improve their ability to undertake their core task of reviewing the ethical aspects of research proposals.

  13. Solving Ethical Dilemmas with Children: Empowering Classroom Research

    Science.gov (United States)

    Parr, Michelann

    2010-01-01

    This article identifies and discusses ethical dilemmas inherent when undertaking research with children or other vulnerable populations: power relations, risks and benefits, and informed consent and confidentiality (Maguire, 2005). Ethical dilemmas often arise when researchers attempt to merge the interests of their research and the interests of…

  14. Resilience research in schizophrenia: a review of recent developments.

    Science.gov (United States)

    Mizuno, Yuya; Wartelsteiner, Fabienne; Frajo-Apor, Beatrice

    2016-05-01

    The concept of resilience is expected to be relevant in understanding the heterogeneous outcomes associated with schizophrenia. We reviewed recent developments in clinical studies focusing on the biological and psychological aspects of resilience in this population. We aimed to clarify current concepts of resilience in the field, elucidate gaps in the literature, and provide recommendations for future research. A total of 20 articles published between 2014 and 2015 were included. Six studies were neuroimaging studies, while the remaining studies used various psychological assessments. Most studies were cross-sectional except for three studies with naturalistic follow-up, one single-blind randomized controlled trial, and two published protocols of prospective studies. The following patterns of research were evident among the highly heterogeneous literature: studies focusing on protective factors and others emphasizing dynamic processes, studies investigating 'at-risk but resilient' groups (e.g. nonpsychotic siblings of patients with schizophrenia), and studies using psychological scales to measure resilience. The heterogeneity in how reports conceptualize, assess, and interpret resilience likely reflects the multidimensional nature of the concept itself and the lack of a 'gold standard' in assessing resilience in schizophrenia. Further research is needed to make recommendations on how to facilitate resilience in clinical care.

  15. Factors influencing the effectiveness of research ethics committees.

    Science.gov (United States)

    Schuppli, C A; Fraser, D

    2007-05-01

    Research ethics committees - animal ethics committees (AECs) for animal-based research and institutional research boards (IRBs) for human subjects - have a key role in research governance, but there has been little study of the factors influencing their effectiveness. The objectives of this study were to examine how the effectiveness of a research ethics committee is influenced by committee composition and dynamics, recruitment of members, workload, participation level and member turnover. As a model, 28 members of AECs at four universities in western Canada were interviewed. Committees were selected to represent variation in the number and type of protocols reviewed, and participants were selected to include different types of committee members. We found that a bias towards institutional or scientific interests may result from (1) a preponderance of institutional and scientist members, (2) an intimidating atmosphere for community members and other minority members, (3) recruitment of community members who are affiliated with the institution and (4) members joining for reasons other than to fulfil the committee mandate. Thoroughness of protocol review may be influenced by heavy workloads, type of review process and lack of full committee participation. These results, together with results from the literature on research ethics committees, suggested potential ways to improve the effectiveness of research ethics committees.

  16. The status of research ethics in social work.

    Science.gov (United States)

    Ferguson, Aidan; Clark, James J

    2018-01-01

    Research ethics provide important and necessary standards related to the conduct and dissemination of research. To better understand the current state of research ethics discourse in social work, a systematic literature search was undertaken and numbers of publications per year were compared between STEM, social science, and social work disciplines. While many professions have embraced the need for discipline-specific research ethics subfield development, social work has remained absent. Low publication numbers, compared to other disciplines, were noted for the years (2006-2016) included in the study. Social work published 16 (1%) of the 1409 articles included in the study, contributing 3 (>1%) for each of the disciplines highest producing years (2011 and 2013). Comparatively, psychology produced 75 (5%) articles, psychiatry produced 64 (5%) articles, and nursing added 50 (4%) articles. The STEM disciplines contributed 956 (68%) articles between 2006 and 2016, while social science produced 453 (32%) articles. Examination of the results is provided in an extended discussion of several misconceptions about research ethics that may be found in the social work profession. Implications and future directions are provided, focusing on the need for increased engagement, education, research, and support for a new subfield of social work research ethics.

  17. Rattling the Cage: Moving beyond Ethical Standards to Ethical Praxis in Self-Study Research

    Science.gov (United States)

    Brandenburg, Robyn; Gervasoni, Ann

    2012-01-01

    The ethical practice underpinning self-study research has been addressed extensively in the literature of self-study of teacher education practices. Less attention has been paid to how researchers deal with ethical tensions and dilemmas when they arise unexpectedly during self-study research. In this article, we examine how the extrapolation and…

  18. Biomedical scientists' perceptions of ethical and social implications: is there a role for research ethics consultation?

    Directory of Open Access Journals (Sweden)

    Jennifer B McCormick

    Full Text Available Research ethics consultation programs are being established with a goal of addressing the ethical, societal, and policy considerations associated with biomedical research. A number of these programs are modelled after clinical ethics consultation services that began to be institutionalized in the 1980s. Our objective was to determine biomedical science researchers' perceived need for and utility of research ethics consultation, through examination of their perceptions of whether they and their institutions faced ethical, social or policy issues (outside those mandated by regulation and examination of willingness to seek advice in addressing these issues. We conducted telephone interviews and focus groups in 2006 with researchers from Stanford University and a mailed survey in December 2006 to 7 research universities in the U.S.A total of 16 researchers were interviewed (75% response rate, 29 participated in focus groups, and 856 responded to the survey (50% response rate. Approximately half of researchers surveyed (51% reported that they would find a research ethics consultation service at their institution moderately, very or extremely useful, while over a third (36% reported that such a service would be useful to them personally. Respondents conducting human subjects research were more likely to find such a service very to extremely useful to them personally than respondents not conducting human subjects research (20% vs 10%; chi(2 p<0.001.Our findings indicate that biomedical researchers do encounter and anticipate encountering ethical and societal questions and concerns and a substantial proportion, especially clinical researchers, would likely use a consultation service if they were aware of it. These findings provide data to inform the development of such consultation programs in general.

  19. A Swedish perspective on research ethics review

    Directory of Open Access Journals (Sweden)

    Hans Thulesius, M.D., G.P., Ph.D.

    2010-12-01

    Full Text Available I have participated in writing ethical approval applications for research projects in Sweden a dozen times. I am also since some years a member of the local ethics advisory board in a mostly rural area serving 180.000 people. From that position I advise on what types of local project applications will have to be sent further to the regional ethics committee, REPN in Sweden. With that background I will try to give a brief Swedish perspective on research ethics reviews in general and regarding CGT (classic grounded theory studies using qualitative data in particular.The most famous Swedish example of unethical research is the 1947-1951 Vipeholm sugar trial (Krasse, 2001. Several hundred intellectually and mentally challenged persons at the Vipeholm institution were for years given an excess amount of sugar, mostly in the shape of candy. This resulted in caries that totally ruined the teeth of 50 persons. Of course participants did not give informed consent. Yet, at the time the research was not considered unethical. At least there was no debate about it.

  20. Qualitative research ethics on the spot: Not only on the desktop.

    Science.gov (United States)

    Øye, Christine; Sørensen, Nelli Øvre; Glasdam, Stinne

    2016-06-01

    The increase in medical ethical regulations and bureaucracy handled by institutional review boards and healthcare institutions puts the researchers using qualitative methods in a challenging position. Based on three different cases from three different research studies, the article explores and discusses research ethical dilemmas. First, and especially, the article addresses the challenges for gatekeepers who influence the informant's decisions to participate in research. Second, the article addresses the challenges in following research ethical guidelines related to informed consent and doing no harm. Third, the article argues for the importance of having research ethical guidelines and review boards to question and discuss the possible ethical dilemmas that occur in qualitative research. Research ethics must be understood in qualitative research as relational, situational, and emerging. That is, that focus on ethical issues and dilemmas has to be paid attention on the spot and not only at the desktop. © The Author(s) 2015.

  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. Enhancing Research Ethics Review Systems in Egypt: The Focus of an International Training Program Informed by an Ecological Developmental Approach to Enhancing Research Ethics Capacity.

    Science.gov (United States)

    Edwards, Hillary Anne; Hifnawy, Tamer; Silverman, Henry

    2015-12-01

    Recently, training programs in research ethics have been established to enhance individual and institutional capacity in research ethics in the developing world. However, commentators have expressed concern that the efforts of these training programs have placed 'too great an emphasis on guidelines and research ethics review', which will have limited effect on ensuring ethical conduct in research. What is needed instead is a culture of ethical conduct supported by national and institutional commitment to ethical practices that are reinforced by upstream enabling conditions (strong civil society, public accountability, and trust in basic transactional processes), which are in turn influenced by developmental conditions (basic freedoms of political freedoms, economic facilities, social opportunities, transparency guarantees, and protective security). Examining this more inclusive understanding of the determinants of ethical conduct enhances at once both an appreciation of the limitations of current efforts of training programs in research ethics and an understanding of what additional training elements are needed to enable trainees to facilitate national and institutional policy changes that enhance research practices. We apply this developmental model to a training program focused in Egypt to describe examples of such additional training activities. © 2014 John Wiley & Sons Ltd.

  3. Use of narratives to enhance learning of research ethics in residents and researchers.

    Science.gov (United States)

    Sim, Kang; Sum, Min Yi; Navedo, Deborah

    2015-03-10

    Past didactic pedagogy on biomedical research ethics and informed consent in our program had resulted in passive memorization of information and disengaged learning within psychiatry residents and clinical researchers. The question is how do we better motivate and engage learners within the session. Thus, we incorporated narratives into the learning environment and hypothesised that the use of narratives in the teaching of biomedical research ethics and informed consent would be associated with greater engagement, motivation, understanding, reflective learning and effectiveness of the teaching session. The narratives were chosen from the history of research ethics and the humanities literature related to human subject research. Learners were asked to provide post-session feedback through an anonymised questionnaire on their learning session. An outcomes logic model was used for assessment with focus on immediate outcomes such as engagement, motivation, understanding and reflective learning. Overall, 70.5% (N = 273) of the learners responded to the questionnaire. Amongst the respondents, 92.6% (N = 253) of the participants ranked use of narratives as most helpful in appreciating the historical context of research ethics and informed consent in research. The majority felt engaged (89.8%, N = 245), more motivated to learn (77.5%, N = 212) and better equipped (86.4%, N = 236) about the subject matter. Better appreciation of the learning topic, engagement, motivation to learn, equipping were strongly correlated with the promotion of reflective learning, effectiveness of teaching, promotion of critical thinking and overall positive rating of the teaching session on research ethics (all p ethics and informed consent, and address underlying motivational factors behind learning and understanding of research ethics.

  4. 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.

  5. Multinational comparative cross-sectional survey of views of medical students about acceptable terminology and subgroups in schizophrenia.

    Science.gov (United States)

    Rathod, Shanaya; Irfan, Muhammad; Bhargava, Rachna; Pinninti, Narsimha; Scott, Joseph; Mohammad Algahtani, Haifa; Guo, Zhihua; Gupta, Rishab; Nadkarni, Pallavi; Naeem, Farooq; Howells, Fleur; Sorsdahi, Katherine; Thorne, Kerensa; Osman-Hicks, Victoria; Pallikadavath, Sasee; Phiri, Peter; Carr, Hannah; Graves, Lizi; Kingdon, David

    2018-06-07

    research is warranted to investigate acceptability of terminology. Methods of reducing stigma are discussed in line with the findings. The study received ethical approval from ERGO (Ethics and Research Governance Online; ID: 15972) and subsequently from the ethics committee at each site. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

  6. Research Ethics Education in Post-Graduate Medical Curricula in I.R. Iran.

    Science.gov (United States)

    Nikravanfard, Nazila; Khorasanizadeh, Faezeh; Zendehdel, Kazem

    2017-08-01

    Research ethics training during post-graduate education is necessary to improve ethical standards in the design and conduct of biomedical research. We studied quality and quantity of research ethics training in the curricula of post-graduate programs in the medical science in I.R. Iran. We evaluated curricula of 125 post-graduate programs in medical sciences in I.R. Iran. We qualitatively studied the curricula by education level, including the Master and PhD degrees and analyzed the contents and the amount of teaching allocated for ethics training in each curriculum. We found no research ethics training in 72 (58%) of the programs. Among the 53 (42%) programs that considered research ethics training, only 17 programs had specific courses for research ethics and eight of them had detailed topics on their courses. The research ethics training was optional in 25% and mandatory in 76% of the programs. Post-graduate studies that were approved in the more recent years had more attention to the research ethics training. Research ethics training was neglected in most of the medical post-graduate programs. We suggest including sufficient amount of mandatory research ethics training in Master and PhD programs in I.R. Iran. Further research about quality of research ethics training and implementation of curricula in the biomedical institutions is warranted. © 2016 John Wiley & Sons Ltd.

  7. Ethnocentric ethics in anthropological research

    NARCIS (Netherlands)

    van der Geest, S.

    2011-01-01

    The paper discusses the application of ethnocentric ethical rules in anthropological research. The ethnocentrism lies in the fact that North American and European definitions of right and wrong are imposed on anthropological research everywhere in the world. Apparently - and ironically - some

  8. Research across the disciplines: a road map for quality criteria in empirical ethics research.

    Science.gov (United States)

    Mertz, Marcel; Inthorn, Julia; Renz, Günter; Rothenberger, Lillian Geza; Salloch, Sabine; Schildmann, Jan; Wöhlke, Sabine; Schicktanz, Silke

    2014-03-01

    Research in the field of Empirical Ethics (EE) uses a broad variety of empirical methodologies, such as surveys, interviews and observation, developed in disciplines such as sociology, anthropology, and psychology. Whereas these empirical disciplines see themselves as purely descriptive, EE also aims at normative reflection. Currently there is literature about the quality of empirical research in ethics, but little or no reflection on specific methodological aspects that must be considered when conducting interdisciplinary empirical ethics. Furthermore, poor methodology in an EE study results in misleading ethical analyses, evaluations or recommendations. This not only deprives the study of scientific and social value, but also risks ethical misjudgement. While empirical and normative-ethical research projects have quality criteria in their own right, we focus on the specific quality criteria for EE research. We develop a tentative list of quality criteria--a "road map"--tailored to interdisciplinary research in EE, to guide assessments of research quality. These quality criteria fall into the categories of primary research question, theoretical framework and methods, relevance, interdisciplinary research practice and research ethics and scientific ethos. EE research is an important and innovative development in bioethics. However, a lack of standards has led to concerns about and even rejection of EE by various scholars. Our suggested orientation list of criteria, presented in the form of reflective questions, cannot be considered definitive, but serves as a tool to provoke systematic reflection during the planning and composition of an EE research study. These criteria need to be tested in different EE research settings and further refined.

  9. Ethics in Research on Learning: Dialectics of Praxis and Praxeology

    Directory of Open Access Journals (Sweden)

    SungWon Hwang

    2005-01-01

    Full Text Available Qualitative social research designed to develop ways of understanding and explaining lived experience of human beings is a reflexive human endeavor. It is reflexive in that as researchers attempt to better understand their participants, they also come to better understand themselves. Consequently, research ethics itself becomes an ethical project, for it pertains to participant and researcher at the same time: Both are subjects, knower and known. Particularly in case of research on learning, reflexivity arises from the fact that the research itself constitutes learning about learning. How is ethics in research on learning reflexive of, in its praxis and praxeology, ongoing events and changes of the human learning? In this study, from our experience of conducting a project designed to inquire into "learning in unfamiliar environments," we develop pertinent ethical issues through a dialectical process—not unlike that used by G.W.F. HEGEL in Phenomenology of Spirit—grounded in our lived experience and developed in three theoretical claims concerning a praxeology of ethics. First, ethics is an ongoing historical event; second, ethics is based on the communicative praxis of material bodies; and third, ethics involves the creation of new communicative configurations. We conclude that ethics is grounded in a fundamental answerability of human beings for their actions, which requires communicative action that itself is a dialectical process in opening up possibilities for acting in an answerable manner. URN: urn:nbn:de:0114-fqs0501198

  10. Clinical research ethics review process in Lebanon: efficiency and functions of research ethics committees – results from a descriptive questionnaire-based study

    OpenAIRE

    Atallah, David; Moubarak, Malak; El Kassis, Nadine; Abboud, Sara

    2018-01-01

    Background Clinical trials conducted in Lebanon are increasing. However, little is known about the performance of research ethics committees (RECs) in charge of reviewing the research protocols. This study aimed to assess the level of adherence to the ethics surrounding the conduct of clinical trials and perceptions of team members regarding roles of the RECs during the conduct of clinical trials in Lebanon. The research question was: Are RECs adherent to the ethics surrounding the conduct of...

  11. Scientists' perspectives on the ethical issues of stem cell research.

    Science.gov (United States)

    Longstaff, Holly; Schuppli, Catherine A; Preto, Nina; Lafrenière, Darquise; McDonald, Michael

    2009-06-01

    This paper describes findings from an ethics education project funded by the Canadian Stem Cell Network (SCN). The project is part of a larger research initiative entitled "The Stem Cell Research Environment: Drawing the Evidence and Experience Together". The ethics education study began with a series of focus groups with SCN researchers and trainees as part of a "needs assessment" effort. The purpose of these discussions was to identify the main ethical issues associated with stem cell (SC) research from the perspective of the stem cell community. This paper will focus on five prominent themes that emerged from the focus group data including: (1) the source of stem cells; (2) the power of stem cells; (3) working within a charged research environment; (4) the regulatory context; and (5) ethics training for scientists. Additional discussions are planned with others involved in Canadian stem cell research (e.g., research ethics board members, policy makers) to supplement initial findings. These assessment results combined with existing bioethics literature will ultimately inform a web-based ethics education module for the SCN. We believe that our efforts are important for those analyzing the ethical, legal, and social issues (ELSI) in this area because our in depth understanding of stem cell researcher perspectives will enable us to develop more relevant and effective education material, which in turn should help SC researchers address the important ethical challenges in their area.

  12. Medical ethics, bioethics and research ethics education perspectives in South East Europe in graduate medical education.

    Science.gov (United States)

    Mijaljica, Goran

    2014-03-01

    Ethics has an established place within the medical curriculum. However notable differences exist in the programme characteristics of different schools of medicine. This paper addresses the main differences in the curricula of medical schools in South East Europe regarding education in medical ethics and bioethics, with a special emphasis on research ethics, and proposes a model curriculum which incorporates significant topics in all three fields. Teaching curricula of Medical Schools in Bulgaria, Bosnia and Herzegovina, Croatia, Serbia, Macedonia and Montenegro were acquired and a total of 14 were analyzed. Teaching hours for medical ethics and/or bioethics and year of study in which the course is taught were also analyzed. The average number of teaching hours in medical ethics and bioethics is 27.1 h per year. The highest national average number of teaching hours was in Croatia (47.5 h per year), and the lowest was in Serbia (14.8). In the countries of the European Union the mean number of hours given to ethics teaching throughout the complete curriculum was 44. In South East Europe, the maximum number of teaching hours is 60, while the minimum number is 10 teaching hours. Research ethics topics also show a considerable variance within the regional medical schools. Approaches to teaching research ethics vary, even within the same country. The proposed model for education in this area is based on the United Nations Educational, Scientific and Cultural Organization Bioethics Core Curriculum. The model curriculum consists of topics in medical ethics, bioethics and research ethics, as a single course, over 30 teaching hours.

  13. Situated ethics in collaborative research with children

    DEFF Research Database (Denmark)

    Chimirri, Niklas Alexander

    an epistemological as well as an ontological necessity. The paper discusses how a renegotiation of ethics is particularly difficult whilst engaging in a project investigating everyday media experiences of young children (aged 3-6) at a German day care centre. Albeit the children were explicitly considered co......-researchers to the research questions, the most visible negotiations of enacted ethics took place among the participating adults: researcher, parents, and pedagogues – thereby potentially shunning the children’s perspectives on the research process. Nevertheless does the paper argue that an iterative renegotiation of ethics...... took place also with the children, and that the principle challenge lies in rendering these renegotiations visible in academic publications. It proposes conceptual developments that draw on both New Materialism and the Psychology from the Standpoint of the Subject in order to tackle this challenge....

  14. [Ethics and laws related to human subject research].

    Science.gov (United States)

    Chiu, Hui-Ju; Lee, Ya-Ling; Chang, Su-Fen

    2011-10-01

    Advances in medical technology rely on human subject research to test the effects on real patients of unproven new drugs, equipment and techniques. Illegal human subject research happens occasionally and has led to subject injury and medical disputes. Familiarity with the laws and established ethics related to human subject research can minimize both injury and disputes. History is a mirror that permits reflection today on past experience. Discussing the Nuremberg Code, the Declaration of Helsinki and Belmont Report, this article describes the laws, ethics, history and news related to human subject research as well as the current definition and characteristics of human subject research. Increasing numbers of nurses serve as research nurses and participate in human subject research. The authors hope this article can increase research nurse knowledge regarding laws and ethics in order to protect human research subjects adequately.

  15. Ethics and epistemology of accurate prediction in clinical research.

    Science.gov (United States)

    Hey, Spencer Phillips

    2015-07-01

    All major research ethics policies assert that the ethical review of clinical trial protocols should include a systematic assessment of risks and benefits. But despite this policy, protocols do not typically contain explicit probability statements about the likely risks or benefits involved in the proposed research. In this essay, I articulate a range of ethical and epistemic advantages that explicit forecasting would offer to the health research enterprise. I then consider how some particular confidence levels may come into conflict with the principles of ethical research. 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.

  16. Will the new code help researchers to be more ethical?

    Science.gov (United States)

    Sieber, J E

    1994-11-01

    A code of ethics has 2 largely incompatible objectives: to set forth enforceable minimal standards of conduct and to teach about or invoke ethical conduct. The section of the new American Psychological Association code dealing with research ethics achieves the former to some degree. However, it neither provides needed education in the ethics of research nor states where the reader might turn for such information. The code is particularly deficient in the following areas: privacy and confidentiality; institutional review boards; deception; debriefing; data sharing; and research on marginal populations, on children and adolescents, and in organizational contexts. Suggestions are offered for providing a bibliographic resource, in hard copy and on-line, that would stimulate independent interest, scholarship, education, and research on research ethics.

  17. The Challenge of Timely, Responsive and Rigorous Ethics Review of Disaster Research: Views of Research Ethics Committee Members.

    Directory of Open Access Journals (Sweden)

    Matthew Hunt

    Full Text Available Research conducted following natural disasters such as earthquakes, floods or hurricanes is crucial for improving relief interventions. Such research, however, poses ethical, methodological and logistical challenges for researchers. Oversight of disaster research also poses challenges for research ethics committees (RECs, in part due to the rapid turnaround needed to initiate research after a disaster. Currently, there is limited knowledge available about how RECs respond to and appraise disaster research. To address this knowledge gap, we investigated the experiences of REC members who had reviewed disaster research conducted in low- or middle-income countries.We used interpretive description methodology and conducted in-depth interviews with 15 respondents. Respondents were chairs, members, advisors, or coordinators from 13 RECs, including RECs affiliated with universities, governments, international organizations, a for-profit REC, and an ad hoc committee established during a disaster. Interviews were analyzed inductively using constant comparative techniques.Through this process, three elements were identified as characterizing effective and high-quality review: timeliness, responsiveness and rigorousness. To ensure timeliness, many RECs rely on adaptations of review procedures for urgent protocols. Respondents emphasized that responsive review requires awareness of and sensitivity to the particularities of disaster settings and disaster research. Rigorous review was linked with providing careful assessment of ethical considerations related to the research, as well as ensuring independence of the review process.Both the frequency of disasters and the conduct of disaster research are on the rise. Ensuring effective and high quality review of disaster research is crucial, yet challenges, including time pressures for urgent protocols, exist for achieving this goal. Adapting standard REC procedures may be necessary. However, steps should be

  18. Ethical Perspectives on Qualitative Research in Applied Psychology

    Science.gov (United States)

    Haverkamp, Beth E.

    2005-01-01

    The present article explores ethical issues that emerge in qualitative research conducted by applied psychologists. The utility and relevance of the Ethical Principles of Psychologists and Code of Conduct (American Psychological Association, 2002) for qualitative research are examined. The importance of psychology's fiduciary relationship with…

  19. Professional ethics in biomedical engineering practice and research.

    Science.gov (United States)

    Monzon, Jorge E; Monzon-Wyngaard, Alvaro

    2008-01-01

    This paper discusses some guidelines for use with the accepted fundamental canons of ethics for engineers. We present some rules of practice and professional obligations emerging from these canons. Basic recommendations for engineers dissenting on ethical grounds are also presented. Ethical issues relating to Biomedical Engineering research are illustrated. We mention some cases that could be used to further understanding the ethical implications of biomedical engineering practice.

  20. What do international ethics guidelines say in terms of the scope of medical research ethics?

    Science.gov (United States)

    Bernabe, Rosemarie D L C; van Thiel, Ghislaine J M W; van Delden, Johannes J M

    2016-04-26

    In research ethics, the most basic question would always be, "which is an ethical issue, which is not?" Interestingly, depending on which ethics guideline we consult, we may have various answers to this question. Though we already have several international ethics guidelines for biomedical research involving human participants, ironically, we do not have a harmonized document which tells us what these various guidelines say and shows us the areas of consensus (or lack thereof). In this manuscript, we attempted to do just that. We extracted the imperatives from five internationally-known ethics guidelines and took note where the imperatives came from. In doing so, we gathered data on how many guidelines support a specific imperative. We found that there is no consensus on the majority of the imperatives and that in only 8.2% of the imperatives were there at least moderate consensus (i.e., consensus of at least 3 of the 5 ethics guidelines). Of the 12 clusters (Basic Principles; Research Collaboration; Social Value; Scientific Validity; Participant Selection; Favorable Benefit/Risk Ratio; Independent Review; Informed Consent; Respect for Participants; Publication and Registration; Regulatory Sanctions; and Justified Research on the Vulnerable Population), Informed Consent has the highest level of consensus and Research Collaboration and Regulatory Sanctions have the least. There was a lack of consensus in the majority of imperatives from the five internationally-known ethics guidelines. This may be partly explained by the differences among the guidelines in terms of their levels of specification as well as conceptual/ideological differences.

  1. You Must Participate: Violating Research Ethical Principles through Role-Play

    Science.gov (United States)

    Kraus, Rachel

    2008-01-01

    The author discusses the use of role-play to teach research ethics in three semesters of a research methods class. Small groups of students were assigned one of nine ethical norms discussed in the course textbook and the American Sociological Association Code of Ethics. Each group role-played the violation of their assigned ethic to the class. The…

  2. Highlights from the Biennial International Congress on Schizophrenia Research (ICOSR), April 21-25, 2013.

    Science.gov (United States)

    Curley, Allison A; Fisher, Helen L

    2013-01-01

    The 2013 International Congress on Schizophrenia Research, held in Orlando Grande Lakes, Florida, attracted over 1,000 attendees to the JW Marriott Hotel from 21-25 April 2013, not to mention the satellite meetings on cognition and the schizophrenia prodrome. With thanks to the Schizophrenia Research Forum (www.schizophreniaforum.org), a project of the Brain and Behavior Research Foundation, we bring you the following report on the Congress' sessions concerning DSM-5/ICD-11 and the psychosis continuum. We also want to thank Congress directors Carol Tamminga and Chuck Schulz, as well as meeting staff Dorothy Denton and Cristan Tamminga, for their gracious assistance.

  3. The validity of the schizophrenia diagnosis in the Danish Psychiatric Central Research Register is good

    DEFF Research Database (Denmark)

    Uggerby, Peter; Østergaard, Søren Dinesen; Røge, Rasmus

    2013-01-01

    INTRODUCTION: The Danish Psychiatric Central Research Register (DPCRR) has been used extensively for research purposes during the past decades. The aim of this study was to investigate the validity of the International Classification of Diseases (ICD)-10 schizophrenia diagnosis in the DPCRR...... all 300 case records, the validity of the schizophrenia diagnosis was 89.7%. CONCLUSION: According to this assessment of patient case records, the diagnosis of schizophrenia in the DPCRR has a high validity and is well-suited for research. FUNDING: Aalborg Psychiatric Hospital funded the study...

  4. Using Short Videos to Teach Research Ethics

    Science.gov (United States)

    Loui, M. C.

    2014-12-01

    Created with support from the National Science Foundation, EthicsCORE (www.natonalethicscenter.org) is an online resource center for ethics in science and engineering. Among the resources, EthicsCORE hosts short video vignettes produced at the University of Nebraska - Lincoln that dramatize problems in the responsible conduct of research, such as peer review of journal submissions, and mentoring relationships between faculty and graduate students. I will use one of the video vignettes in an interactive pedagogical demonstration. After showing the video, I will ask participants to engage in a think-pair-share activity on the professional obligations of researchers. During the sharing phase, participants will supply the reasons for these obligations.

  5. Research across the disciplines: a road map for quality criteria in empirical ethics research

    Science.gov (United States)

    2014-01-01

    Background Research in the field of Empirical Ethics (EE) uses a broad variety of empirical methodologies, such as surveys, interviews and observation, developed in disciplines such as sociology, anthropology, and psychology. Whereas these empirical disciplines see themselves as purely descriptive, EE also aims at normative reflection. Currently there is literature about the quality of empirical research in ethics, but little or no reflection on specific methodological aspects that must be considered when conducting interdisciplinary empirical ethics. Furthermore, poor methodology in an EE study results in misleading ethical analyses, evaluations or recommendations. This not only deprives the study of scientific and social value, but also risks ethical misjudgement. Discussion While empirical and normative-ethical research projects have quality criteria in their own right, we focus on the specific quality criteria for EE research. We develop a tentative list of quality criteria – a “road map” – tailored to interdisciplinary research in EE, to guide assessments of research quality. These quality criteria fall into the categories of primary research question, theoretical framework and methods, relevance, interdisciplinary research practice and research ethics and scientific ethos. Summary EE research is an important and innovative development in bioethics. However, a lack of standards has led to concerns about and even rejection of EE by various scholars. Our suggested orientation list of criteria, presented in the form of reflective questions, cannot be considered definitive, but serves as a tool to provoke systematic reflection during the planning and composition of an EE research study. These criteria need to be tested in different EE research settings and further refined. PMID:24580847

  6. Ethical Considerations for Teacher-Education Researchers of Coteaching

    Directory of Open Access Journals (Sweden)

    Stephen M. Ritchie

    2006-09-01

    Full Text Available In small-scale studies of coteaching, there are few genuine ethical dilemmas for researchers providing participants are engaged in ongoing dialogue about the purposes and emerging results of the research. When studies are up-scaled for teacher education programs, the territory is uncharted. This adds uncertainty about the ethical codes of practice for a teacher education program director who initiates such research. If the research is likely to lead to valued learning experiences for participating interns without harm to other participants, it may be ethical to proceed. In this paper I suggest that even though getting the balance right will continue to challenge researchers, it will be essential to establish and maintain dialogue between all participants. URN: urn:nbn:de:0114-fqs0604218

  7. Continuing Education in Research Ethics for the Clinical Nurse.

    Science.gov (United States)

    Jeffers, Brenda Recchia

    2002-01-01

    Review of professional nursing statements, federal policy, and recommendations for protection of human research subjects resulted in a topic and content outline for research ethics training for nurses. Suggestions for continuing education programs on research ethics were formulated. (SK)

  8. Research ethics and private harms.

    Science.gov (United States)

    Koocher, Gerald P

    2014-12-01

    This commentary addresses the emotionally powerful account of Nicole Taus Kluemper from the perspective of a psychologist familiar with the administrative operation of the American Psychological Association (APA) and the ethics of the profession. The application of the APA's Ethical Principles of Psychologists and Code of Conduct to the case is discussed, and alternative methods of response that researchers who have concerns about case studies might use are offered. The author concludes that existing ethical principles-the aspirational standards in particular-do bear upon the matter in question. However, the enforceable code of conduct is not sufficiently clear about obligations to those whom psychologists publicly discuss when the psychologist does not have a specific duty of care to an individual. © The Author(s) 2014.

  9. Ethical challenges embedded in qualitative research interviews with close relatives.

    Science.gov (United States)

    Haahr, Anita; Norlyk, Annelise; Hall, Elisabeth Oc

    2014-02-01

    Nurse researchers engaged in qualitative interviews with patients and spouses in healthcare may often experience being in unforeseen ethical dilemmas. Researchers are guided by the bioethical principles of justice, beneficence, non-maleficence, respect for human rights and respect for autonomy through the entire research process. However, these principles are not sufficient to prepare researchers for unanticipated ethical dilemmas related to qualitative research interviews. We describe and discuss ethically challenging and difficult moments embedded in two cases from our own phenomenological interview studies. We argue that qualitative interviews involve navigation between being guided by bioethics as a researcher, being a therapist/nurse and being a fellow human being or even a friend. The researchers' premises to react to unexpected situations and act in a sound ethical manner must be enhanced, and there is a need for an increased focus on the researchers' ethical preparation and to continually address and discuss cases from their own interviews.

  10. Research Ethics II: Mentoring, Collaboration, Peer Review, and Data Management and Ownership

    Science.gov (United States)

    Horner, Jennifer; Minifie, Fred D.

    2011-01-01

    Purpose: In this series of articles--"Research Ethics I", "Research Ethics II", and "Research Ethics III"--the authors provide a comprehensive review of the 9 core domains for the responsible conduct of research (RCR) as articulated by the Office of Research Integrity. In "Research Ethics II", the authors review the RCR domains of mentoring,…

  11. Knowledge of the Nigerian Code of Health Research Ethics Among Biomedical Researchers in Southern Nigeria.

    Science.gov (United States)

    Ogunrin, Olubunmi A; Daniel, Folasade; Ansa, Victor

    2016-12-01

    Responsibility for protection of research participants from harm and exploitation rests on Research Ethics Committees and principal investigators. The Nigerian National Code of Health Research Ethics defines responsibilities of stakeholders in research so its knowledge among researchers will likely aid ethical conduct of research. The levels of awareness and knowledge of the Code among biomedical researchers in southern Nigerian research institutions was assessed. Four institutions were selected using a stratified random sampling technique. Research participants were selected by purposive sampling and completed a pre-tested structured questionnaire. A total of 102 biomedical researchers completed the questionnaires. Thirty percent of the participants were aware of the National Code though 64% had attended at least one training seminar in research ethics. Twenty-five percent had a fairly acceptable knowledge (scores 50%-74%) and 10% had excellent knowledge of the code (score ≥75%). Ninety-five percent expressed intentions to learn more about the National Code and agreed that it is highly relevant to the ethical conduct of research. Awareness and knowledge of the Code were found to be very limited among biomedical researchers in southern Nigeria. There is need to improve awareness and knowledge through ethics seminars and training. Use of existing Nigeria-specific online training resources is also encouraged.

  12. ETHICAL REVIEW OF BIOMEDICAL RESEARCH IN BELARUS: CURRENT STATUS, PROBLEMS AND PERSPECTIVES.

    Science.gov (United States)

    Famenka, Andrei

    2011-04-01

    The paper provides description of the system of ethical review for biomedical research in Belarus, with special emphasis on its historical background, legal and regulatory framework, structure and functioning. It concludes that the situation with research ethics in Belarus corresponds to the tendency of bureaucratic approach to establishment of systems of ethical review for biomedical research, observed in a number of countries of Central and Eastern Europe. Different social, economical and political factors of transition have major impact on capacities of the Belarusian RECs to ensure adequate protection of human subjects. Among the main problems identified are non-equivalent stringency of ethical review for different types of biomedical research; lack of independence, multidisciplinarity, pluralism and lay representation experienced by RECs; low level of research ethics education and transparency of RECs activities. Recommendations are made to raise the issue of research ethics on the national agenda in order to develop and maintain the research ethics system capable to effectively protect research participants and promote ethical conduct in research.

  13. Ethical aspects of registry-based research in the Nordic countries.

    Science.gov (United States)

    Ludvigsson, Jonas F; Håberg, Siri E; Knudsen, Gun Peggy; Lafolie, Pierre; Zoega, Helga; Sarkkola, Catharina; von Kraemer, Stephanie; Weiderpass, Elisabete; Nørgaard, Mette

    2015-01-01

    National health care registries in the Nordic countries share many attributes, but different legal and ethical frameworks represent a challenge to promoting effective joint research. Internationally, there is a lack of knowledge about how ethical matters are considered in Nordic registry-based research, and a lack of knowledge about how Nordic ethics committees operate and what is needed to obtain an approval. In this paper, we review ethical aspects of registry-based research, the legal framework, the role of ethics review boards in the Nordic countries, and the structure of the ethics application. We discuss the role of informed consent in registry-based research and how to safeguard the integrity of study participants, including vulnerable subjects and children. Our review also provides information on the different government agencies that contribute registry-based data, and a list of the major health registries in Denmark, Finland, Iceland, Norway, and Sweden. Both ethical values and conditions for registry-based research are similar in the Nordic countries. While Denmark, Finland, Iceland, Norway, and Sweden have chosen different legal frameworks, these differences can be resolved through mutual recognition of ethical applications and by harmonizing the different systems, likely leading to increased collaboration and enlarged studies.

  14. The ethics in qualitative health research: special considerations.

    Science.gov (United States)

    Peter, Elizabeth

    2015-09-01

    A sound knowledge of the nature of qualitative research, along with an appreciation of some special ethical considerations, is needed for rigorous reviews to be conducted. The overall character of qualitative research is described with an emphasis on the tendency of qualitative researchers to explore sensitive topics using theoretically informed methods. A number of specific features of qualitative that require additional ethical attention and awareness are also examined including the following: 1) participants are frequently quite vulnerable and require protection because the data collection methods, such as in-depth interviews, can delve into personally and politically charged matters; 2) naturalistic observation can raise concerns regarding privacy and consent; 3) the potential for the identifiability of the results of this research may require extra efforts to maintain confidentiality. Ultimately, Reseach Ethics Committee members must be knowledgeable about qualitative approaches to be able to assess the potential harms and benefits in a protocol carefully. Without this knowledge gaining ethics approval can be overly difficult for researchers and the best practices for protecting human participants can be overlooked.

  15. The ethics in qualitative health research: special considerations

    Directory of Open Access Journals (Sweden)

    Elizabeth Peter

    2015-09-01

    Full Text Available Abstract A sound knowledge of the nature of qualitative research, along with an appreciation of some special ethical considerations, is needed for rigorous reviews to be conducted. The overall character of qualitative research is described with an emphasis on the tendency of qualitative researchers to explore sensitive topics using theoretically informed methods. A number of specific features of qualitative that require additional ethical attention and awareness are also examined including the following: 1 participants are frequently quite vulnerable and require protection because the data collection methods, such as in-depth interviews, can delve into personally and politically charged matters; 2 naturalistic observation can raise concerns regarding privacy and consent; 3 the potential for the identifiability of the results of this research may require extra efforts to maintain confidentiality. Ultimately, Reseach Ethics Committee members must be knowledgeable about qualitative approaches to be able to assess the potential harms and benefits in a protocol carefully. Without this knowledge gaining ethics approval can be overly difficult for researchers and the best practices for protecting human participants can be overlooked.

  16. Bridging the Measurement Gap Between Research and Clinical Care in Schizophrenia

    DEFF Research Database (Denmark)

    Østergaard, Søren D; Opler, Mark G A; Correll, Christoph U

    2017-01-01

    studies suggest that the much briefer PANSS-6 is a psychometrically valid measure of core positive and negative symptoms of schizophrenia and that the scale is sensitive to symptom improvement following pharmacological treatment. SNAPSI is a brief interview that yields the information needed to rate PANSS......There is currently a "measurement gap" between research and clinical care in schizophrenia. The main reason behind this gap is that the most widely used rating scale in schizophrenia research, the 30-item Positive and Negative Syndrome Scale (PANSS), takes so long to administer that it is rarely......-item PANSS in clinical practice; 2) how the brief, six-item version of the Positive and Negative Syndrome Scale (PANSS-6) was derived empirically from the full 30-item PANSS and what the initial results obtained with PANSS-6 entail; and 3) how PANSS-6 ratings, guided by the newly developed, 15...

  17. Ethical Issues in Addressing Inequity in/through ESL Research

    Science.gov (United States)

    Lee, Ena

    2011-01-01

    This article outlines a researcher's struggles with conducting "ethical" research when her case study reveals racializations faced by a minority teacher in a Canadian ESL program. How might becoming privy to research participants' experiences of inequity in ESL education complicate the notion of research ethics when "doing the right…

  18. Ethics of international clinical research collaboration - the experience of AlloStem.

    Science.gov (United States)

    Chaplin, C

    2006-02-01

    This paper examines the ethics of international clinical collaboration in stem cell research by focusing on the AlloStem project. AlloStem is an international research programme, financed by the European Union under the Sixth Framework Programme, with the aim of advancing the use of stem cells in treating leukaemia and other haematological diseases. Several areas of ethical importance are explored. Research justification and the need to consider both deontological and teleological aspects are examined. Ethical sensitivity in research and the requirement to respond to areas of ethical concern identified by the European Commission, such as the involvement of human beings, the use of human tissue, and the use of animals are also explored. Ethical issues around project structure and management, such as ethical standardization in international research, and achieving set targets are discussed. The ethical importance of dissemination of findings and teaching in clinical research is also considered. Finally, the distribution of benefits is addressed and the importance of distributive justice is emphasized.

  19. Researcher Tales and Research Ethics: The Spaces in Which We Find Ourselves

    Science.gov (United States)

    White, Julie; Fitzgerald, Tanya

    2010-01-01

    The tales we tell here focus on the ethical issues arising from our research practice with vulnerable young participants and those for whom research has been inextricably linked with European imperialism and colonialism. The importance of relational obligations, temporality and potential for a continuing narrative approach to ethical research…

  20. Ethics in published brain-computer interface research

    Science.gov (United States)

    Specker Sullivan, L.; Illes, J.

    2018-02-01

    Objective. Sophisticated signal processing has opened the doors to more research with human subjects than ever before. The increase in the use of human subjects in research comes with a need for increased human subjects protections. Approach. We quantified the presence or absence of ethics language in published reports of brain-computer interface (BCI) studies that involved human subjects and qualitatively characterized ethics statements. Main results. Reports of BCI studies with human subjects that are published in neural engineering and engineering journals are anchored in the rationale of technological improvement. Ethics language is markedly absent, omitted from 31% of studies published in neural engineering journals and 59% of studies in biomedical engineering journals. Significance. As the integration of technological tools with the capacities of the mind deepens, explicit attention to ethical issues will ensure that broad human benefit is embraced and not eclipsed by technological exclusiveness.

  1. 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.

  2. Ethical issues in family violence research in healthcare settings.

    Science.gov (United States)

    Paavilainen, Eija; Lepistö, Sari; Flinck, Aune

    2014-02-01

    Research ethics is always important. However, it is especially crucial with sensitive research topics such as family violence. The aim of this article is to describe and discuss some crucial issues regarding intimate partner violence and child maltreatment, based on the authors' own research experiences. We focus on and discuss examples concerning the definition of family violence, research design, ethical approval, participant recruitment and safety and data collection and processing. During the research process, the significance of teamwork is emphasized. Support provided by the participants to each other and support given by experienced researchers within the team is very important for high ethical standards.

  3. Ethical Challenges embedded in qualitative research interviews with close relatives

    DEFF Research Database (Denmark)

    Haahr, Anita; Norlyk, Annelise; Hall, Elisabeth

    2013-01-01

    Nurse researchers engaged in qualitative interviews with patients and spouses in healthcare may often experience being in unforseen ethical dilemmas. Researchers are guided by the bioethical principles of justice, beneficence, non-maleficence respect for human rights and respect for autonomy...... through the entire research process. However, these principles are not sufficient to prepare researchers for unanticipated ethical dilemmas related to qualitative researchs interviews. We describe and discuss ethically challenging and difficult moments embedded in two cases from our own phenomenological...... interview studies. We argue that qualitative interviews involve navigation between being guided by bioethics as a researcher, being a therapist/nurse and being a fellow human being or even a friend. The researchers' premises to react to unexpected situations and act in a sound ethical manner must...

  4. Knowledge about the research and ethics committee at Makerere ...

    African Journals Online (AJOL)

    Background: All research involving human participants should be reviewed by a competent and independent institutional research and ethics committee. Research conducted at Makerere University College of Health Sciences should be subjected to a rigorous review process by the ethics committee in order to protect ...

  5. Navigating the ethics of cross-cultural health promotion research.

    Science.gov (United States)

    Haintz, Greer Lamaro; Graham, Melissa; McKenzie, Hayley

    2015-12-01

    Health promotion researchers must consider the ethics of their research, and are usually required to abide by a set of ethical requirements stipulated by governing bodies (such as the Australian National Health and Medical Research Council) and human research ethics committees (HRECs). These requirements address both deontological (rule-based) and consequence-based issues. However, at times there can be a disconnect between the requirements of deontological issues and the cultural sensitivity required when research is set in cultural contexts and settings etic to the HREC. This poses a challenge for health promotion researchers who must negotiate between meeting both the requirements of the HREC and the needs of the community with whom the research is being conducted. Drawing on two case studies, this paper discusses examples from cross-cultural health promotion research in Australian and international settings where disconnect arose and negotiation was required to appropriately meet the needs of all parties. The examples relate to issues of participant recruitment and informed consent, participants under the Australian legal age of consent, participant withdrawal when this seemingly occurs in an ad hoc rather than a formal manner and reciprocity. Although these approaches are context specific, they highlight issues for consideration to advance more culturally appropriate practice in research ethics and suggest ways a stronger anthropological lens can be applied to research ethics to overcome these challenges.

  6. Ethical Aspects of Research in Ultrafast Communication

    NARCIS (Netherlands)

    Driessen, A.; Sollie, Paul; Düwell, Marcus

    This chapter summarizes the reflections of a scientist active in optical communication about the need of ethical considerations in technological research. An optimistic definition of ethics, being the art to make good use of technology, is proposed that emphasizes the necessarily involvement of not

  7. From global bioethics to ethical governance of biomedical research collaborations.

    Science.gov (United States)

    Wahlberg, Ayo; Rehmann-Sutter, Christoph; Sleeboom-Faulkner, Margaret; Lu, Guangxiu; Döring, Ole; Cong, Yali; Laska-Formejster, Alicja; He, Jing; Chen, Haidan; Gottweis, Herbert; Rose, Nikolas

    2013-12-01

    One of the features of advanced life sciences research in recent years has been its internationalisation, with countries such as China and South Korea considered 'emerging biotech' locations. As a result, cross-continental collaborations are becoming common generating moves towards ethical and legal standardisation under the rubric of 'global bioethics'. Such a 'global', 'Western' or 'universal' bioethics has in turn been critiqued as an imposition upon resource-poor, non-Western or local medical settings. In this article, we propose that a different tack is necessary if we are to come to grips with the ethical challenges that inter-continental biomedical research collaborations generate. In particular we ask how national systems of ethical governance of life science research might cope with increasingly global research collaborations with a focus on Sino-European collaboration. We propose four 'spheres' - deliberation, regulation, oversight and interaction - as a helpful way to conceptualise national systems of ethical governance. Using a workshop-based mapping methodology (workshops held in Beijing, Shanghai, Changsha, Xian, Shenzen and London) we identified three specific ethical challenges arising from cross-continental research collaborations: (1) ambiguity as to which regulations are applicable; (2) lack of ethical review capacity not only among ethical review board members but also collaborating scientists; (3) already complex, researcher-research subject interaction is further complicated when many nationalities are involved. Copyright © 2013 Elsevier Ltd. All rights reserved.

  8. 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.

  9. Medical ethics research between theory and practice.

    Science.gov (United States)

    ten Have, H A; Lelie, A

    1998-06-01

    The main object of criticism of present-day medical ethics is the standard view of the relationship between theory and practice. Medical ethics is more than the application of moral theories and principles, and health care is more than the domain of application of moral theories. Moral theories and principles are necessarily abstract, and therefore fail to take account of the sometimes idiosyncratic reality of clinical work and the actual experiences of practitioners. Suggestions to remedy the illness of contemporary medical ethics focus on re-establishing the connection between the internal and external morality of medicine. This article discusses the question how to develop a theoretical perspective on medical ethical issues that connects philosophical reflection with the everyday realities of medical practice. Four steps in a comprehensive approach of medical ethics research are distinguished: (1) examine health care contexts in order to obtain a better understanding of the internal morality of these practices; this requires empirical research; (2) analyze and interpret the external morality governing health care practices; sociological study of prevalent values, norms, and attitudes concerning medical-ethical issues is required; (3) creation of new theoretical perspectives on health care practices; Jensen's theory of healthcare practices will be useful here; (4) develop a new conception of bioethics that illuminates and clarifies the complex interaction between the internal and external morality of health care practices. Hermeneutical ethics can be helpful for integrating the experiences disclosed in the empirical ethical studies, as well as utilizing the insights gained from describing the value-contexts of health care practices. For a critical and normative perspective, hermeneutical ethics has to examine and explain the moral experiences uncovered, in order to understand what they tell us.

  10. Ethics of research for patients in pain.

    Science.gov (United States)

    Waisel, David B

    2017-04-01

    This review describes advances in rising and continuing ethical issues in research in patients in pain. Although some of the issues focus directly on pain research, such as research in neonatal pain management, others focus on widespread ethical issues that are relevant to pain research, such as scientific misconduct, deception, placebo use and genomics. Scientific misconduct is more widespread than realized and requires greater awareness of the markers of misconduct like irreproducibility. More education about what qualifies as misconduct, such as consent violations, plagiarism and inappropriate patient recruitment along with data falsification needs to be implemented. Wayward researchers may attend a rehabilitation conference to improve their practices. Studies in neonatal pain management do not require comparing an intervention with the inadequate analgesia of a placebo; comparing with a standard approach is sufficient. Deception of research patients may be acceptable under narrow circumstances. The legitimacy of using broad informed consent for biobanking and genomic studies are being challenged as changes to the Common Rule are being considered. Increasing complexity and the desire to further medical knowledge complicates research methods and informed consent. The ethical issues surrounding these and offshoot areas will continue to develop.

  11. Ethical issues in perinatal mental health research.

    Science.gov (United States)

    Brandon, Anna R; Shivakumar, Geetha; Lee, Simon Craddock; Inrig, Stephen J; Sadler, John Z

    2009-11-01

    To review the background of current ethical standards for the conduct of perinatal mental health research and describe the ethical challenges in this research domain. Current literature reflects a growing sentiment in the scientific community that having no information regarding the impact of psychiatric treatment on the mother and developing fetus/infant poses dangers that may exceed the risks involved in research. However, without sufficient consensus across the scientific community, both regulatory bodies and perinatal researchers find themselves without a framework for decision making that satisfactorily limits the risks and facilitates the benefits of participation of pregnant and lactating women in clinical research. Psychiatric research in perinatal mental health is critically important as it enables clinicians and patients to participate in informed decision-making concerning treatment for psychiatric disorders. Specific areas of concern include fetal safety, maternal risk, the therapeutic misconception, commercial interests, forensic/legal issues, the informed consent process, and study design. Developing guidelines that address ethical challenges and include the views and concerns of multiple stakeholders could improve the access of perinatal women to the benefits of participation in mental health research in addition to providing evidence-based mental healthcare for this subpopulation.

  12. Students' Involvement in Faculty Research: Ethical and Methodological Issues

    Directory of Open Access Journals (Sweden)

    Linda M. Ferguson

    2004-12-01

    Full Text Available Faculty who engage students as participants in their qualitative research often encounter methodological and ethical problems. Ethical issues arise from the fiduciary relationship between faculty and their students, and violations of that relationship occur when the educator has a dual role as researcher with those students. Methodological issues arise from research designs to address these ethical issues. This conflict is particularly evident in faculty research on pedagogy in their own disciplines, for which students are necessary as participants but are captive in the relationship. In this article, the authors explore the issues of double agency when faculty involve students as participants in their research.

  13. Research Ethics I: Responsible Conduct of Research (RCR)--Historical and Contemporary Issues Pertaining to Human and Animal Experimentation

    Science.gov (United States)

    Horner, Jennifer; Minifie, Fred D.

    2011-01-01

    Purpose: In this series of articles--"Research Ethics I", "Research Ethics II", and "Research Ethics III"--the authors provide a comprehensive review of the 9 core domains for the responsible conduct of research (RCR) as articulated by the Office of Research Integrity. In "Research Ethics I", they present a historical overview of the evolution of…

  14. Ethical aspects of registry-based research in the Nordic countries

    Directory of Open Access Journals (Sweden)

    Ludvigsson JF

    2015-11-01

    Full Text Available Jonas F Ludvigsson,1,2 Siri E Håberg,3 Gun Peggy Knudsen,3 Pierre Lafolie,4,5 Helga Zoega,6 Catharina Sarkkola,7 Stephanie von Kraemer,7 Elisabete Weiderpass,1,7–10 Mette Nørgaard11 1Department of Medical Epidemiology and Biostatistics, Karolinska Institutet, Stockholm, 2Department of Pediatrics, Örebro University Hospital, Örebro, Sweden; 3Norwegian Institute of Public Health, Oslo, Norway; 4Department of Medicine, Clinical Pharmacology Unit, 5The Stockholm Regional Ethical Review Board, Karolinska Institutet, Stockholm, Sweden; 6Center of Public Health Sciences, Faculty of Medicine, University of Iceland, Reykjavík, Iceland; 7Genetic Epidemiology Group, Folkhälsan Research Center, Helsinki, Finland; 8Department of Community Medicine, Faculty of Health Sciences, University of Tromsø, 9The Arctic University of Norway, Tromsø, 10Department of Research, Cancer Registry of Norway, Oslo, Norway; 11Department of Clinical Epidemiology, Aarhus University Hospital, Aarhus, Denmark Abstract: National health care registries in the Nordic countries share many attributes, but different legal and ethical frameworks represent a challenge to promoting effective joint research. Internationally, there is a lack of knowledge about how ethical matters are considered in Nordic registry-based research, and a lack of knowledge about how Nordic ethics committees operate and what is needed to obtain an approval. In this paper, we review ethical aspects of registry-based research, the legal framework, the role of ethics review boards in the Nordic countries, and the structure of the ethics application. We discuss the role of informed consent in registry-based research and how to safeguard the integrity of study participants, including vulnerable subjects and children. Our review also provides information on the different government agencies that contribute registry-based data, and a list of the major health registries in Denmark, Finland, Iceland, Norway, and

  15. Many worlds, one ethic: design and development of a global research ethics training curriculum.

    Science.gov (United States)

    Rivera, Roberto; Borasky, David; Rice, Robert; Carayon, Florence

    2005-05-01

    The demand for basic research ethics training has grown considerably in the past few years. Research and education organizations face the challenge of providing this training with limited resources and training tools available. To meet this need, Family Health International (FHI), a U.S.-based international research organization, recently developed a Research Ethics Training Curriculum (RETC). It was designed as a practical, user-friendly tool that provides basic, up-to-date, standardized training on the ethics of human research. The curriculum can easily be adapted to different audiences and training requirements. The RETC was reviewed by a group of international experts and field tested in five countries. It is available in English, French, and Spanish as a three-ring binder and CD-ROM, as well as on the Web. It may be used as either an interactive self-study program or for group training.

  16. Reflexive Research Ethics for Environmental Health and Justice: Academics and Movement-Building

    Science.gov (United States)

    Cordner, Alissa; Ciplet, David; Brown, Phil; Morello-Frosch, Rachel

    2012-01-01

    Community-engaged research on environmental problems has reshaped researcher-participant relationships, academic-community interaction, and the role of community partners in human subjects protection and ethical oversight. We draw on our own and others’ research collaborations with environmental health and justice social movement organizations to discuss the ethical concerns that emerge in community-engaged research. In this paper we introduce the concept of reflexive research ethics: ethical guidelines and decision-making principles that depend on continual reflexivity concerning the relationships between researchers and participants. Seeing ethics in this way can help scientists conduct research that simultaneously achieves a high level of professional conduct and protects the rights, well-being, and autonomy of both researchers and the multiple publics affected by research. We highlight our research with community-based organizations in Massachusetts, California, and Alaska, and discuss the potential impacts of the community or social movement on the research process and the potential impacts of research on community or social movement goals. We conclude by discussing ways in which the ethical concerns that surface in community-engaged research have led to advances in ethical research practices. This type of work raises ethical questions whose answers are broadly relevant for social movement, environmental, and public health scholars. PMID:22690133

  17. Evaluating Research Ethics Training in the Maryland Sea Grant REU Program

    Science.gov (United States)

    Allen, M. R.; Kumi, G. A.; Kumi, B. C.; Moser, F. C.

    2016-02-01

    The NSF's Research Experiences for Undergraduates (REU) program is an opportunity to cultivate responsible research practices in researchers at an early stage in their career. However, teaching responsible research conduct and science ethics in this program has been challenging because of a lack of consensus regarding which instructional methods are most effective for educating students about ethical concepts and establishing the process of ethical decision-making. Over the last 15 years, Maryland Sea Grant's REU ethics program has evolved by exploring different teaching models and looking for ways to effectively engage upper level undergraduates throughout their summer experience in ethical responsibility training. Since 2007, we have adopted a concerted experiential learning approach that includes an ethics seminar, role playing, case studies, and reflection. Currently, our summer long ethics training includes: 1) an interactive seminar; 2) a workshop with role playing and case studies; 3) 1-2 readings; and 4) a roundtable discussion with faculty mentors and their mentees to discuss researchers' real-world experiences with ethical dilemmas. Within the last 3 years, we have expanded our student learning outcomes assessments by administering pre- and post-program surveys to assess ethical skills students acquire through the program. Reevaluations administered three and six years after the REU experience will measure long term effectiveness of the training. Results from the first group of students reveal a greater awareness of ethical issues following our summer program. Students show a high level of competence about "black and white" issues (falsification, fabrication, plagiarism), but are more challenged by ethical "gray areas" such as data ownership and authorship. Results suggest many undergraduates come to research programs with basic ethics training, but benefit from our additional focus on complex ethical dilemmas.

  18. The ethics of animal research: a UK perspective.

    Science.gov (United States)

    Perry, Pauline

    2007-01-01

    The Nuffield Council on Bioethics, an independent body in the United Kingdom, has published a 2005 report titled The Ethics of Research Involving Animals. The Report, produced by a Working Party that represented a wide range of views, seeks to clarify the debate that surrounds this topic and aims to help people identify and analyze the relevant scientific and ethical issues. The Working Party considered the arguments surrounding whether animal research yields useful results, and recommends that its predictability and transferability should be evaluated more fully, particularly in controversial areas. Commonly encountered ethical questions and arguments were considered in order to understand what lies behind disagreement on the moral justification of animal research. Four possible ethical positions on animal research, which represent points on a continuum, are described. Despite the range of views that exist among members of the Working Party, the Report presents a "Consensus Statement" that identifies agreement on several important issues. Building on this statement, recommendations are made for improving the quality of the debate and promoting the 3Rs (refinement, reduction, and replacement).

  19. Ethics in family violence research: cross-cultural issues.

    Science.gov (United States)

    Fontes, L A

    1998-01-01

    This article examines ethical issues in cross-cultural research on family violence. It suggests ways for researchers to increase understanding and avoid abuses of power. Special attention to informed consent, definition of the sample, composition of the research team, research methods, and potential harm and benefit are considered key to designing ethical cross-cultural research. The discussion is illustrated with examples from the literature and from the author's experiences conducting research on sexual abuse in a shanty town in Chile and with Puerto Ricans in the U.S.

  20. Ethical Issues in the Use of Humans for Research.

    Science.gov (United States)

    Bashaw, W. L.

    The APA Ethical Principles, the University of Georgia policy, standard research texts, and research literature on specific methodologies, all in relation to ethical issues in human research, are discussed. The 10 APA principles state, in essence, that the investigator is responsible for what happens, that confidentiality and the protection of the…

  1. Ethical issues in research involving children and young people

    International Nuclear Information System (INIS)

    Scally, Andy

    2014-01-01

    This article identifies the key ethical issues that need to be addressed in any research study involving children and young people, accessed through the NHS. It makes specific reference to the Declaration of Helsinki and to additional guidance developed for researchers from a variety of disciplines, both within healthcare and in other fields of study. The focus of the paper is on defining the key ethical issues, identifying the complexities in the legislative framework underpinning research involving this patient group and offering practical advice on when, and how, ethical approval needs to be sought

  2. Empirical research in medical ethics: How conceptual accounts on normative-empirical collaboration may improve research practice

    Science.gov (United States)

    2012-01-01

    Background The methodology of medical ethics during the last few decades has shifted from a predominant use of normative-philosophical analyses to an increasing involvement of empirical methods. The articles which have been published in the course of this so-called 'empirical turn' can be divided into conceptual accounts of empirical-normative collaboration and studies which use socio-empirical methods to investigate ethically relevant issues in concrete social contexts. Discussion A considered reference to normative research questions can be expected from good quality empirical research in medical ethics. However, a significant proportion of empirical studies currently published in medical ethics lacks such linkage between the empirical research and the normative analysis. In the first part of this paper, we will outline two typical shortcomings of empirical studies in medical ethics with regard to a link between normative questions and empirical data: (1) The complete lack of normative analysis, and (2) cryptonormativity and a missing account with regard to the relationship between 'is' and 'ought' statements. Subsequently, two selected concepts of empirical-normative collaboration will be presented and how these concepts may contribute to improve the linkage between normative and empirical aspects of empirical research in medical ethics will be demonstrated. Based on our analysis, as well as our own practical experience with empirical research in medical ethics, we conclude with a sketch of concrete suggestions for the conduct of empirical research in medical ethics. Summary High quality empirical research in medical ethics is in need of a considered reference to normative analysis. In this paper, we demonstrate how conceptual approaches of empirical-normative collaboration can enhance empirical research in medical ethics with regard to the link between empirical research and normative analysis. PMID:22500496

  3. Ethical considerations in biomedical research: a personal view.

    Science.gov (United States)

    Dahlöf, Carl

    2013-06-01

    Ethical considerations are made when an experiment is planned and take a regulatory system of moral principles into account. Ethical considerations should first and foremost be made in order to protect the individual subject/animal from being exposed to any unethical and perhaps even illegal intervention and to ensure that the experimental conditions used are appropriate. The main role of research ethics committees is to assess the scientific and ethical aspects of submitted protocols and follow up the trial until its closure.

  4. The normative background of empirical-ethical research: first steps towards a transparent and reasoned approach in the selection of an ethical theory.

    Science.gov (United States)

    Salloch, Sabine; Wäscher, Sebastian; Vollmann, Jochen; Schildmann, Jan

    2015-04-04

    Empirical-ethical research constitutes a relatively new field which integrates socio-empirical research and normative analysis. As direct inferences from descriptive data to normative conclusions are problematic, an ethical framework is needed to determine the relevance of the empirical data for normative argument. While issues of normative-empirical collaboration and questions of empirical methodology have been widely discussed in the literature, the normative methodology of empirical-ethical research has seldom been addressed. Based on our own research experience, we discuss one aspect of this normative methodology, namely the selection of an ethical theory serving as a background for empirical-ethical research. Whereas criteria for a good ethical theory in philosophical ethics are usually related to inherent aspects, such as the theory's clarity or coherence, additional points have to be considered in the field of empirical-ethical research. Three of these additional criteria will be discussed in the article: (a) the adequacy of the ethical theory for the issue at stake, (b) the theory's suitability for the purposes and design of the empirical-ethical research project, and (c) the interrelation between the ethical theory selected and the theoretical backgrounds of the socio-empirical research. Using the example of our own study on the development of interventions which support clinical decision-making in oncology, we will show how the selection of an ethical theory as a normative background for empirical-ethical research can proceed. We will also discuss the limitations of the procedures chosen in our project. The article stresses that a systematic and reasoned approach towards theory selection in empirical-ethical research should be given priority rather than an accidental or implicit way of choosing the normative framework for one's own research. It furthermore shows that the overall design of an empirical-ethical study is a multi-faceted endeavor which has to

  5. Clinical research ethics review process in Lebanon: efficiency and functions of research ethics committees - results from a descriptive questionnaire-based study.

    Science.gov (United States)

    Atallah, David; Moubarak, Malak; El Kassis, Nadine; Abboud, Sara

    2018-01-11

    Clinical trials conducted in Lebanon are increasing. However, little is known about the performance of research ethics committees (RECs) in charge of reviewing the research protocols. This study aimed to assess the level of adherence to the ethics surrounding the conduct of clinical trials and perceptions of team members regarding roles of the RECs during the conduct of clinical trials in Lebanon. The research question was: Are RECs adherent to the ethics surrounding the conduct of clinical trials (chapters II and IV in 'Standards and Operational Guidance for Ethics Review of Health-related Research with Human Participants' in Lebanon?' This was a quantitative and descriptive questionnaire-based study conducted among RECs of university hospitals in Lebanon. The questionnaire had to be completed online and included general questions in addition to items reflecting the different aspects of a REC performance and effectiveness. All the questionnaire was assigned a total score of 175 points. General information and questions assigned point values/scores were analysed using descriptive statistics: frequency and percentage, mean score ± standard deviation. Ten RECs participated in the study (52 persons: four chairs, one vice-president, 47 ordinary members). Forty-seven (90.4%) had previous experience with clinical research and 30 (57.7%) had a diploma or had done a training in research ethics. Forty-one percent confirmed that they were required to have a training in research ethics. All RECs had a policy for disclosing and managing potential conflicts of interest for its members, but 71.8% of participants reported the existence of such a policy for researchers. Thirty-three point three percent reported that the RECs had an anti-bribery policy. The questionnaire mean score was 129.6 ± 22.3/175 points reflecting thus an excellent adherence to international standards. Inadequate training of REC members and the lack of anti-bribery policies should be resolved to

  6. Justice in human research ethics. A conceptual and practical guide.

    Science.gov (United States)

    Pieper, Ian; Thomson, Colin J H

    2013-03-01

    One of the core values to be applied by a body reviewing the ethics of human research is justice. The inclusion of justice as a requirement in the ethical review of human research is relatively recent and its utility had been largely unexamined until debates arose about the conduct of international biomedical research in the late 1990s. The subsequent amendment of authoritative documents in ways that appeared to shift the meaning of conceptions of justice generated a great deal of controversy. Another difficulty has been that both the theory and the substance of justice that are applied by researchers or reviewers can be frequently seen to be subjective. Both the concept of justice--hether distributive or commutative--and what counts as a just distribution or exchange--are given different weight and meanings by different people. In this paper, the origins and more recent debates about the requirement to consider justice as a criterion in the ethical review of human research are traced, relevant conceptions of justice are distinguished, and the manner in which they can be applied meaningfully in the ethical review of all human research is identified. We also explain the way that these concepts are articulated in, and the intent and function of, specific paragraphs of the National Statement on Ethical Conduct in Human Research (2007). The National Statement identifies a number of issues that should be considered when a human research ethics committee is reviewing the justice aspects of an application. We provide guidance to researchers as to how they can show that there is a fair distribution of burdens and benefits in the participant experience and the research outcomes. We also provide practical guidance to researches on how to think through issues of justice so that they can demonstrate that the design of their research projects meets this ethical requirement.

  7. Are students kidding with health research ethics? The case of HIV/AIDS research in Cameroon

    Directory of Open Access Journals (Sweden)

    Munung Nchangwi

    2012-06-01

    Full Text Available Abstract Background Universities in Cameroon are playing an active part in HIV/AIDS research and much of this research is carried out by students, usually for the purpose of a dissertation/thesis. Student theses/dissertations present research findings in a much more comprehensive manner and have been described as the stepping-stone of a budding scientist’s potential in becoming an independent researcher. It is therefore important to verify how students handle issues of research ethics. Method Theses/dissertations on HIV/AIDS that described research studies involving the use of human research participants were screened to verify if research ethics approval and informed consent were obtained and documented. The contents of the consent forms were also qualitatively analyzed. Results Of 174 theses/dissertations on HIV, ethics approval was documented in 17 (9.77% and informed consent in 77 (47.83%. Research ethics approval was first mentioned at all in 2002 and highly reported in the year 2007. Evidence of ethics approval was found for the first time in 2005 and informed consent first observed and evidenced in 1997. Ethics approval was mostly reported by students studying for an MD (14.01% and was not reported in any Bachelors’ degree dissertation. Informed consent was also highly reported in MD theses (64.58% followed by undergraduate theses (31.58%. Voluntary participation and potential benefits of the study were some of the common aspects dealt with in most of the consent forms. The right to discontinue participation in the study and management of residual samples were scarcely ever mentioned. Conclusions Overall, and given the current state of the art of research ethics around the world, student-scientists in Cameroon would seem to be merely kidding with research ethics. It is thus essential that training in health research ethics (HRE be incorporated in the curriculum of universities in Cameroon in order that the next generation of

  8. Research Involving Health Providers and Managers: Ethical Issues Faced by Researchers Conducting Diverse Health Policy and Systems Research in Kenya.

    Science.gov (United States)

    Molyneux, Sassy; Tsofa, Benjamin; Barasa, Edwine; Nyikuri, Mary Muyoka; Waweru, Evelyn Wanjiku; Goodman, Catherine; Gilson, Lucy

    2016-12-01

    There is a growing interest in the ethics of Health Policy and Systems Research (HPSR), and especially in areas that have particular ethical salience across HPSR. Hyder et al (2014) provide an initial framework to consider this, and call for more conceptual and empirical work. In this paper, we respond by examining the ethical issues that arose for researchers over the course of conducting three HPSR studies in Kenya in which health managers and providers were key participants. All three studies involved qualitative work including observations and individual and group interviews. Many of the ethical dilemmas researchers faced only emerged over the course of the fieldwork, or on completion, and were related to interactions and relationships between individuals operating at different levels or positions in health/research systems. The dilemmas reveal significant ethical challenges for these forms of HPSR, and show that potential 'solutions' to dilemmas often lead to new issues and complications. Our experiences support the value of research ethics frameworks, and suggest that these can be enriched by incorporating careful consideration of context embedded social relations into research planning and conduct. Many of these essential relational elements of ethical practice, and of producing quality data, are given stronger emphasis in social science research ethics than in epidemiological, clinical or biomedical research ethics, and are particularly relevant where health systems are understood as social and political constructs. We conclude with practical and research implications. © 2016 The Authors Developing World Bioethics Published by John Wiley & Sons Ltd.

  9. 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.

  10. Ethics and community-based participatory research: perspectives from the field.

    Science.gov (United States)

    Bastida, Elena M; Tseng, Tung-Sung; McKeever, Corliss; Jack, Leonard

    2010-01-01

    Exploring the importance of ethical issues in the conduct of community-based participatory research (CBPR) continues to be an important topic for researchers and practitioners. This article uses the Beyond Sabor Project, a CBPR project implemented in the Lower Rio Grande Valley, as a case example to discuss ethical issues such as the importance of increasing community involvement in research, ensuring that communities benefit from the research, sharing leadership roles, and sensitive issues regarding data collection and sharing. Thereafter, this article concludes with a brief discussion of six principles that can inform the practice of ethical conduct when implementing CBPR studies. This article also lists additional reading resources on the importance of ethics in the conduct of CBPR.

  11. Clinical research ethics in Irish healthcare: diversity, dynamism and medicalization.

    LENUS (Irish Health Repository)

    Condell, Sarah L

    2012-11-01

    Gaining ethical clearance to conduct a study is an important aspect of all research involving humans but can be time-consuming and daunting for novice researchers. This article stems from a larger ethnographic study that examined research capacity building in Irish nursing and midwifery. Data were collected over a 28-month time frame from a purposive sample of 16 nurse or midwife research fellows who were funded to undertake full-time PhDs. Gaining ethical clearance for their studies was reported as an early \\'rite of passage\\' in the category of \\'labouring the doctorate\\'. This article penetrates the complexities in Irish clinical research ethics by describing the practices these nurse and midwife researchers encountered and the experiences they had. The key issue of representation that occurred in the context of \\'medicalized\\' research ethics is further explored including its meaning for nursing or midwifery research.

  12. A Study on an Effective Education Strategy for Enhancing the Researcher's Ethics

    Energy Technology Data Exchange (ETDEWEB)

    Min, Byung-Joo; Hwang, In-A; Choi, Sun-Yeong; Kwon, Hyuk; Lee, Dae Sung; Yoo, Jae-Bok

    2007-12-15

    Pressure on the researcher has been increased by R and D competition and outcome-oriented evaluation system in the circumstance of increased R and D investment of government and high speed of technological development. Education for research ethics and conscience is more needed for the purpose of researcher's healthy and sound research attitude in this high pressured research environment. This textbook and educational module for research ethics are produced in order to satisfy the need. The text book, 'practical research ethics', is consisted of three chapters. Chapter one, Consciousness of the Research Ethics, deals with the background, definition, and importance of the ethics. Second chapter, Communion, discusses responsible research attitudes, and verification process under research ethical guideline. Chapter 3, Practice of Research Ethics, demonstrates practical guideline. Code and Rules of Ministry of Science and Technology related with the issues and foreign cases are compiled in appendix. Educational module for the textbook includes diverse materials, examples, and video. Educational technique for the module adopts participants' discussion, case analysis, and brain-storming. Applying the textbook and education module into each R and D Institute and academy is expected with suitable modification of each situation. The process will bring up internal discussion and consensus on the research ethics. Case analysis and composing network for practical adopting process will be the next step of this study.

  13. A Study on an Effective Education Strategy for Enhancing the Researcher's Ethics

    International Nuclear Information System (INIS)

    Min, Byung-Joo; Hwang, In-A; Choi, Sun-Yeong; Kwon, Hyuk; Lee, Dae Sung; Yoo, Jae-Bok

    2007-12-01

    Pressure on the researcher has been increased by R and D competition and outcome-oriented evaluation system in the circumstance of increased R and D investment of government and high speed of technological development. Education for research ethics and conscience is more needed for the purpose of researcher's healthy and sound research attitude in this high pressured research environment. This textbook and educational module for research ethics are produced in order to satisfy the need. The text book, 'practical research ethics', is consisted of three chapters. Chapter one, Consciousness of the Research Ethics, deals with the background, definition, and importance of the ethics. Second chapter, Communion, discusses responsible research attitudes, and verification process under research ethical guideline. Chapter 3, Practice of Research Ethics, demonstrates practical guideline. Code and Rules of Ministry of Science and Technology related with the issues and foreign cases are compiled in appendix. Educational module for the textbook includes diverse materials, examples, and video. Educational technique for the module adopts participants' discussion, case analysis, and brain-storming. Applying the textbook and education module into each R and D Institute and academy is expected with suitable modification of each situation. The process will bring up internal discussion and consensus on the research ethics. Case analysis and composing network for practical adopting process will be the next step of this study

  14. Procedure versus process: ethical paradigms and the conduct of qualitative research.

    Science.gov (United States)

    Pollock, Kristian

    2012-09-27

    Research is fundamental to improving the quality of health care. The need for regulation of research is clear. However, the bureaucratic complexity of research governance has raised concerns that the regulatory mechanisms intended to protect participants now threaten to undermine or stifle the research enterprise, especially as this relates to sensitive topics and hard to reach groups. Much criticism of research governance has focused on long delays in obtaining ethical approvals, restrictions imposed on study conduct, and the inappropriateness of evaluating qualitative studies within the methodological and risk assessment frameworks applied to biomedical and clinical research. Less attention has been given to the different epistemologies underlying biomedical and qualitative investigation. The bioethical framework underpinning current regulatory structures is fundamentally at odds with the practice of emergent, negotiated micro-ethics required in qualitative research. The complex and shifting nature of real world settings delivers unanticipated ethical issues and (occasionally) genuine dilemmas which go beyond easy or formulaic 'procedural' resolution. This is not to say that qualitative studies are 'unethical' but that their ethical nature can only be safeguarded through the practice of 'micro-ethics' based on the judgement and integrity of researchers in the field. This paper considers the implications of contrasting ethical paradigms for the conduct of qualitative research and the value of 'empirical ethics' as a means of liberating qualitative (and other) research from an outmoded and unduly restrictive research governance framework based on abstract prinicipalism, divorced from real world contexts and values.

  15. Ethical muscle and scientific interests: a role for philosophy in scientific research.

    Science.gov (United States)

    Kaposy, Chris

    2008-03-01

    Ethics, a branch of philosophy, has a place in the regulatory framework of human subjects research. Sometimes, however, ethical concepts and arguments play a more central role in scientific activity. This can happen, for example, when violations of research norms are also ethical violations. In such a situation, ethical arguments can be marshaled to improve the quality of the scientific research. I explore two different examples in which philosophers and scientists have used ethical arguments to plead for epistemological improvements in the conduct of research. The first example deals with research dishonesty in pharmaceutical development. The second example is concerned with neuropsychological research using fMRI technology.

  16. Feminist and community psychology ethics in research with homeless women.

    Science.gov (United States)

    Paradis, E K

    2000-12-01

    This paper presents a feminist and community psychology analysis of ethical concerns that can arise throughout the process of doing research with women who are homeless. The unique contexts of the lives of women who are homeless demand that researchers redefine traditional ethical constructs such as consent, privacy, harm, and bias. Research that fails to do this may perpetuate the stereotyping, marginalization, stigmatization, and victimization homeless women face. Feminist and community research ethics must go beyond the avoidance of harm to an active investment in the well-being of marginalized individuals and communities. Using feminist and community psychology ethics, this paper addresses some common problems in research with women who are homeless, and argues for the transformation of research from a tool for the advancement of science into a strategy for the empowerment of homeless women and their communities.

  17. [Research Ethics in Partnership with Benin : A call for Solidarity].

    Science.gov (United States)

    Bergeron, Michel

    2017-05-22

    Over the last decade, research ethics has developed in Benin partly through a partnership with Quebec. This partnership has evolved using TCPS2, the Canadian framework in research ethics. In doing so, three main values were put forward : respect for human dignity, respect for cultural diversity and solidarity. Over that time period, research ethics in Benin has structured through new Research Ethics Committees (REC) and though participation of those involved in research with human beings. REC members, researchers and students have acquired the needed tools to resolve most of the ethical dilemmas that could arise in the future making it one of the positive results of this partnership. Retrospectively, it has also been a situation where the Van Rensselaer Potter's perspective on bioethics has emerged in a French-speaking context where the spoken language and the French cultural approach is of great importance.

  18. Painful dilemmas: the ethics of animal-based pain research

    DEFF Research Database (Denmark)

    Magalhães-Sant'Ana, M.; Sandøe, Peter; Olsson, I. A. S.

    2009-01-01

    While it has the potential to deliver important human benefits, animal-based pain research raises ethical questions, because it involves inducing pain in sentient beings. Ethical decision-making, connected with this variety of research, requires informed harm-benefit analysis, and the aim of this...

  19. Measuring inconsistency in research ethics committee review.

    Science.gov (United States)

    Trace, Samantha; Kolstoe, Simon Erik

    2017-11-28

    The review of human participant research by Research Ethics Committees (RECs) or Institutional Review Boards (IRBs) is a complex multi-faceted process that cannot be reduced to an algorithm. However, this does not give RECs/ IRBs permission to be inconsistent in their specific requirements to researchers or in their final opinions. In England the Health Research Authority (HRA) coordinates 67 committees, and has adopted a consistency improvement plan including a process called "Shared Ethical Debate" (ShED) where multiple committees review the same project. Committee reviews are compared for consistency by analysing the resulting minutes. We present a description of the ShED process. We report an analysis of minutes created by research ethics committees participating in two ShED exercises, and compare them to minutes produced in a published "mystery shopper" exercise. We propose a consistency score by defining top themes for each exercise, and calculating the ratio between top themes and total themes identified by each committee for each ShED exercise. Our analysis highlights qualitative differences between the ShED 19, ShED 20 and "mystery shopper" exercises. The quantitative measure of consistency showed only one committee across the three exercises with more than half its total themes as top themes (ratio of 0.6). The average consistency scores for the three exercises were 0.23 (ShED19), 0.35 (ShED20) and 0.32 (mystery shopper). There is a statistically significant difference between the ShED 19 exercise, and the ShED 20 and mystery shopper exercises. ShED exercises are effective in identifying inconsistency between ethics committees and we describe a scoring method that could be used to quantify this. However, whilst a level of inconsistency is probably inevitable in research ethics committee reviews, studies must move beyond the ShED methodology to understand why inconsistency occurs, and what an acceptable level of inconsistency might be.

  20. Ethical considerations when employing fake identities in online social networks for research.

    Science.gov (United States)

    Elovici, Yuval; Fire, Michael; Herzberg, Amir; Shulman, Haya

    2014-12-01

    Online social networks (OSNs) have rapidly become a prominent and widely used service, offering a wealth of personal and sensitive information with significant security and privacy implications. Hence, OSNs are also an important--and popular--subject for research. To perform research based on real-life evidence, however, researchers may need to access OSN data, such as texts and files uploaded by users and connections among users. This raises significant ethical problems. Currently, there are no clear ethical guidelines, and researchers may end up (unintentionally) performing ethically questionable research, sometimes even when more ethical research alternatives exist. For example, several studies have employed "fake identities" to collect data from OSNs, but fake identities may be used for attacks and are considered a security issue. Is it legitimate to use fake identities for studying OSNs or for collecting OSN data for research? We present a taxonomy of the ethical challenges facing researchers of OSNs and compare different approaches. We demonstrate how ethical considerations have been taken into account in previous studies that used fake identities. In addition, several possible approaches are offered to reduce or avoid ethical misconducts. We hope this work will stimulate the development and use of ethical practices and methods in the research of online social networks.

  1. Operational effectiveness of blended e-learning program for nursing research ethics.

    Science.gov (United States)

    Cho, Kap-Chul; Shin, Gisoo

    2014-06-01

    Since 2006, the Korean Ministry of Education, Science and Technology, and the National Research Foundation of Korea have taken the lead in developing an institutional guideline for research ethics. The purpose was to identify the effectiveness of the Good Research Practice program, developed on a fund granted by the National Research Foundation of Korea, for nurses and nursing students whose knowledge and perception of research ethics were compared before and after the implementation of the Good Research Practice program. This study was conducted to compare the levels of knowledge and perception of research ethics in the participants before and after the program was implemented. The participants included 45 nurses and 69 nursing students from hospitals, colleges of nursing, and the Korean Nurses Association, located in Seoul, Korea. This study was approved by the Institutional Research Board in Korea. Based on the Analysis, Design, Development, Implementation, and Evaluation model, the Good Research Practice program was made up of a total of 30 h of the blended learning both online and off-line. The results of this study showed that there were statistically significant differences in both knowledge and perception of research ethics in nursing students and nurses before and after the program had been implemented. The concepts of professional nursing ethics, moral issues, and bioethics were often confused with one another and not clearly defined. Therefore, the concept and scope of bioethics, moral judgment, and overall nursing ethics should be well defined and conceptualized in the future. This study suggested integrating research ethics education in the nursing curriculum as a required course of study for nursing students and as part of the in-service training program for nurses in order to improve research ethics in nursing research in Korea. © The Author(s) 2013.

  2. Private-sector research ethics: marketing or good conflicts management? The 2005 John J. Conley Lecture on Medical Ethics.

    Science.gov (United States)

    Dresser, Rebecca

    2006-01-01

    Pharmaceutical companies are major sponsors of biomedical research. Most scholars and policymakers focus their attention on government and academic oversight activities, however. In this article, I consider the role of pharmaceutical companies' internal ethics statements in guiding decisions about corporate research and development (R&D). I review materials from drug company websites and contributions from the business and medical ethics literature that address ethical responsibilities of businesses in general and pharmaceutical companies in particular. I discuss positive and negative uses of pharmaceutical companies' ethics materials and describe shortcomings in the companies' existing ethics programs. To guide employees and reassure outsiders, companies must add rigor, independence, and transparency to their R&D ethics programs.

  3. Resisting the seduction of "ethics creep": using Foucault to surface complexity and contradiction in research ethics review.

    Science.gov (United States)

    Guta, Adrian; Nixon, Stephanie A; Wilson, Michael G

    2013-12-01

    In this paper we examine "ethics creep", a concept developed by Haggerty (2004) to account for the increasing bureaucratization of research ethics boards and institutional review boards (REB/IRBs) and the expanding reach of ethics review. We start with an overview of the recent surge of academic interest in ethics creep and similar arguments about the prohibitive effect of ethics review. We then introduce elements of Michel Foucault's theoretical framework which are used to inform our analysis of empirical data drawn from a multi-phase study exploring the accessibility of community-engaged research within existing ethics review structures in Canada. First, we present how ethics creep emerged both explicitly and implicitly in our data. We then present data that demonstrate how REB/IRBs are experiencing their own form of regulation. Finally, we present data that situate ethics review alongside other trends affecting the academy. Our results show that ethics review is growing in some ways while simultaneously being constrained in others. Drawing on Foucauldian theory we reframe ethics creep as a repressive hypothesis which belies the complexity of the phenomenon it purports to explain. Our discussion complicates ethics creep by proposing an understanding of REB/IRBs that locates them at the intersection of various neoliberal discourses about the role of science, ethics, and knowledge production. Copyright © 2012 Elsevier Ltd. All rights reserved.

  4. In defence of governance: ethics review and social research.

    Science.gov (United States)

    Sheehan, Mark; Dunn, Michael; Sahan, Kate

    2017-10-10

    There is a growing body of literature that has sought to undermine systems of ethical regulation, and governance more generally, within the social sciences. In this paper, we argue that any general claim for a system of research ethics governance in social research depends on clarifying the nature of the stake that society has in research. We show that certain accounts of this stake-protecting researchers' freedoms; ensuring accountability for resources; safeguarding welfare; and supporting democracy-raise relevant ethical considerations that are reasonably contested. However, these accounts cannot underpin a general claim in favour of, or against, a system of research ethics governance. Instead, we defend governance in social research on the grounds that research, as an institutionalised form of enquiry, is a constitutive element of human flourishing, and that society ought to be concerned with the flourishing of its members. We conclude by considering the governance arrangements that follow from, and are justified by, our arguments. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

  5. A Bicultural Researcher's Reflections on Ethical Research Practices With Muslim Immigrant Women: Merging Boundaries and Challenging Binaries.

    Science.gov (United States)

    Salma, Jordana; Ogilvie, Linda; Keating, Norah; Hunter, Kathleen F

    Bicultural researchers are well positioned to identify tensions, disrupt binaries of positions, and reconcile differences across cultural contexts to ensure ethical research practices. This article focuses on a bicultural researcher's experiences of ethically important moments in research activities with Muslim immigrant women. Three ethical principles of respect, justice, and concern for welfare are highlighted, revealing the implications of binary constructions of identity, the value of situated knowledge in creating ethical research practices, and the need to recognize agency as a counterforce to oppressive narratives about Muslim women.

  6. Ethics research in critically ill patients.

    Science.gov (United States)

    Estella, A

    2018-05-01

    Research in critical care patients is an ethical obligation. The ethical conflicts of intensive care research arise from patient vulnerability, since during ICU admission these individuals sometimes lose all or part of their decision making capacity and autonomy. We therefore must dedicate effort to ensure that neither treatment (sedation or mechanical ventilation) nor the disease itself can affect the right to individual freedom of the participants in research, improving the conditions under which informed consent must be obtained. Fragility, understood as a decrease in the capacity to tolerate adverse effects derived from research must be taken into account in selecting the participants. Research should be relevant, not possible to carry out in non-critical patients, and a priori should offer potential benefits that outweigh the risks that must be known and assumable, based on principles of responsibility. Copyright © 2018 Elsevier España, S.L.U. y SEMICYUC. All rights reserved.

  7. Too much information: visual research ethics in the age of wearable cameras.

    Science.gov (United States)

    Mok, Tze Ming; Cornish, Flora; Tarr, Jen

    2015-06-01

    When everything you see is data, what ethical principles apply? This paper argues that first-person digital recording technologies challenge traditional institutional approaches to research ethics, but that this makes ethics governance more important, not less so. We review evolving ethical concerns across four fields: Visual ethics; ubiquitous computing; mobile health; and grey literature from applied or market research. Collectively, these bodies of literature identify new challenges to traditional notions of informed consent, anonymity, confidentiality, privacy, beneficence and maleficence. Challenges come from the ever-increasing power, breadth and multi-functional integration of recording technologies, and the ubiquity and normalization of their use by participants. Some authors argue that these evolving relationships mean that institutional ethics governance procedures are irrelevant or no longer apply. By contrast, we argue that the fundamental principles of research ethics frameworks have become even more important for the protection of research participants, and that institutional frameworks need to adapt to keep pace with the ever-increasing power of recording technologies and the consequent risks to privacy. We conclude with four recommendations for efforts to ensure that contemporary visual recording research is held appropriately accountable to ethical standards: (i) minimizing the detail, scope, integration and retention of captured data, and limiting its accessibility; (ii) formulating an approach to ethics that takes in both the 'common rule' approaches privileging anonymity and confidentiality together with principles of contextual judgement and consent as an ongoing process; (iii) developing stronger ethical regulation of research outside academia; (iv) engaging the public and research participants in the development of ethical guidelines.

  8. Clinical governance and research ethics as barriers to UK low-risk population-based health research?

    Directory of Open Access Journals (Sweden)

    Douglas Flora

    2008-11-01

    Full Text Available Abstract Background Since the Helsinki Declaration was introduced in 1964 as a code of practice for clinical research, it has generally been agreed that research governance is also needed in the field of public health and health promotion research. Recently, a range of factors led to the development of more stringent bureaucratic procedures, governing the conduct of low-risk population-based health research in the United Kingdom. Methods Our paper highlights a case study of the application process to medical research ethics committees in the United Kingdom for a study of the promotion of physical activity by health care providers. The case study presented here is an illustration of the challenges in conducting low-risk population-based health research. Results Our mixed-methods approach involved a questionnaire survey of and semi-structured interviews with health professionals (who were all healthy volunteers. Since our study does not involve the participation of either patients or the general population, one would expect the application to the relevant research ethics committees to be a formality. This proved not to be the case! Conclusion Research ethics committees could be counter-productive, rather than protecting the vulnerable in the research process, they can stifle low-risk population-based health research. Research ethics in health services research is first and foremost the responsibility of the researcher(s, and we need to learn to trust health service researchers again. The burden of current research governance regulation to address the perceived ethical problems is neither appropriate nor adequate. Senior researchers/academics need to educate and train students and junior researchers in the area of research ethics, whilst at the same time reducing pressures on them that lead to unethical research, such as commercial funding, inappropriate government interference and the pressure to publish. We propose that non-invasive low

  9. Ethics in action: Approving and improving medical research with human subjects

    NARCIS (Netherlands)

    de Jong, J.P.

    2013-01-01

    In this thesis, Jean Philippe de Jong presents a new understanding of ethical oversight on medical research with human subjects and proposes that two philosophies for ethical oversight exist: '(dis)approving' and 'improving'. Systems for ethical oversight on medical research have been in place for

  10. How to depolarise the ethical debate over human embryonic stem cell research (and other ethical debates too!).

    Science.gov (United States)

    Espinoza, Nicolas; Peterson, Martin

    2012-08-01

    The contention of this paper is that the current ethical debate over embryonic stem cell research is polarised to an extent that is not warranted by the underlying ethical conflict. It is argued that the ethical debate can be rendered more nuanced, and less polarised, by introducing non-binary notions of moral rightness and wrongness. According to the view proposed, embryonic stem cell research--and possibly other controversial activities too--can be considered 'a little bit right and a little bit wrong'. If this idea were to become widely accepted, the ethical debate would, for conceptual reasons, become less polarised.

  11. Ethical issues in international biomedical research: an overview.

    Science.gov (United States)

    Page, Alice K

    2004-01-01

    Human subjects research has been the focus of numerous controversies over the years. The dilemma lies between the potential harm to individuals who participate in research and the knowledge to be gained from the research study that might benefit society. When research is conducted in developing countries by researchers and sponsors from the United States and other industrialized countries, differences in history, culture, politics, wealth, and power between the countries give rise to unique challenges. In this Article, the author identifies several ethical issues to be considered when research is conducted in developing countries and provides the legal and ethical framework for their resolution.

  12. Virtue ethics, positive psychology, and a new model of science and engineering ethics education.

    Science.gov (United States)

    Han, Hyemin

    2015-04-01

    This essay develops a new conceptual framework of science and engineering ethics education based on virtue ethics and positive psychology. Virtue ethicists and positive psychologists have argued that current rule-based moral philosophy, psychology, and education cannot effectively promote students' moral motivation for actual moral behavior and may even lead to negative outcomes, such as moral schizophrenia. They have suggested that their own theoretical framework of virtue ethics and positive psychology can contribute to the effective promotion of motivation for self-improvement by connecting the notion of morality and eudaimonic happiness. Thus this essay attempts to apply virtue ethics and positive psychology to science and engineering ethics education and to develop a new conceptual framework for more effective education. In addition to the conceptual-level work, this essay suggests two possible educational methods: moral modeling and involvement in actual moral activity in science and engineering ethics classes, based on the conceptual framework.

  13. The ethics of wildlife research: a nine R theory.

    Science.gov (United States)

    Curzer, Howard J; Wallace, Mark C; Perry, Gad; Muhlberger, Peter J; Perry, Dan

    2013-01-01

    The commonsense ethical constraints on laboratory animal research known as the three Rs are widely accepted, but no constraints tailored to research on animals in the wild are available. In this article, we begin to fill that gap. We sketch a set of commonsense ethical constraints on ecosystem research parallel to the constraints that govern laboratory animal research. Then we combine the animal and ecosystem constraints into a single theory to govern research on animals in the wild.

  14. The Ethics of Qualitative Nursing Research.

    Science.gov (United States)

    Robley, Lois R.

    1995-01-01

    Ethical issues in qualitative nursing research include the following: what to study, which participants, what methods, how to achieve informed consent, when to terminate interviews and when to probe, when treatment should supersede research, and what and how to document in case studies. (SK)

  15. Health impacts and research ethics in female trafficking.

    Science.gov (United States)

    Dhital, S R; Aro, R A; Sapkota, K

    2011-04-01

    Female trafficking is a social and public health problem, associated with physical and sexual abuse, psychological trauma, injuries from violence, sexually transmitted infections, adverse reproductive outcomes and substance misuse. It faces several challenges ranging from the hidden nature of the problem to ethical and human rights issues. The objectives of this paper are to analyze health impact of trafficking; ethical and research issues and anti-trafficking strategies in the Nepalese context. We collected published and unpublished data assessing the public health, ethical burden and research needs from different sources. Trafficked female involved in sex-industry that face grave situation as depicted and it might a reservoir of sexually transmitted diseases. Ethical issues related to survey of assessing the burden are difficult to carry out. The best ways to prevent and control these problems are to enhance anti- trafficking laws and raise awareness, empower and mobilize females and establish organizational capacity.

  16. Partnering with patients in translational oncology research: ethical approach.

    Science.gov (United States)

    Mamzer, Marie-France; Duchange, Nathalie; Darquy, Sylviane; Marvanne, Patrice; Rambaud, Claude; Marsico, Giovanna; Cerisey, Catherine; Scotté, Florian; Burgun, Anita; Badoual, Cécile; Laurent-Puig, Pierre; Hervé, Christian

    2017-04-08

    The research program CARPEM (cancer research and personalized medicine) brings together the expertise of researchers and hospital-based oncologists to develop translational research in the context of personalized or "precision" medicine for cancer. There is recognition that patient involvement can help to take into account their needs and priorities in the development of this emerging practice but there is currently no consensus about how this can be achieved. In this study, we developed an empirical ethical research action aiming to improve patient representatives' involvement in the development of the translational research program together with health professionals. The aim is to promote common understanding and sharing of knowledge between all parties and to establish a long-term partnership integrating patient's expectations. Two distinct committees were settled in CARPEM: an "Expert Committee", gathering healthcare and research professionals, and a "Patient Committee", gathering patients and patient representatives. A multidisciplinary team trained in medical ethics research ensured communication between the two committees as well as analysis of discussions, minutes and outputs from all stakeholders. The results highlight the efficiency of the transfer of knowledge between interested parties. Patient representatives and professionals were able to identify new ethical challenges and co-elaborate new procedures to gather information and consent forms for adapting to practices and recommendations developed during the process. Moreover, included patient representatives became full partners and participated in the transfer of knowledge to the public via conferences and publications. Empirical ethical research based on a patient-centered approach could help in establishing a fair model for coordination and support actions during cancer research, striking a balance between the regulatory framework, researcher needs and patient expectations. Our approach addresses

  17. Ethical Medical and Biomedical Practice in Health Research in Africa

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

    Ethical Medical and Biomedical Practice in Health Research in Africa ... of research studies that do not conform with international ethical standards and ... Journal articles ... IDRC congratulates first cohort of Women in Climate Change Science ...

  18. Abnormal immune system development and function in schizophrenia helps reconcile diverse findings and suggests new treatment and prevention strategies.

    Science.gov (United States)

    Anders, Sherry; Kinney, Dennis K

    2015-08-18

    Extensive research implicates disturbed immune function and development in the etiology and pathology of schizophrenia. In addition to reviewing evidence for immunological factors in schizophrenia, this paper discusses how an emerging model of atypical immune function and development helps explain a wide variety of well-established - but puzzling - findings about schizophrenia. A number of theorists have presented hypotheses that early immune system programming, disrupted by pre- and perinatal adversity, often combines with abnormal brain development to produce schizophrenia. The present paper focuses on the hypothesis that disruption of early immune system development produces a latent immune vulnerability that manifests more fully after puberty, when changes in immune function and the thymus leave individuals more susceptible to infections and immune dysfunctions that contribute to schizophrenia. Complementing neurodevelopmental models, this hypothesis integrates findings on many contributing factors to schizophrenia, including prenatal adversity, genes, climate, migration, infections, and stress, among others. It helps explain, for example, why (a) schizophrenia onset is typically delayed until years after prenatal adversity, (b) individual risk factors alone often do not lead to schizophrenia, and (c) schizophrenia prevalence rates actually tend to be higher in economically advantaged countries. Here we discuss how the hypothesis explains 10 key findings, and suggests new, potentially highly cost-effective, strategies for treatment and prevention of schizophrenia. Moreover, while most human research linking immune factors to schizophrenia has been correlational, these strategies provide ethical ways to experimentally test in humans theories about immune function and schizophrenia. This article is part of a Special Issue entitled SI: Neuroimmunology in Health And Disease. Copyright © 2015 Elsevier B.V. All rights reserved.

  19. The ethics of neonatal research: An ethicist's and a parents' perspective.

    Science.gov (United States)

    Janvier, Annie; Farlow, Barbara

    2015-12-01

    The ethics of neonatal research are complex because vulnerable new parents are asked to provide consent on behalf of their fragile baby. Whereas clinical neonatal care has evolved to value personalized and shared decision-making, the goal of research ethics is still to standardize the informed consent process and make it as complete and thorough as possible. Ethicists, lawyers and physicians have shaped the field of research ethics and consent for research. The goal of detailed informed consent is to protect participants from harm, but procedures were developed without input from the principal stakeholders: ex-neonatal intensive care unit parents/patients. Empirical investigations examining patient and parental perspectives on research and research ethics are lacking. Rigorous investigations are needed to determine how parents of sick neonates want their families to be protected, knowing that a lack of research is also harmful. Large randomized controlled multicenter trials will always be needed to improve neonatal outcomes. These trials are costly and time-consuming. Currently, the way in which research is funded and regulated and the way in which academic merit is recognized lead to inefficiency and a waste of precious resources. Following a review of the history of research ethics, this article examines and discusses the ethics of research in neonatology. In addition, challenges and opportunities are identified and ideas for future investigations are proposed. Copyright © 2015 Elsevier Ltd. All rights reserved.

  20. Ethics and Epistemology in Big Data Research.

    Science.gov (United States)

    Lipworth, Wendy; Mason, Paul H; Kerridge, Ian; Ioannidis, John P A

    2017-12-01

    Biomedical innovation and translation are increasingly emphasizing research using "big data." The hope is that big data methods will both speed up research and make its results more applicable to "real-world" patients and health services. While big data research has been embraced by scientists, politicians, industry, and the public, numerous ethical, organizational, and technical/methodological concerns have also been raised. With respect to technical and methodological concerns, there is a view that these will be resolved through sophisticated information technologies, predictive algorithms, and data analysis techniques. While such advances will likely go some way towards resolving technical and methodological issues, we believe that the epistemological issues raised by big data research have important ethical implications and raise questions about the very possibility of big data research achieving its goals.

  1. Guidelines for an environmental code of ethics for research institutions

    International Nuclear Information System (INIS)

    Gardusi, Claudia; Aquino, Afonso Rodrigues de

    2009-01-01

    The purpose of this work is to reflect about actions that may contribute to the creation of mechanisms to protect the environment in the development of research projects at research institutions, specifically the Nuclear and Energy Research Institute - IPEN. A brief review of part of the ethical values applied to the process of scientific development during the old, medieval and modern periods is presented, showing the split of the nature ethical principles. It is also reported an overview of the creation of codes of ethics applied to research institutions. Moreover, criteria are presented to settle guidelines to protect the environment during the development of research projects. (author)

  2. Heterogeneity of Human Research Ethics Committees and Research Governance Offices across Australia: An observational study.

    Science.gov (United States)

    De Smit, Elisabeth; Kearns, Lisa S; Clarke, Linda; Dick, Jonathan; Hill, Catherine L; Hewitt, Alex W

    2016-01-01

    Conducting ethically grounded research is a fundamental facet of all investigations. Nevertheless, the administrative burdens of current ethics review are substantial, and calls have been made for a reduction in research waste. To describe the heterogeneity in administration and documentation required by Human Research Ethics Committees (HRECs) and Research Governance Offices (RGOs) across Australia. In establishing a nationwide study to investigate the molecular aetiology of Giant Cell Arteritis (GCA), for which archived pathological specimens from around Australia are being recruited, we identified variation across separate HREC and RGO requirements. Submission paperwork and correspondence from each collaborating site and its representative office for research were reviewed. This data was interrogated to evaluate differences in current guidelines. Twenty-five pathology departments across seven Australian States collaborated in this study. All states, except Victoria, employed a single ethics review model. There was discrepancy amongst HRECs as to which application process applied to our study: seven requested completion of a "National Ethics Application Form" and three a "Low Negligible Risk" form. Noticeable differences in guidelines included whether electronic submission was sufficient. There was variability in the total number of documents submitted (range five to 22) and panel review turnaround time (range nine to 136 days). We demonstrate the challenges and illustrate the heavy workload involved in receiving widespread ethics and governance approval across Australia. We highlight the need to simplify, homogenise, and nationalise human ethics for non-clinical trial studies. Reducing unnecessary administration will enable investigators to achieve research aims more efficiently.

  3. Heterogeneity of Human Research Ethics Committees and Research Governance Offices across Australia: An observational study

    Directory of Open Access Journals (Sweden)

    Elisabeth De Smit

    2016-02-01

    Full Text Available Background Conducting ethically grounded research is a fundamental facet of all investigations. Nevertheless, the administrative burdens of current ethics review are substantial, and calls have been made for a reduction in research waste. Aims To describe the heterogeneity in administration and documentation required by Human Research Ethics Committees (HRECs and Research Governance Offices (RGOs across Australia. Methods In establishing a nationwide study to investigate the molecular aetiology of Giant Cell Arteritis (GCA, for which archived pathological specimens from around Australia are being recruited, we identified variation across separate HREC and RGO requirements. Submission paperwork and correspondence from each collaborating site and its representative office for research were reviewed. This data was interrogated to evaluate differences in current guidelines. Results Twenty-five pathology departments across seven Australian States collaborated in this study. All states, except Victoria, employed a single ethics review model. There was discrepancy amongst HRECs as to which application process applied to our study: seven requested completion of a “National Ethics Application Form” and three a “Low Negligible Risk” form. Noticeable differences in guidelines included whether electronic submission was sufficient. There was variability in the total number of documents submitted (range five to 22 and panel review turnaround time (range nine to 136 days. Conclusion We demonstrate the challenges and illustrate the heavy workload involved in receiving widespread ethics and governance approval across Australia. We highlight the need to simplify, homogenise, and nationalise human ethics for non-clinical trial studies. Reducing unnecessary administration will enable investigators to achieve research aims more efficiently

  4. Ethical considerations in malaria research proposal review: empirical evidence from 114 proposals submitted to an Ethics Committee in Thailand.

    Science.gov (United States)

    Adams, Pornpimon; Prakobtham, Sukanya; Limphattharacharoen, Chanthima; Vutikes, Pitchapa; Khusmith, Srisin; Pengsaa, Krisana; Wilairatana, Polrat; Kaewkungwal, Jaranit

    2015-09-14

    Malaria research is typically conducted in developing countries in areas of endemic disease. This raises specific ethical issues, including those related to local cultural concepts of health and disease, the educational background of study subjects, and principles of justice at the community and country level. Research Ethics Committees (RECs) are responsible for regulating the ethical conduct of research, but questions have been raised whether RECs facilitate or impede research, and about the quality of REC review itself. This study examines the review process for malaria research proposals submitted to the Ethics Committee of the Faculty of Tropical Medicine at Mahidol University, Thailand. Proposals for all studies submitted for review from January 2010 to December 2014 were included. Individual REC members' reviewing forms were evaluated. Ethical issues (e.g., scientific merit, risk-benefit, sample size, or informed-consent) raised in the forms were counted and analysed according to characteristics, including study classification/design, use of specimens, study site, and study population. All 114 proposals submitted during the study period were analysed, comprising biomedical studies (17 %), drug trials (13 %), laboratory studies (24 %) and epidemiological studies (46 %). They included multi-site (13 %) and international studies (4 %), and those involving minority populations (28 %), children (17 %) and pregnant women (7 %). Drug trials had the highest proportion of questions raised for most ethical issues, while issues concerning privacy and confidentiality tended to be highest for laboratory and epidemiology studies. Clarifications on ethical issues were requested by the ethics committee more for proposals involving new specimen collection. Studies involving stored data and specimens tended to attract more issues around privacy and confidentiality. Proposals involving minority populations were more likely to raise issues than those that did not

  5. Research ethics and integrity for social scientists beyond regulatory compliance

    CERN Document Server

    Israel, Mark

    2014-01-01

    This book explores recent developments and debates around researching ethically and with integrity, and complying with ethical requirements, and has been updated and expanded to now cover issues relating to international, indigenous, interdisciplinary and internet research.  

  6. Retrospective research: What are the ethical and legal requirements?

    Science.gov (United States)

    Junod, V; Elger, B

    2010-07-25

    Retrospective research is conducted on already available data and/or biologic material. Whether such research requires that patients specifically consent to the use of "their" data continues to stir controversy. From a legal and ethical point of view, it depends on several factors. The main criteria to be considered are whether the data or the sample is anonymous, whether the researcher is the one who collected it and whether the patient was told of the possible research use. In Switzerland, several laws delineate the procedure to be followed. The definition of "anonymous" is open to some interpretation. In addition, it is debatable whether consent waivers that are legally admissible for data extend to research involving human biological samples. In a few years, a new Swiss federal law on human research could clarify the regulatory landscape. Meanwhile, hospital-internal guidelines may impose stricter conditions than required by federal or cantonal law. Conversely, Swiss and European ethical texts may suggest greater flexibility and call for a looser interpretation of existing laws. The present article provides an overview of the issues for physicians, scientists, ethics committee members and policy makers involved in retrospective research in Switzerland. It aims at provoking more open discussions of the regulatory problems and possible future legal and ethical solutions.

  7. Ethical and methodological issues in research with Sami experiencing disability.

    Science.gov (United States)

    Melbøe, Line; Hansen, Ketil Lenert; Johnsen, Bjørn-Eirik; Fedreheim, Gunn Elin; Dinesen, Tone; Minde, Gunn-Tove; Rustad, Marit

    2016-01-01

    A study of disability among the indigenous Sami people in Norway presented a number of ethical and methodological challenges rarely addressed in the literature. The main study was designed to examine and understand the everyday life, transitions between life stages and democratic participation of Norwegian Sami people experiencing disability. Hence, the purpose of this article is to increase the understanding of possible ethical and methodological issues in research within this field. The article describes and discusses ethical and methodological issues that arose when conducting our study and identifies some strategies for addressing issues like these. The ethical and methodological issues addressed in the article are based on a qualitative study among indigenous Norwegian Sami people experiencing disability. The data in this study were collected through 31 semi-structured in-depth interviews with altogether 24 Sami people experiencing disability and 13 next of kin of Sami people experiencing disability (8 mothers, 2 fathers, 2 sister and 1 guardian). The researchers identified 4 main areas of ethical and methodological issues. We present these issues chronologically as they emerged in the research process: 1) concept of knowledge when designing the study, 2) gaining access, 3) data collection and 4) analysis and accountability. The knowledge generated from this study has the potential to benefit future health research, specifically of Norwegian Sami people experiencing disability, as well as health research concerning indigenous people in general, providing scientific-based insight into important ethical and methodological issues in research with indigenous people experiencing disability.

  8. 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

  9. Ethical Issues in Engineering Models: An Operations Researcher?s Reflections

    OpenAIRE

    Kleijnen, J.

    2010-01-01

    This article starts with an overview of the author?s personal involvement?as an Operations Research consultant?in several engineering case-studies that may raise ethical questions; e.g., case-studies on nuclear waste, water management, sustainable ecology, military tactics, and animal welfare. All these case studies employ computer simulation models. In general, models are meant to solve practical problems, which may have ethical implications for the various stakeholders; namely, the modelers...

  10. Ethical use of social media to facilitate qualitative research.

    Science.gov (United States)

    Lunnay, Belinda; Borlagdan, Joseph; McNaughton, Darlene; Ward, Paul

    2015-01-01

    Increasingly, qualitative health researchers might consider using social media to facilitate communication with participants. Ambiguity surrounding the potential risks intrinsic to social media could hinder ethical conduct and discourage use of this innovative method. We used some core principles of traditional human research ethics, that is, respect, integrity, and beneficence, to design our photo elicitation research that explored the social influences of drinking alcohol among 34 underage women in metropolitan South Australia. Facebook aided our communication with participants, including correspondence ranging from recruitment to feeding back results and sharing research data. This article outlines the ethical issues we encountered when using Facebook to interact with participants and provides guidance to researchers planning to incorporate social media as a tool in their qualitative studies. In particular, we raise the issues of privacy and confidentiality as contemporary risks associated with research using social media. © The Author(s) 2014.

  11. Ethical Dilemmas in Qualitative Research Methodology: Researcher's Reflections

    Science.gov (United States)

    Ngozwana, Nomazulu

    2018-01-01

    This article examines the ethical dilemmas that are specific to qualitative research methodology. These dilemmas concern the issues of withdrawal from the study, anonymity and confidentiality, which are discussed. Each aspect examines how it was dealt with using the researcher's reflections. The research was positioned within an interpretive…

  12. IDRC's Advisory Committee on Research Ethics | IDRC ...

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

    ACRE observes IDRC's Corporate Principles on Research Ethics. ... various published statements on the management of environmental research. ... equity while remaining sensitive to the cultural norms and practices of the localities where the ...

  13. Global Ethics Applied: Global Ethics, Economic Ethics

    OpenAIRE

    Stückelberger, Christoph

    2016-01-01

    Global Ethics Applied’ in four volumes is a reader of 88 selected articles from the author on 13 domains: Vol. 1 Global Ethics, Economic Ethics; Vol. 2 Environmental Ethics; Vol. 3 Development Ethics, Political Ethics, Dialogue and Peace Ethics, Innovation and Research Ethics, Information and Communication Ethics; Vol. 4 Bioethics and Medical Ethics, Family Ethics and Sexual Ethics, Leadership Ethics, Theological Ethics and Ecclesiology, Methods of Ethics. It concludes with the extended Bibli...

  14. The 'over-researched community': An ethics analysis of stakeholder views at two South African HIV prevention research sites.

    Science.gov (United States)

    Koen, Jennifer; Wassenaar, Douglas; Mamotte, Nicole

    2017-12-01

    Health research in resource-limited, multi-cultural contexts raises complex ethical concerns. The term 'over-researched community' (ORC) has been raised as an ethical concern and potential barrier to community participation in research. However, the term lacks conceptual clarity and is absent from established ethics guidelines and academic literature. In light of the concern being raised in relation to research in low- and middle-income countries (LMICs), a critical and empirical exploration of the meaning of ORC was undertaken. Guided by Emanuel et al.'s (2004) eight principles for ethically sound research in LMICs, this study examines the relevance and meaning of the terms 'over-research' and 'over-researched community' through an analysis of key stakeholder perspectives at two South African research sites. Data were collected between August 2007 and October 2008. 'Over-research' was found to represent a conglomeration of ethical concerns often used as a proxy for standard research ethics concepts. 'Over-research' seemed fundamentally linked to disparate positions and perspectives between different stakeholders in the research interaction, arising from challenges in inter-stakeholder relationships. 'Over-research' might be interpreted to mean exploitation. However, exploitation itself could mean different things. Using the term may lead to obscured understanding of real or perceived ethical concerns, making it difficult to identify and address the underlying concerns. It is recommended that the term be carefully and critically interrogated for clarity when used in research ethics discourse. Because it represents other legitimate concerns, it should not be dismissed without careful exploration. Copyright © 2017 Elsevier Ltd. All rights reserved.

  15. A code of ethics for evidence-based research with ancient human remains.

    Science.gov (United States)

    Kreissl Lonfat, Bettina M; Kaufmann, Ina Maria; Rühli, Frank

    2015-06-01

    As clinical research constantly advances and the concept of evolution becomes a strong and influential part of basic medical research, the absence of a discourse that deals with the use of ancient human remains in evidence-based research is becoming unbearable. While topics such as exhibition and excavation of human remains are established ethical fields of discourse, when faced with instrumentalization of ancient human remains for research (i.e., ancient DNA extractions for disease marker analyses) the answers from traditional ethics or even more practical fields of bio-ethics or more specific biomedical ethics are rare to non-existent. The Centre for Evolutionary Medicine at the University of Zurich solved their needs for discursive action through the writing of a self-given code of ethics which was written in dialogue with the researchers at the Institute and was published online in Sept. 2011: http://evolutionäremedizin.ch/coe/. The philosophico-ethical basis for this a code of conduct and ethics and the methods are published in this article. © 2015 Wiley Periodicals, Inc.

  16. A Selected Review of the Underpinnings of Ethics for Human Performance Technology Professionals--Part One: Key Ethical Theories and Research.

    Science.gov (United States)

    Dean, Peter J.

    1993-01-01

    Provides a review of the key ethical theories and relevant empirical research relating to the practice of human performance technology. Topics addressed include ethics, morals, business ethics, ethics officers, empiricism versus normative ethical theory, consequentialism, utilitarianism, nonconsequentialism, Kohlberg model of cognitive moral…

  17. What research ethics should learn from genomics and society research: lessons from the ELSI Congress of 2011.

    Science.gov (United States)

    Henderson, Gail E; Juengst, Eric T; King, Nancy M P; Kuczynski, Kristine; Michie, Marsha

    2012-01-01

    Research on the ethical, legal, and social implications (ELSI) of human genomics has devoted significant attention to the research ethics issues that arise from genomic science as it moves through the translational process. Given the prominence of these issues in today's debates over the state of research ethics overall, these studies are well positioned to contribute important data, contextual considerations, and policy arguments to the wider research ethics community's deliberations, and ultimately to develop a research ethics that can help guide biomedicine's future. In this essay, we illustrate this thesis through an analytic summary of the research presented at the 2011 ELSI Congress, an international meeting of genomics and society researchers. We identify three pivotal factors currently shaping genomic research, its clinical translation, and its societal implications: (1) the increasingly blurred boundary between research and treatment; (2) uncertainty--that is, the indefinite, indeterminate, and incomplete nature of much genomic information and the challenges that arise from making meaning and use of it; and (3) the role of negotiations between multiple scientific and non-scientific stakeholders in setting the priorities for and direction of biomedical research, as it is increasingly conducted "in the public square." © 2012 American Society of Law, Medicine & Ethics, Inc.

  18. A virtue ethics guide to best practices for community-based participatory research.

    Science.gov (United States)

    Schaffer, Marjorie A

    2009-01-01

    Rule ethics, or principled thinking, is important in the analysis of risks and benefits of research and informed consent, but is not completely adequate for guiding ethical responses to communities as research participants and collaborators. Virtue ethics theory can be used to guide actions in relationships, which are foundational to the implementation of community-based participatory research (CBPR). Virtues are strengths of character that contribute to a life of flourishing or well-being for individuals and communities. This article provides an overview of virtue ethics theory, identifies common ethical problems in CBPR, and discusses how professional virtues can be used to guide ethical research practice. The virtues of compassion, courage, honesty, humility, justice, and practical reasoning are defined and applied to ethical practice in the development, implementation, and dissemination of CBPR. Best practices for CBPR that consider the well-being of communities are identified. The virtues of compassion and humility foster inclusiveness and integration of community perspectives in research collaboration. Courage requires researchers to step out of the research safety-net to listen to community member voices and wisdom and share power in research decisions. Honesty requires researchers to communicate realistic expectations for research outcomes, share all findings with the community, and consider community perspectives in research dissemination. Systematic involvement of the community in all steps of the research process represents the virtue of practical reasoning. From a justice perspective, CBPR aims to restore communities rather than take from them.

  19. The Ethics of Clinical Care and the Ethics of Clinical Research: Yin and Yang.

    Science.gov (United States)

    Kowalski, Charles J; Hutchinson, Raymond J; Mrdjenovich, Adam J

    2017-02-01

    The Belmont Report's distinction between research and the practice of accepted therapy has led various authors to suggest that these purportedly distinct activities should be governed by different ethical principles. We consider some of the ethical consequences of attempts to separate the two and conclude that separation fails along ontological, ethical, and epistemological dimensions. Clinical practice and clinical research, as with yin and yang, can be thought of as complementary forces interacting to form a dynamic system in which the whole exceeds the sum of its parts. Just as effective clinical practice cannot exist without clinical research, meaningful clinical research requires the context of clinical practice. We defend this thesis by triangulation, that is, by outlining how multiple investigators have reached this conclusion on the basis of varied theoretical and applied approaches. More confidence can be placed in a result if different methods/viewpoints have led to that result. © The Author 2017. Published by Oxford University Press, on behalf of the Journal of Medicine and Philosophy Inc. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

  20. Research Ethics 2.0: New Perspectives on Norms, Values, and Integrity in Genomic Research in Times of Even Scarcer Resources.

    Science.gov (United States)

    Brall, Caroline; Maeckelberghe, Els; Porz, Rouven; Makhoul, Jihad; Schröder-Bäck, Peter

    2017-01-01

    Research ethics anew gained importance due to the changing scientific landscape and increasing demands and competition in the academic field. These changes are further exaggerated because of scarce(r) resources in some countries on the one hand and advances in genomics on the other. In this paper, we will highlight the current challenges thereof to scientific integrity. To mark key developments in research ethics, we will distinguish between what we call research ethics 1.0 and research ethics 2.0. Whereas research ethics 1.0 focuses on individual integrity and informed consent, research ethics 2.0 entails social scientific integrity within a broader perspective of a research network. This research network can be regarded as a network of responsibilities in which every stakeholder involved has to jointly meet the ethical challenges posed to research. © 2017 S. Karger AG, Basel.

  1. Resources to Support Ethical Practice in Evaluation: An Interview with the Director of the National Center for Research and Professional Ethics

    Science.gov (United States)

    Goodyear, Leslie

    2012-01-01

    Where do evaluators find resources on ethics and ethical practice? This article highlights a relatively new online resource, a centerpiece project of the National Center for Professional and Research Ethics (NCPRE), which brings together information on best practices in ethics in research, academia, and business in an online portal and center. It…

  2. How to depolarise the ethical debate over human embryonic stem cell research (and other ethical debates too!)

    NARCIS (Netherlands)

    Espinoza, N.; Peterson, M.B.

    2012-01-01

    The contention of this paper is that the current ethical debate over embryonic stem cell research is polarised to an extent that is not warranted by the underlying ethical conflict. It is argued that the ethical debate can be rendered more nuanced, and less polarised, by introducing non-binary

  3. Internet research: an opportunity to revisit classic ethical problems in behavioral research.

    Science.gov (United States)

    Pittenger, David J

    2003-01-01

    The Internet offers many new opportunities for behavioral researchers to conduct quantitative and qualitative research. Although the ethical guidelines of the American Psychological Association generalize, in part, to research conducted through the Internet, several matters related to Internet research require further analysis. This article reviews several fundamental ethical issues related to Internet research, namely the preservation of privacy, the issuance of informed consent, the use of deception and false feedback, and research methods. In essence, the Internet offers unique challenges to behavioral researchers. Among these are the need to better define the distinction between private and public behavior performed through the Internet, ensure mechanisms for obtaining valid informed consent from participants and performing debriefing exercises, and verify the validity of data collected through the Internet.

  4. Rethinking Research Ethics: The Case of Postmarketing Trials

    Science.gov (United States)

    London, Alex John; Carlisle, Benjamin

    2015-01-01

    Phase IV studies are often criticized for poor scientific standards. Yet they provide an important resource for addressing evidence shortfalls in drug safety, comparative effectiveness, and real-world utility. Current research ethics policies, and contemplated revisions to them, do not provide an adequate framework for preventing social harms that result from poor post-marketing research practice. Rather than focus exclusively on the welfare and interests of human volunteers, research policies and ethics should also safeguard the integrity of the research enterprise as a system for producing reliable medical evidence. We close by briefly describing how an integrity framework might be implemented for phase IV studies. PMID:22556237

  5. Ethical considerations in clinical training, care and research in psychopharmacology.

    Science.gov (United States)

    Strous, Rael D

    2011-04-01

    Psychopharmacology is a powerful tool in psychiatry; however, it is one that demands responsibility in order to deal with the ethical complexities that accompany advances in the field. It is important that questions are asked and that ethical mindfulness and sensitivity are developed along with clinical skills. In order to cultivate and deepen ethical awareness and subsequently solve issues in optimal fashion, investment should be made in the development of an ethical decision-making process as well as in education in the ethics of psychopharmacology to trainees in the field at all stages of their educational development. A clear approach to identifying ethical problems, engaging various ethical concepts in considering solutions and then applying these principles in problem resolution is demanded. An openness in identifying and exploring issues has become crucial to the future development and maturation of psychopharmacologists, both research and clinical. Consideration must be given to the social implications of psychopharmacological practice, with the best interests of patients always paramount. From both a research and clinical perspective, psychopharmacology has to be practised with fairness, sensitivity and ethical relevance to all. While ethical issues related to psychopharmacological practice are varied and plentiful, this review focuses on advances in technology and biological sciences, personal integrity, special populations, and education and training.

  6. Straw Godzilla: Engaging the Academy and Research Ethics in Artistic Research Projects

    Science.gov (United States)

    Bolt, Barbara; Vincs, Robert

    2015-01-01

    In Australia, the university ethics approval process is guided by the "National Statement on Ethical Conduct in Human Research." The "National Statement" does not provide a hurdle to be overcome or avoided, nor is it a Godzilla-like monster that must be slain for "truth" to survive. Rather the "National…

  7. Toward ethical norms and institutions for climate engineering research

    International Nuclear Information System (INIS)

    Morrow, David R; Kopp, Robert E; Oppenheimer, Michael

    2009-01-01

    Climate engineering (CE), the intentional modification of the climate in order to reduce the effects of increasing greenhouse gas concentrations, is sometimes touted as a potential response to climate change. Increasing interest in the topic has led to proposals for empirical tests of hypothesized CE techniques, which raise serious ethical concerns. We propose three ethical guidelines for CE researchers, derived from the ethics literature on research with human and animal subjects, applicable in the event that CE research progresses beyond computer modeling. The Principle of Respect requires that the scientific community secure the global public's consent, voiced through their governmental representatives, before beginning any empirical research. The Principle of Beneficence and Justice requires that researchers strive for a favorable risk-benefit ratio and a fair distribution of risks and anticipated benefits, all while protecting the basic rights of affected individuals. Finally, the Minimization Principle requires that researchers minimize the extent and intensity of each experiment by ensuring that no experiments last longer, cover a greater geographical extent, or have a greater impact on the climate, ecosystem, or human welfare than is necessary to test the specific hypotheses in question. Field experiments that might affect humans or ecosystems in significant ways should not proceed until a full discussion of the ethics of CE research occurs and appropriate institutions for regulating such experiments are established.

  8. Toward ethical norms and institutions for climate engineering research

    Science.gov (United States)

    Morrow, David R.; Kopp, Robert E.; Oppenheimer, Michael

    2009-10-01

    Climate engineering (CE), the intentional modification of the climate in order to reduce the effects of increasing greenhouse gas concentrations, is sometimes touted as a potential response to climate change. Increasing interest in the topic has led to proposals for empirical tests of hypothesized CE techniques, which raise serious ethical concerns. We propose three ethical guidelines for CE researchers, derived from the ethics literature on research with human and animal subjects, applicable in the event that CE research progresses beyond computer modeling. The Principle of Respect requires that the scientific community secure the global public's consent, voiced through their governmental representatives, before beginning any empirical research. The Principle of Beneficence and Justice requires that researchers strive for a favorable risk-benefit ratio and a fair distribution of risks and anticipated benefits, all while protecting the basic rights of affected individuals. Finally, the Minimization Principle requires that researchers minimize the extent and intensity of each experiment by ensuring that no experiments last longer, cover a greater geographical extent, or have a greater impact on the climate, ecosystem, or human welfare than is necessary to test the specific hypotheses in question. Field experiments that might affect humans or ecosystems in significant ways should not proceed until a full discussion of the ethics of CE research occurs and appropriate institutions for regulating such experiments are established.

  9. Obstacles to researching the researchers: a case study of the ethical challenges of undertaking methodological research investigating the reporting of randomised controlled trials.

    Science.gov (United States)

    McKenzie, Joanne E; Herbison, G Peter; Roth, Paul; Paul, Charlotte

    2010-03-21

    Recent cohort studies of randomised controlled trials have provided evidence of within-study selective reporting bias; where statistically significant outcomes are more likely to be more completely reported compared to non-significant outcomes. Bias resulting from selective reporting can impact on meta-analyses, influencing the conclusions of systematic reviews, and in turn, evidence based clinical practice guidelines.In 2006 we received funding to investigate if there was evidence of within-study selective reporting in a cohort of RCTs submitted to New Zealand Regional Ethics Committees in 1998/99. This research involved accessing ethics applications, their amendments and annual reports, and comparing these with corresponding publications. We did not plan to obtain informed consent from trialists to view their ethics applications for practical and scientific reasons. In November 2006 we sought ethical approval to undertake the research from our institutional ethics committee. The Committee declined our application on the grounds that we were not obtaining informed consent from the trialists to view their ethics application. This initiated a seventeen month process to obtain ethical approval. This publication outlines what we planned to do, the issues we encountered, discusses the legal and ethical issues, and presents some potential solutions. Methodological research such as this has the potential for public benefit and there is little or no harm for the participants (trialists) in undertaking it. Further, in New Zealand, there is freedom of information legislation, which in this circumstance, unambiguously provided rights of access and use of the information in the ethics applications. The decision of our institutional ethics committee defeated this right and did not recognise the nature of this observational research. Methodological research, such as this, can be used to develop processes to improve quality in research reporting. Recognition of the potential

  10. A proposal for ethical research conduct in Madagascar | Wilmé ...

    African Journals Online (AJOL)

    Ethical conducts are gaining importance in times of increased globalization and research efforts. This paper presents a code of ethical conduct for researchers who plan to publish their studies with the journal Madagascar Conservation & Development. This paper will be subject to continuous adaptations and discussions.

  11. Biological study in schizophrenia

    International Nuclear Information System (INIS)

    Kasai, Kiyoto; Yoshikawa, Akane; Natsubori, Takanobu; Koike, Shinsuke; Nagai, Tatsuya; Araki, Tsuyoshi; Nishimura, Yukika; Iwamoto, Kazuya

    2012-01-01

    Schizophrenia is associated with enormous morbidity, mortality, personal disability, and social cost. Although considerable research on schizophrenia has been performed, the etiology of this disease has not been fully elucidated. In recent years, imaging and genetic technologies have been developed dramatically. Disturbances in glutamate and gamma-aminobutyric acid (GABA)ergic neurotransmission may underlie the pathophysiology of schizophrenia. We attempted an integrative review, of studies pertaining to recent advances of schizophrenia research with a focus on neuroimaging and genetic studies. Additionally, we present the preliminary findings of the clinical research in our outpatient unit, specialized for early intervention, at the University of Tokyo Hospital. (author)

  12. On using ethical principles of community-engaged research in translational science.

    Science.gov (United States)

    Khodyakov, Dmitry; Mikesell, Lisa; Schraiber, Ron; Booth, Marika; Bromley, Elizabeth

    2016-05-01

    The transfer of new discoveries into both clinical practice and the wider community calls for reliance on interdisciplinary translational teams that include researchers with different areas of expertise, representatives of health care systems and community organizations, and patients. Engaging new stakeholders in research, however, calls for a reconsideration or expansion of the meaning of ethics in translational research. We explored expert opinion on the applicability of ethical principles commonly practiced in community-engaged research (CEnR) to translational research. To do so, we conducted 2 online, modified-Delphi panels with 63 expert stakeholders who iteratively rated and discussed 9 ethical principles commonly used in CEnR in terms of their importance and feasibility for use in translational research. The RAND/UCLA appropriateness method was used to analyze the data and determine agreement and disagreement among participating experts. Both panels agreed that ethical translational research should be "grounded in trust." Although the academic panel endorsed "culturally appropriate" and "forthcoming with community about study risks and benefits," the mixed academic-community panel endorsed "scientifically valid" and "ready to involve community in interpretation and dissemination" as important and feasible principles of ethical translational research. These findings suggest that in addition to protecting human subjects, contemporary translational science models need to account for the interests of, and owe ethical obligations to, members of the investigative team and the community at large. Copyright © 2016 Elsevier Inc. All rights reserved.

  13. A Scoping Review of Empirical Research Relating to Quality and Effectiveness of Research Ethics Review.

    Science.gov (United States)

    Nicholls, Stuart G; Hayes, Tavis P; Brehaut, Jamie C; McDonald, Michael; Weijer, Charles; Saginur, Raphael; Fergusson, Dean

    2015-01-01

    To date there is no established consensus of assessment criteria for evaluating research ethics review. We conducted a scoping review of empirical research assessing ethics review processes in order to identify common elements assessed, research foci, and research gaps to aid in the development of assessment criteria. Electronic searches of Ovid Medline, PsychInfo, and the Cochrane DSR, ACP Journal Club, DARE, CCTR, CMR, HTA, and NHSEED, were conducted. After de-duplication, 4234 titles and abstracts were reviewed. Altogether 4036 articles were excluded following screening of titles, abstracts and full text. A total of 198 articles included for final data extraction. Few studies originated from outside North America and Europe. No study reported using an underlying theory or framework of quality/effectiveness to guide study design or analyses. We did not identify any studies that had involved a controlled trial--randomised or otherwise--of ethics review procedures or processes. Studies varied substantially with respect to outcomes assessed, although tended to focus on structure and timeliness of ethics review. Our findings indicate a lack of consensus on appropriate assessment criteria, exemplified by the varied study outcomes identified, but also a fragmented body of research. To date research has been largely quantitative, with little attention given to stakeholder experiences, and is largely cross sectional. A lack of longitudinal research to date precludes analyses of change or assessment of quality improvement in ethics review.

  14. Dreaming and Schizophrenia.

    Science.gov (United States)

    Stickney, Jeffrey L.

    Parallels between dream states and schizophrenia suggest that the study of dreams may offer some information about schizophrenia. A major theoretical assumption of the research on dreaming and schizophrenia is that, in schizophrenics, the dream state intrudes on the awake state creating a dreamlike symptomatology. This theory, called the REM…

  15. [Ethics in clinical research: contextualizing and reductionist problem definitions, forms of ethical reflection and some particular implications].

    Science.gov (United States)

    Roelcke, Volker

    2003-12-01

    The present paper starts off with a short outline of issues, conflicts, and goals of ethical reflection about clinical research. It is then argued that non-reductionist, patient-centred ethics should critically reflect on medically preformed problem definitions, ways of problem solution, and evaluations. The shortcomings of such preformed perceptions and interpretations are illustrated using the examples of dementia research, and the complexities of the notion of risk. A more comprehensive approach including the perceptions, interpretations, and evaluations of the patients' perspective necessitates a form of ethical reflection which takes into account the social and cultural contexts of clinical research, and which therefore relies on concepts and methods of the cultural sciences (in particular history, sociology, and cultural anthropology). The decision for a reductionist, or for a contextualising mode of ethical reflection represents in itself a value decision and needs to be explicitly justified.

  16. Eating Disorders in Schizophrenia: Implications for Research and Management

    Directory of Open Access Journals (Sweden)

    Youssef Kouidrat

    2014-01-01

    Full Text Available Objective. Despite evidence from case series, the comorbidity of eating disorders (EDs with schizophrenia is poorly understood. This review aimed to assess the epidemiological and clinical characteristics of EDs in schizophrenia patients and to examine whether the management of EDs can be improved. Methods. A qualitative review of the published literature was performed using the following terms: “schizophrenia” in association with “eating disorders,” “anorexia nervosa,” “bulimia nervosa,” “binge eating disorder,” or “night eating syndrome.” Results. According to our literature review, there is a high prevalence of comorbidity between schizophrenia and EDs. EDs may occur together with or independent of psychotic symptoms in these patients. Binge eating disorders and night eating syndromes are frequently found in patients with schizophrenia, with a prevalence of approximately 10%. Anorexia nervosa seems to affect between 1 and 4% of schizophrenia patients. Psychopathological and neurobiological mechanisms, including effects of antipsychotic drugs, should be more extensively explored. Conclusions. The comorbidity of EDs in schizophrenia remains relatively unexplored. The clearest message of this review is the importance of screening for and assessment of comorbid EDs in schizophrenia patients. The management of EDs in schizophrenia requires a multidisciplinary approach to attain maximized health outcomes. For clinical practice, we propose some recommendations regarding patient-centered care.

  17. ENRICH Forum: Ethical aNd Regulatory Issues in Cancer ResearcH

    Science.gov (United States)

    ENRICH Forum: Ethical aNd Regulatory Issues in Cancer ResearcH, designed to stimulate dialogue on ethical and regulatory issues in cancer research and promote awareness of developing policies and best practices.

  18. Evaluation in health promotion: thoughts from inside a human research ethics committee.

    Science.gov (United States)

    Allen, Judy; Flack, Felicity

    2015-12-01

    Health promotion research, quality improvement and evaluation are all activities that raise ethical issues. In this paper, the Chair and a member of human resear ch ethics committees provide an insiders' point of view on how to demonstrate ethical conduct in health promotion research and quality improvement. Several common issues raised by health promotion research and evaluation are discussed including researcher integrity, conflicts of interest, use of information, consent and privacy.

  19. Microbicide research in developing countries: have we given the ethical concerns due consideration?

    Science.gov (United States)

    Moodley, Keymanthri

    2007-09-19

    HIV prevention research has been fraught with ethical concerns since its inception. These concerns were highlighted during HIV vaccine research and have been elaborated in microbicide research. A host of unique ethical concerns pervade the microbicide research process from trial design to post-trial microbicide availability. Given the urgency of research and development in the face of the devastating HIV pandemic, these ethical concerns represent an enormous challenge for investigators, sponsors and Research Ethics Committees (RECs) both locally and internationally. Ethical concerns relating to safety in microbicide research are a major international concern. However, in the urgency to develop a medically efficacious microbicide, some of these concerns may not have been anticipated. In the risk-benefit assessment of research protocols, both medical and psycho-social risk must be considered. In this paper four main areas that have a potential for medical and/or psycho-social harm are examined. Male partner involvement is controversial in the setting of covert use of microbicides. However, given the long-term exposure of men to experimental products, this may be methodologically, ethically and legally important. Covert use of microbicides may impact negatively on relationship dynamics leading to psychosocial harm to varying extents. The unexpectedly high rates of pregnancy during clinical trials raise important methodological and ethical concerns. Enrollment of adolescents without parental consent generates ethical and legal concerns that must be carefully considered by RECs and trial sites. Finally, paradoxical outcomes in recent trials internationally have advanced the debate on the nature of informed consent and responsibility of researchers to participants who become HIV positive during or after trials. Phase 3 microbicide trials are an undisputed research and ethical priority in developing countries. However, such trials must be conducted with attention to both

  20. Community Partnered Research Ethics Training in Practice: A Collaborative Approach to Certification.

    Science.gov (United States)

    Yonas, Michael A; Jaime, Maria Catrina; Barone, Jean; Valenti, Shannon; Documét, Patricia; Ryan, Christopher M; Miller, Elizabeth

    2016-04-01

    This report describes the development and implementation of a tailored research ethics training for academic investigators and community research partners (CRP). The Community Partnered Research Ethics Training (CPRET) and Certification is a free and publicly available model and resource created by a university and community partnership to ensure that traditional and non-traditional research partners may study, define, and apply principles of human subjects' research. To date, seven academic and 34 CRP teams have used this highly interactive, engaging, educational, and relationship building process to learn human subjects' research and be certified by the University of Pittsburgh Institutional Review Board (IRB). This accessible, flexible, and engaging research ethics training process serves as a vehicle to strengthen community and academic partnerships to conduct ethical and culturally sensitive research. © The Author(s) 2016.

  1. The Danish Schizophrenia Registry

    DEFF Research Database (Denmark)

    Baandrup, Lone; Cerqueira, Charlotte; Haller, Lea

    2016-01-01

    Aim of database: To systematically monitor and improve the quality of treatment and care of patients with schizophrenia in Denmark. In addition, the database is accessible as a resource for research. Study population: Patients diagnosed with schizophrenia and receiving mental health care...... to the data for use in specific research projects by applying to the steering committee. Conclusion: The Danish Schizophrenia Registry represents a valuable source of informative data to monitor and improve the quality of care of patients with schizophrenia in Denmark. However, continuous resources and time...

  2. An Environmental Ethical Conceptual Framework for Research on Sustainability and Environmental Education

    Science.gov (United States)

    Kronlid, David O.; Ohman, Johan

    2013-01-01

    This article suggests that environmental ethics can have great relevance for environmental ethical content analyses in environmental education and education for sustainable development research. It is based on a critique that existing educational research does not reflect the variety of environmental ethical theories. Accordingly, we suggest an…

  3. Why should ethics approval be required prior to publication of health promotion research?

    Science.gov (United States)

    Newson, Ainsley J; Lipworth, Wendy

    2015-12-01

    Most academic journals that publish studies involving human participants require evidence that the research has been approved by a human research ethics committee (HREC). Yet journals continue to receive submissions from authors who have failed to obtain such approval. In this paper, we provide an ethical justification of why journals should not, in general, publish articles describing research that has no ethics approval, with particular attention to the health promotion context. Using theoretical bioethical reasoning and drawing on a case study, we first rebut some potential criticisms of the need for research ethics approval. We then outline four positive claims to justify a presumption that research should, in most instances, be published only if it has been undertaken with HREC approval. We present four justifications for requiring ethics approval before publication: (1) HREC approval adds legitimacy to the research; (2) the process of obtaining HREC approval can improve the quality of an intervention being investigated; (3) obtaining HREC approval can help mitigate harm; and (4) obtaining HREC approval demonstrates respect for persons. This paper provides a systematic and comprehensive assessment of why research ethics approval should generally be obtained before publishing in the health promotion context. So what? Journals such as the Health Promotion Journal of Australia have recently begun to require research ethics approval for publishing research. Health promotion researchers will be interested in learning the ethical justification for this change.

  4. A Brief History of Biomedical Research Ethics in Iran: Conflict of Paradigms.

    Science.gov (United States)

    Aramesh, Kiarash

    2015-08-01

    During the past two decades, Iran has experienced a noteworthy growth in its biomedical research sector. At the same time, ethical concerns and debates resulting from this burgeoning enterprise has led to increasing attention paid to biomedical ethics. In Iran, Biomedical research ethics and research oversight passed through major periods during the past decades, separated by a paradigm shift. Period 1, starting from the early 1970s, is characterized by research paternalism and complete reliance on researchers as virtuous and caring physicians. This approach was in concordance with the paternalistic clinical practice of physicians outside of research settings during the same period. Period 2, starting from the late 1990s, was partly due to revealing of ethical flaws that occurred in biomedical research in Iran. The regulatory and funding bodies concluded that it was not sufficient to rely solely on the personal and professional virtues of researchers to safeguard human subjects' rights and welfare. The necessity for independent oversight, emphasized by international declarations, became obvious and undeniable. This paradigm shift led to the establishment of research ethics committees throughout the country, the establishment of academic research centers focusing on medical ethics (MEHR) and the compilation of the first set of national ethical guidelines on biomedical research-one of the first and most important projects conducted by and in the MEHR. Although not yet arrived, 'period 3' is on its way. It is predictable from the obvious trends toward performance of high-quality clinical research and the appearance of a highly educated new generation, especially among women. Published 2014. This article is a U.S. Government work and is in the public domain in the USA.

  5. La investigación éticamente reflexionada / Ethically pondered research

    Directory of Open Access Journals (Sweden)

    Samuel Arias-Valencia

    2015-10-01

    Full Text Available Resumen Hoy día, el ejercicio de la ética de la investigación se soporta en la teoría principialista de Beauchamp & Childres. Ellos propusieron el análisis de la reflexión ética a partir de cuatro principios Prima facie: autonomía, no maleficencia, beneficencia y justicia. Su instrumentalización ha facilitado la discusión y la argumentación ética en las ciencias biomédicas y la investigación en salud. Sin embargo, la valoración y el seguimiento ético de la investigación se ha burocratizado. Tanto para el investigador como para los comités de ética el ejercicio consiste en un trámite donde se debe verificar el cumplimiento de requisitos establecidos por unas listas de chequeo, que es a lo que han quedado reducidos en la práctica los códigos de ética de la investigación basados en la propuesta principialista; donde se excluye generalmente la discusión de la justicia social como prioridad de la investigación en salud. Por tal razón, los autores consideran necesario proponer otros marcos para el abordaje de la ética de la investigación que no se restrinjan a la aplicación de normas sino que inviten a una reflexión ética en los procesos de investigación en salud. Consideran que asumir la ética como reflexión sobre la justicia genera un marco más amplio para comprender la ética de investigación. Se supera así, una perspectiva limitada a reglas y normas externas para reconocerla como un asunto vital que compromete al investigador en su calidad de sujeto moral./ Abstract Today, the practice of research ethics is grounded on the four principles theory of Beauchamp & Childress. They proposed that ethical research be conducted on the basis of four prima facie principles: autonomy, non-maleficence, beneficence and justice The instrumentalization of this theory has made ethics discussion and argumentation easier for the biomedical sciences and health research. However, the ethical assessment and monitoring of research

  6. Introduction: the Fogarty International Research Ethics Education and Curriculum Development Program in historical context.

    Science.gov (United States)

    Millum, Joseph; Grady, Christine; Keusch, Gerald; Sina, Barbara

    2013-12-01

    In response to the increasing need for research ethics expertise in low and middle income countries (LMICs), the NIH's Fogarty International Research Ethics Education and Curriculum Development Program has provided grants for the development of training programs in international research ethics for LMIC professionals since 2000. This collection of papers draws upon the combined expertise of Fogarty grantees, trainees, and other experts to assess the state of research ethics in LMICs, and the lessons learned over 12 years of international research ethics education; to assess future needs; and to chart a way forward to meet those needs. In this introductory paper we briefly sketch the evolution of research ethics as applied to LMIC research, the underpinning and evolution of the Fogarty bioethics program, and summarize key conclusions from the other papers in the collection.

  7. Teaching ethics to engineers - a research-based perspective

    Science.gov (United States)

    Bowden, Peter

    2010-10-01

    This paper describes research underpinning a course, developed in Australia, on ethics for engineers. The methodology used, that of identifying the principal ethical issues facing the discipline and designing the course around these issues, would be applicable to other disciplines and in other countries. The course was based on the assumption that identifying the major ethical issues in the discipline, and subsequently presenting and analysing them in the classroom, would provide the future professional with knowledge of the ethical problems that they were likely to face on graduation. The student has then to be given the skills and knowledge to combat these concerns, should he/she wish to. These findings feed into several components of the course, such as the development of a code of ethics, the role of a professional society or industry association and the role of ethical theory The sources employed to identify the issues were surveys of the literature and about 30 case studies, in Australia and overseas. The issues thus identified were then put before a sample of engineering managers to assess the relevance to the profession.

  8. A Scoping Review of Empirical Research Relating to Quality and Effectiveness of Research Ethics Review.

    Directory of Open Access Journals (Sweden)

    Stuart G Nicholls

    Full Text Available To date there is no established consensus of assessment criteria for evaluating research ethics review.We conducted a scoping review of empirical research assessing ethics review processes in order to identify common elements assessed, research foci, and research gaps to aid in the development of assessment criteria. Electronic searches of Ovid Medline, PsychInfo, and the Cochrane DSR, ACP Journal Club, DARE, CCTR, CMR, HTA, and NHSEED, were conducted. After de-duplication, 4234 titles and abstracts were reviewed. Altogether 4036 articles were excluded following screening of titles, abstracts and full text. A total of 198 articles included for final data extraction.Few studies originated from outside North America and Europe. No study reported using an underlying theory or framework of quality/effectiveness to guide study design or analyses. We did not identify any studies that had involved a controlled trial--randomised or otherwise--of ethics review procedures or processes. Studies varied substantially with respect to outcomes assessed, although tended to focus on structure and timeliness of ethics review.Our findings indicate a lack of consensus on appropriate assessment criteria, exemplified by the varied study outcomes identified, but also a fragmented body of research. To date research has been largely quantitative, with little attention given to stakeholder experiences, and is largely cross sectional. A lack of longitudinal research to date precludes analyses of change or assessment of quality improvement in ethics review.

  9. A Scoping Review of Empirical Research Relating to Quality and Effectiveness of Research Ethics Review

    Science.gov (United States)

    Nicholls, Stuart G.; Hayes, Tavis P.; Brehaut, Jamie C.; McDonald, Michael; Weijer, Charles; Saginur, Raphael; Fergusson, Dean

    2015-01-01

    Background To date there is no established consensus of assessment criteria for evaluating research ethics review. Methods We conducted a scoping review of empirical research assessing ethics review processes in order to identify common elements assessed, research foci, and research gaps to aid in the development of assessment criteria. Electronic searches of Ovid Medline, PsychInfo, and the Cochrane DSR, ACP Journal Club, DARE, CCTR, CMR, HTA, and NHSEED, were conducted. After de-duplication, 4234 titles and abstracts were reviewed. Altogether 4036 articles were excluded following screening of titles, abstracts and full text. A total of 198 articles included for final data extraction. Results Few studies originated from outside North America and Europe. No study reported using an underlying theory or framework of quality/effectiveness to guide study design or analyses. We did not identify any studies that had involved a controlled trial - randomised or otherwise – of ethics review procedures or processes. Studies varied substantially with respect to outcomes assessed, although tended to focus on structure and timeliness of ethics review. Discussion Our findings indicate a lack of consensus on appropriate assessment criteria, exemplified by the varied study outcomes identified, but also a fragmented body of research. To date research has been largely quantitative, with little attention given to stakeholder experiences, and is largely cross sectional. A lack of longitudinal research to date precludes analyses of change or assessment of quality improvement in ethics review. PMID:26225553

  10. Ethics and Community-Based Participatory Research: Perspectives From the Field

    OpenAIRE

    Bastida, Elena M.; Tseng, Tung-Sung; McKeever, Corliss; Jack, Leonard

    2010-01-01

    Exploring the importance of ethical issues in the conduct of community-based participatory research (CBPR) continues to be an important topic for researchers and practitioners. This article uses the Beyond Sabor Project, a CBPR project implemented in the Lower Rio Grande Valley, as a case example to discuss ethical issues such as the importance of increasing community involvement in research, ensuring that communities benefit from the research, sharing leadership roles, and sensitive issues r...

  11. Research Ethics Committees and Participatory Action Research With Young People: The Politics of Voice.

    Science.gov (United States)

    Yanar, Zeynep M; Fazli, Mehria; Rahman, Jahanara; Farthing, Rys

    2016-04-01

    Participatory action research (PAR) is a methodological approach that seeks to maximize the participation of people whose lives it researches. It is underpinned by an ethical concern to research "with" people, rather than "on" people. However, this ethical approach to research is often, paradoxically, problematized by universities' research ethics committees (RECs). This article explores one site of tension between PAR and RECs-the requirement for anonymity for below 18-year-olds. It explores this tension by exploring a case study of a peer-to-peer research project undertaken by young women in East London, and using our own experiences and perspectives, it argues that anonymity can be unjust, disempowering, and unnecessary, and can reduce "pride." Without wanting to develop specific recommendations, given the limited scope of our case study, this article uses firsthand experiences to add weight to the broader discussions calling for a critical rethink of REC guidelines. © The Author(s) 2016.

  12. Ethical Overview of Placebo Control in Psychiatric Research - Concepts and Challenges.

    Science.gov (United States)

    Ćurković, Marko; Živković, Maja; Radić, Krešimir; Vilibić, Maja; Ćelić, Ivan; Bagarić, Dario

    2015-06-01

    Permissibility of placebo controls in psychiatric research is raising everlasting controversies. The main ethical issue remains: whether, when, under what conditions, and to what extent is it justifiable to disregard subject's present (best) interest for the presumably "greater" ones. In relation to this main ethical concern, two distinct arguments arose: proponents of placebo controls trials (placebo ortxodoxy) and proponents of active controls trials (active-control orthodoxy). More recently, in new ethical guidelines, Declaration of Helsinki and International Ethical Guidelines for Biomedical Research Involving Human Subjects, a "middle way" approach was formulated, acceptable to both sides of the argument, saying placebo controls can be justified under certain conditions: when and only when, they firstly present undisputed methodological reasoning, and secondly, fulfill certain ethical considerations - mainly regarding the permissibility of accompanied risks. These ethical evaluations are inevitably contextual and evoke the need for the principle of proportionality. In scope of recent findings of substantial and progressively increasing placebo response in psychiatric research, contextual factors are identified and both theoretical and practical challenges are discussed.

  13. Review of national research ethics regulations and guidelines in Middle Eastern Arab countries

    Science.gov (United States)

    2012-01-01

    Background Research ethics guidelines are essential for conducting medical research. Recently, numerous attempts have been made to establish national clinical research documents in the countries of the Middle East. This article analyzes these documents. Methods Thirteen Arab countries in the Middle East were explored for available national codes, regulations, and guidelines concerning research ethics, and 10 documents from eight countries were found. We studied these documents, considering the ethical principles stated in the Declaration of Helsinki, the Council for International Organizations of Medical Sciences (CIOMS) guidelines, and the International Conference of Harmonization - Guidelines for Good Clinical Practice (ICH-GCP). Our paper comprises a complete list of protections, such as confidentiality, informed consent, ethics committees, and others. Results This study found different levels and kinds of research ethics regulations and guidelines in the countries examined. Two groups can be distinguished: the countries in the first group have one or more research ethics regulations or guidelines, while the countries in the second group have not yet established any. Most of the documents showed various degrees of deficiencies in regard to ethical protection. The majority of the documents that were examined refer to one or more international documents on biomedical research ethics. Conclusions Recently, a lot of efforts have been made in many countries in the Middle East. However, compared with international documents, most of the research ethics documents in use in this region demonstrate numerous deficiencies. As it relates to these documents, extensive differences could be observed in regard to development, structure, content, and reference to international guidelines. PMID:23234422

  14. Out of the frying pan? Streamlining the ethics review process of multisite qualitative research projects.

    Science.gov (United States)

    Iedema, Rick A M; Allen, Suellen; Britton, Kate; Hor, Suyin

    2013-05-01

    This paper describes the ethics approval processes for two multicentre, nationwide, qualitative health service research projects. The paper explains that the advent of the National Ethics Application Form has brought many improvements, but that attendant processes put in place at local health network and Human Research Ethics Committee levels may have become significantly more complicated, particularly for innovative qualitative research projects. The paper raises several questions based on its analysis of ethics application processes currently in place. WHAT IS KNOWN ABOUT THE TOPIC? The complexity of multicentre research ethics applications for research in health services has been addressed by the introduction of the National Ethics Application Form. Uptake of the form across the country's human research ethics committees has been uneven. WHAT DOES THIS PAPER ADD? This paper adds detailed insight into the ethics application process as it is currently enacted across the country. The paper details this process with reference to difficulties faced by multisite and qualitative studies in negotiating access to research sites, ethics committees' relative unfamiliarity with qualitative research , and apparent tensions between harmonisation and local sites' autonomy in approving research. WHAT ARE THE IMPLICATIONS FOR PRACTITIONERS? Practitioners aiming to engage in research need to be aware that ethics approval takes place in an uneven procedural landscape, made up of variable levels of ethics approval harmonization and intricate governance or site-specific assessment processes.

  15. Ethical review of research on human subjects at Unilever: reflections on governance.

    Science.gov (United States)

    Sheehan, Mark; Marti, Vernon; Roberts, Tony

    2014-07-01

    This article considers the process of ethical review of research on human subjects at a very large multinational consumer products company. The commercial context of this research throws up unique challenges and opportunities that make the ethics of the process of oversight distinct from mainstream medical research. Reflection on the justification of governance processes sheds important, contrasting light on the ethics of governance of other forms and context of research. © 2013 John Wiley & Sons Ltd.

  16. Ethical and regulatory aspects of embryonic stem cell research.

    Science.gov (United States)

    Jain, Kewal K

    2002-12-01

    Ethical and regulatory issues concerning embryonic stem (ES) cell research are reviewed here a year after the controversy became a public and political issue in the US. The background of various issues are examined and the current regulations in various countries are reviewed. In the US, the debate is linked with abortion, as well as the status of a fetus as a human being, and is politically driven. Obtaining stem cells from embryonic tissues involves destruction of the embryo, to which objections are raised. Religious beliefs are examined and no serious impediments to ES cell research could be identified. Regulations vary from one country to another and it is unlikely that there will ever be any universally uniform ethical and regulatory standards for ES cell research. Currently, the most liberal and favourable environments for ES cell research are in the UK, Singapore, Sweden, India, Israel and China. Unless the US liberalises ES cell research, it may lose its lead in ES cell research and investments in this area may drift to countries with better environments for research. Suggestions are offered in this review to improve the ethical environment for ES cell research.

  17. The Ethics of Doing Ethics.

    Science.gov (United States)

    Hansson, Sven Ove

    2017-02-01

    Ethicists have investigated ethical problems in other disciplines, but there has not been much discussion of the ethics of their own activities. Research in ethics has many ethical problems in common with other areas of research, and it also has problems of its own. The researcher's integrity is more precarious than in most other disciplines, and therefore even stronger procedural checks are needed to protect it. The promotion of some standpoints in ethical issues may be socially harmful, and even our decisions as to which issues we label as "ethical" may have unintended and potentially harmful social consequences. It can be argued that ethicists have an obligation to make positive contributions to society, but the practical implications of such an obligation are not easily identified. This article provides an overview of ethical issues that arise in research into ethics and in the application of such research. It ends with a list of ten practical proposals for how these issues should be dealt with.

  18. A Study on an Effective Education Strategy for Enhancing the Researcher's Ethics

    Energy Technology Data Exchange (ETDEWEB)

    Min, Byung-Joo; Hwang, In-A; Choi, Sun-Yeong; Kwon, Hyuk; Lee, Dae Sung; Yoo, Jae-Bok

    2007-12-15

    Pressure on the researcher has been increased by R and D competition and outcome-oriented evaluation system in the circumstance of increased R and D investment of government and high speed of technological development. Education for research ethics and conscience is more needed for the purpose of researcher's healthy and sound research attitude in this high pressured research environment. This textbook and educational module for research ethics are produced in order to satisfy the need. The text book, 'practical research ethics', is consisted of three chapters. Chapter one, Consciousness of the Research Ethics, deals with the background, definition, and importance of the ethics. Second chapter, Communion, discusses responsible research attitudes, and verification process under research ethical guideline. Chapter 3, Practice of Research Ethics, demonstrates practical guideline. Code and Rules of Ministry of Science and Technology related with the issues and foreign cases are compiled in appendix. Educational module for the textbook includes diverse materials, examples, and video. Educational technique for the module adopts participants' discussion, case analysis, and brain-storming. Applying the textbook and education module into each R and D Institute and academy is expected with suitable modification of each situation. The process will bring up internal discussion and consensus on the research ethics. Case analysis and composing network for practical adopting process will be the next step of this study.

  19. Facebook’s Emotional Contagion Experiment as a Challenge to Research Ethics

    Directory of Open Access Journals (Sweden)

    Jukka Jouhki

    2016-10-01

    Full Text Available This article analyzes the ethical discussion focusing on the Facebook emotional contagion experiment published by the Proceedings of the National Academy of Sciences in 2014. The massive-scale experiment manipulated the News Feeds of a large amount of Facebook users and was successful in proving that emotional contagion happens also in online environments. However, the experiment caused ethical concerns within and outside academia mainly for two intertwined reasons, the first revolving around the idea of research as manipulation, and the second focusing on the problematic definition of informed consent. The article concurs with recent research that the era of social media and big data research are posing a significant challenge to research ethics, the practice and views of which are grounded in the pre social media era, and reflect the classical ethical stances of utilitarianism and deontology.

  20. Ethical research on the implementation of DRGs in Switzerland--a challenging project.

    Science.gov (United States)

    Wild, Verina; Pfister, Eliane; Biller-Andorno, Nikola

    2012-08-09

    Diagnosis Related Groups (DRGs) are currently being introduced on a national scale as a prospective reimbursement scheme in Swiss in-patient hospital care, replacing any remaining retrospective day-rate arrangements. DRGs are expected to promote transparency and efficiency while helping to contain health care costs. The governmental decision to introduce DRGs has caused considerable controversy among different stakeholders, due to diverging appraisals of what will happen when DRGs are introduced as an economic management tool in Switzerland. The controversial discourse on DRGs is particularly interesting from an ethical point of view, since all arguments inevitably contain ethical considerations. In this paper we summarise the results of our exploratory ethical studies that have led to a larger research project funded by the Swiss National Science Foundation: "Impact of Diagnosis-Related Groups (DRGs) on patient care and professional practice" (IDoC). In section 1: 'Developing an understanding of the ethical issues at stake' we briefly explain how DRGs work, what the intended effects are, what the public is concerned about and what the scientific research tells us so far. In section 2: 'Developing an ethical framework for research on DRGs in Switzerland' we summarise the ethical issues and explain the ethical framework we will use in order to perform research on the complex issue of DRGs in Switzerland. Only once a profound understanding of the challenges exists can research on the ethical implications of DRGs be successful.

  1. Exploring Ethical Issues Associated with Using Online Surveys in Educational Research

    Science.gov (United States)

    Roberts, Lynne D.; Allen, Peter J.

    2015-01-01

    Online surveys are increasingly used in educational research, yet little attention has focused on ethical issues associated with their use in educational settings. Here, we draw on the broader literature to discuss 5 key ethical issues in the context of educational survey research: dual teacher/researcher roles; informed consent; use of…

  2. Scientists' Ethical Obligations and Social Responsibility for Nanotechnology Research.

    Science.gov (United States)

    Corley, Elizabeth A; Kim, Youngjae; Scheufele, Dietram A

    2016-02-01

    Scientists' sense of social responsibility is particularly relevant for emerging technologies. Since a regulatory vacuum can sometimes occur in the early stages of these technologies, individual scientists' social responsibility might be one of the most significant checks on the risks and negative consequences of this scientific research. In this article, we analyze data from a 2011 mail survey of leading U.S. nanoscientists to explore their perceptions the regarding social and ethical responsibilities for their nanotechnology research. Our analyses show that leading U.S. nanoscientists express a moderate level of social responsibility about their research. Yet, they have a strong sense of ethical obligation to protect laboratory workers (in both universities and industry) from unhealthy exposure to nanomaterials. We also find that there are significant differences in scientists' sense of social and ethical responsibility depending on their demographic characteristics, job affiliation, attention to media content, risk perceptions and benefit perceptions. We conclude with some implications for future research.

  3. The establishment of research ethics consultation services (RECS): an emerging research resource.

    Science.gov (United States)

    McCormick, Jennifer B; Sharp, Richard R; Ottenberg, Abigale L; Reider, Carson R; Taylor, Holly A; Wilfond, Benjamin S

    2013-02-01

    Emphasis on translational research to facilitate progression from the laboratory into the community also creates a dynamic in which ethics and social policy questions and solutions are ever pressing. In response, academic institutions are creating Research Ethics Consultation Services (RECS). All Clinical Translational Science Award institutions were surveyed in early 2010 to determine which institutions have a RECS in operation and what is their composition and function. Of the 46 institutions surveyed, 33 (70%) have a RECS. Only 15 RECS have received any consult requests in the last year. Issues that are common among these relatively nascent services include relationships with institutional oversight committees, balancing requestor concerns about confidentiality with research integrity and human subjects protection priorities, tracking consult data and outcomes, and developing systems for internal evaluation. There is variability in how these issues are approached. It will be important to be attentive to the institutional context to develop an appropriate approach. Further data about the issues raised by requestors and the recommendations provided are necessary to build a community of scholars who can navigate and resolve ethical issues encountered along the translational research pathway. © 2012 Wiley Periodicals, Inc.

  4. An ethical exploration of barriers to research on controlled drugs

    Science.gov (United States)

    ANDREAE, Michael H; RHODES, Evelyn; BOURGOISE, Tylor; CARTER, George; WHITE, Robert S.; INDYK, Debbie; SACKS, Henry; RHODES, Rosamond

    2016-01-01

    We examine the ethical, social and regulatory barriers that may hamper research on therapeutic potential of certain controversial controlled substances like marijuana, heroin or ketamine. Hazards for individuals and society, and their potential adverse effects on communities may be good reasons for limiting access and justify careful monitoring of certain substances. Overly strict regulations, fear of legal consequences, stigma associated with abuse and populations using illicit drugs, and lack of funding may hinder research on their considerable therapeutic potential. We review the surprisingly sparse literature and address the particular ethical concerns of undue inducement, informed consent, risk to participants, researchers and institutions, justice and liberty germane to the research with illicit and addictive substances. We debate the disparate research stakeholder perspectives and why they are likely to be infected with bias. We propose an empirical research agenda to provide a more evidentiary basis for ethical reasoning. PMID:26982922

  5. Promoting an ethic of engagement in pediatric palliative care research.

    Science.gov (United States)

    Rahimzadeh, Vasiliki; Bartlett, Gillian; Longo, Cristina; Crimi, Laura; Macdonald, Mary Ellen; Jabado, Nada; Ells, Carolyn

    2015-10-16

    This paper defends the ethical and empirical significance of direct engagement with terminally ill children and adolescents in PPC research on health-related quality of life. Clinical trials and other forms of health research have resulted in tremendous progress for improving clinical outcomes among children and adolescents diagnosed with a life-threatening illness. Less attention has been paid, however, to engaging this patient population directly in studies aimed at optimizing health-related quality of life in PPC. Though not restricted to care at the end of life, PPC--and by extension PPC research--is in part dependent on recognizing the social complexities of death and dying and where health-related quality of life is a fundamental element. To explore these complexities in depth requires partnership with terminally ill children and adolescents, and acknowledgement of their active social and moral agency in research. Principles of pediatric research ethics, theoretical tenets of the "new sociology of the child(hood)," and human rights codified in the United Nations Convention on the Rights of the Child (UNCRC) underpin the position that a more engagement-centered approach is needed in PPC research. The ethics, sociologies and human rights of engagement will each be discussed as they relate to research with terminally ill children and adolescents in PPC. Qualitative method(ologies) presented in this paper, such as deliberative stakeholder consultations and phenomenology of practice can serve as meaningful vehicles for achieving i) participation among terminally ill children and adolescents; ii) evidence-bases for PPC best practices; and iii) fulfillment of research ethics principles. PPC research based on direct engagement with PPC patients better reflects their unique expertise and social epistemologies of terminal illness. Such an approach to research would strengthen both the ethical and methodological soundness of HRQoL inquiry in PPC.

  6. Ethical considerations in stem cell research on neurologic and orthopedic conditions.

    Science.gov (United States)

    Banja, John Dennis

    2015-04-01

    The range and gravity of ethical considerations in stem cell research are remarkable and, quite possibly, unprecedented. From the point of securing stem cells for implantation, through the translational and first-in-humans process, and then proceeding through clinical trials culminating in product or service line launch, the entire research trajectory is replete with risk, uncertainty, and problems overweighing foreseeable harms against hoped-for benefits. This article offers an overview of some of the most salient ethical challenges of stem cell research, including ones involving moral status, the intersection of research risks and informed consent processes, methodologic considerations in early phase 1 trials, the temptation to exaggerate the benefits of research discoveries, managing conflicts of interest, and the ethical obligation to conduct various monitoring practices throughout a trial, which could last years. The article will conclude with a glimpse into the future of these technologies wherein the need for ethical scrutiny will likely not diminish. Copyright © 2015. Published by Elsevier Inc.

  7. Risk and Representation in Research Ethics: The NunatuKavut Experience.

    Science.gov (United States)

    Brunger, Fern; Russell, Todd

    2015-10-01

    This article examines Canadian policy governing the ethics of research involving Indigenous communities. Academics and community members collaborated in research to examine how best to apply the Tri-Council Policy Statement guidelines in a community with complex and multiple political and cultural jurisdictions. We examined issues of NunatuKavut (Southern Inuit) authority and representation in relation to governance of research in a context where community identity is complex and shifting, and new provincial legislation mandates centralized ethics review. We describe the politics of risk--the ways in which collective identity and research risks are co-constructed. Our case study illustrates that collective consent to research must emphasize shifting identity construction in relation to the particular risks and benefits invoked by the research question, to ascertain with which groups or individuals the negotiation of risk should take place in the first place. We conclude by describing a necessary re-imagining of policy governing research ethics involving Indigenous communities. © The Author(s) 2015.

  8. Stem cell research ethics: consensus statement on emerging issues.

    Science.gov (United States)

    Caulfield, Timothy; Ogbogu, Ubaka; Nelson, Erin; Einsiedel, Edna; Knoppers, Bartha; McDonald, Michael; Brunger, Fern; Downey, Robin; Fernando, Kanchana; Galipeau, Jacques; Geransar, Rose; Griener, Glenn; Grenier, Glenn; Hyun, Insoo; Isasi, Rosario; Kardel, Melanie; Knowles, Lori; Kucic, Terrence; Lotjonen, Salla; Lyall, Drew; Magnus, David; Mathews, Debra J H; Nisbet, Matthew; Nisker, Jeffrey; Pare, Guillaume; Pattinson, Shaun; Pullman, Daryl; Rudnicki, Michael; Williams-Jones, Bryn; Zimmerman, Susan

    2007-10-01

    This article is a consensus statement by an international interdisciplinary group of academic experts and Canadian policy-makers on emerging ethical, legal and social issues in human embryonic stem cells (hESC) research in Canada. The process of researching consensus included consultations with key stakeholders in hESC research (regulations, stem cell researchers, and research ethics experts), preparation and distribution of background papers, and an international workshop held in Montreal in February 2007 to discuss the papers and debate recommendations. The recommendations provided in the consensus statement focus on issues of immediate relevance to Canadian policy-makers, including informed consent to hESC research, the use of fresh embryos in research, management of conflicts of interest, and the relevance of public opinion research to policy-making.

  9. Ethnographic Intimacy: Thinking Through the Ethics of Social Research in Sex Worlds

    OpenAIRE

    Maria Pérez-y-Pérez; Tony Stanley

    2011-01-01

    Ethnographic researchers entering sensitive fields of research become entangled in ethical dilemmas when they encounter 'sticky' questions, situations and issues. In undertaking research within two distinct sex worlds: female sex work and male sexual negotiation/risk and HIV, we struggled to manage the contingent links between our relationships with the people who inhabit these worlds, the ethical requirements of our institutional ethics committees, and our hybrid selves. In the context of 'd...

  10. Development and pilot testing of an online module for ethics education based on the Nigerian National Code for Health Research Ethics

    Science.gov (United States)

    2013-01-01

    Background The formulation and implementation of national ethical regulations to protect research participants is fundamental to ethical conduct of research. Ethics education and capacity are inadequate in developing African countries. This study was designed to develop a module for online training in research ethics based on the Nigerian National Code of Health Research Ethics and assess its ease of use and reliability among biomedical researchers in Nigeria. Methodology This was a three-phased evaluation study. Phase one involved development of an online training module based on the Nigerian Code of Health Research Ethics (NCHRE) and uploading it to the Collaborative Institutional Training Initiative (CITI) website while the second phase entailed the evaluation of the module for comprehensibility, readability and ease of use by 45 Nigerian biomedical researchers. The third phase involved modification and re-evaluation of the module by 30 Nigerian biomedical researchers and determination of test-retest reliability of the module using Cronbach’s alpha. Results The online module was easily accessible and comprehensible to 95% of study participants. There were significant differences in the pretest and posttest scores of study participants during the evaluation of the online module (p = 0.001) with correlation coefficients of 0.9 and 0.8 for the pretest and posttest scores respectively. The module also demonstrated excellent test-retest reliability and internal consistency as shown by Cronbach’s alpha coefficients of 0.92 and 0.84 for the pretest and posttest respectively. Conclusion The module based on the Nigerian Code was developed, tested and made available online as a valuable tool for training in cultural and societal relevant ethical principles to orient national and international biomedical researchers working in Nigeria. It would complement other general research ethics and Good Clinical Practice modules. Participants suggested that awareness of the

  11. Development and pilot testing of an online module for ethics education based on the Nigerian National Code for Health Research Ethics

    Directory of Open Access Journals (Sweden)

    Ogunrin Olubunmi A

    2013-01-01

    Full Text Available Abstract Background The formulation and implementation of national ethical regulations to protect research participants is fundamental to ethical conduct of research. Ethics education and capacity are inadequate in developing African countries. This study was designed to develop a module for online training in research ethics based on the Nigerian National Code of Health Research Ethics and assess its ease of use and reliability among biomedical researchers in Nigeria. Methodology This was a three-phased evaluation study. Phase one involved development of an online training module based on the Nigerian Code of Health Research Ethics (NCHRE and uploading it to the Collaborative Institutional Training Initiative (CITI website while the second phase entailed the evaluation of the module for comprehensibility, readability and ease of use by 45 Nigerian biomedical researchers. The third phase involved modification and re-evaluation of the module by 30 Nigerian biomedical researchers and determination of test-retest reliability of the module using Cronbach’s alpha. Results The online module was easily accessible and comprehensible to 95% of study participants. There were significant differences in the pretest and posttest scores of study participants during the evaluation of the online module (p = 0.001 with correlation coefficients of 0.9 and 0.8 for the pretest and posttest scores respectively. The module also demonstrated excellent test-retest reliability and internal consistency as shown by Cronbach’s alpha coefficients of 0.92 and 0.84 for the pretest and posttest respectively. Conclusion The module based on the Nigerian Code was developed, tested and made available online as a valuable tool for training in cultural and societal relevant ethical principles to orient national and international biomedical researchers working in Nigeria. It would complement other general research ethics and Good Clinical Practice modules. Participants

  12. Development and pilot testing of an online module for ethics education based on the Nigerian National Code for Health Research Ethics.

    Science.gov (United States)

    Ogunrin, Olubunmi A; Ogundiran, Temidayo O; Adebamowo, Clement

    2013-01-02

    The formulation and implementation of national ethical regulations to protect research participants is fundamental to ethical conduct of research. Ethics education and capacity are inadequate in developing African countries. This study was designed to develop a module for online training in research ethics based on the Nigerian National Code of Health Research Ethics and assess its ease of use and reliability among biomedical researchers in Nigeria. This was a three-phased evaluation study. Phase one involved development of an online training module based on the Nigerian Code of Health Research Ethics (NCHRE) and uploading it to the Collaborative Institutional Training Initiative (CITI) website while the second phase entailed the evaluation of the module for comprehensibility, readability and ease of use by 45 Nigerian biomedical researchers. The third phase involved modification and re-evaluation of the module by 30 Nigerian biomedical researchers and determination of test-retest reliability of the module using Cronbach's alpha. The online module was easily accessible and comprehensible to 95% of study participants. There were significant differences in the pretest and posttest scores of study participants during the evaluation of the online module (p = 0.001) with correlation coefficients of 0.9 and 0.8 for the pretest and posttest scores respectively. The module also demonstrated excellent test-retest reliability and internal consistency as shown by Cronbach's alpha coefficients of 0.92 and 0.84 for the pretest and posttest respectively. The module based on the Nigerian Code was developed, tested and made available online as a valuable tool for training in cultural and societal relevant ethical principles to orient national and international biomedical researchers working in Nigeria. It would complement other general research ethics and Good Clinical Practice modules. Participants suggested that awareness of the online module should be increased through seminars

  13. Customising informed consent procedures for people with schizophrenia in India.

    Science.gov (United States)

    Chatterjee, Sudipto; Kieselbach, Berit; Naik, Smita; Kumar, Shuba; John, Sujit; Balaji, Madhumitha; Koschorke, Mirja; Dabholkar, Hamid; Varghese, Mathew; Patel, Vikram; Thornicroft, Graham; Thara, Rangaswamy

    2015-10-01

    There is little information on how the ethical and procedural challenges involved in the informed participation of people with schizophrenia in clinical trials are addressed in low- and middle-income countries (LMICs). The informed consent procedure used in the collaborative community care for people with schizophrenia in India (COPSI) RCT was developed keeping these challenges in mind. We describe the feasibility of conducting the procedure from the trial, researcher and participants perspectives and describe the reasons for people consenting to participate in the trial or refusing to do so. Three sources of information were used to describe the feasibility of the COPSI consent procedure: key process indicators for the trial perspective, data from a specially designed post-interview form for participant's observations and focus group discussion (FGD) with the research interviewers. Categorical data were analysed by calculating frequencies and proportions, while the qualitative data from the FGD, and the reasons for participation or refusal were analysed using a thematic content analysis approach. 434 people with schizophrenia and their primary caregiver(s) were approached for participation in the trial. Consent interviews were conducted with 332, of whom 303 (91%) agreed to participate in the trial. Expectation of improvement was the most common reason for agreeing to participate in the trial, while concerns related to the potential disclosure of the illness, especially for women, were an important reason for refusing consent. The COPSI consent procedure demonstrates preliminary, observational information about the feasibility of customising informed consent procedures for people with schizophrenia LMIC contexts. This and other similar innovations need to be refined and rigorously tested to develop evidence-based guidelines for informed consent procedures in such settings.

  14. Procedure versus process: ethical paradigms and the conduct of qualitative research

    Science.gov (United States)

    2012-01-01

    Background Research is fundamental to improving the quality of health care. The need for regulation of research is clear. However, the bureaucratic complexity of research governance has raised concerns that the regulatory mechanisms intended to protect participants now threaten to undermine or stifle the research enterprise, especially as this relates to sensitive topics and hard to reach groups. Discussion Much criticism of research governance has focused on long delays in obtaining ethical approvals, restrictions imposed on study conduct, and the inappropriateness of evaluating qualitative studies within the methodological and risk assessment frameworks applied to biomedical and clinical research. Less attention has been given to the different epistemologies underlying biomedical and qualitative investigation. The bioethical framework underpinning current regulatory structures is fundamentally at odds with the practice of emergent, negotiated micro-ethics required in qualitative research. The complex and shifting nature of real world settings delivers unanticipated ethical issues and (occasionally) genuine dilemmas which go beyond easy or formulaic ‘procedural’ resolution. This is not to say that qualitative studies are ‘unethical’ but that their ethical nature can only be safeguarded through the practice of ‘micro-ethics’ based on the judgement and integrity of researchers in the field. Summary This paper considers the implications of contrasting ethical paradigms for the conduct of qualitative research and the value of ‘empirical ethics’ as a means of liberating qualitative (and other) research from an outmoded and unduly restrictive research governance framework based on abstract prinicipalism, divorced from real world contexts and values. PMID:23016663

  15. What Is Right? Ethics in Intellectual Disabilities Research

    Science.gov (United States)

    McDonald, Katherine E.; Kidney, Colleen A.

    2012-01-01

    There are important benefits to including adults with intellectual disabilities in research. Calls for their increased participation in research co-occur with notable discussion about how to conduct ethically strong research with adults with intellectual disabilities, a population widely considered vulnerable in the context of research. The…

  16. Variability in research ethics review of cluster randomized trials: a scenario-based survey in three countries

    Science.gov (United States)

    2014-01-01

    Background Cluster randomized trials (CRTs) present unique ethical challenges. In the absence of a uniform standard for their ethical design and conduct, problems such as variability in procedures and requirements by different research ethics committees will persist. We aimed to assess the need for ethics guidelines for CRTs among research ethics chairs internationally, investigate variability in procedures for research ethics review of CRTs within and among countries, and elicit research ethics chairs’ perspectives on specific ethical issues in CRTs, including the identification of research subjects. The proper identification of research subjects is a necessary requirement in the research ethics review process, to help ensure, on the one hand, that subjects are protected from harm and exploitation, and on the other, that reviews of CRTs are completed efficiently. Methods A web-based survey with closed- and open-ended questions was administered to research ethics chairs in Canada, the United States, and the United Kingdom. The survey presented three scenarios of CRTs involving cluster-level, professional-level, and individual-level interventions. For each scenario, a series of questions was posed with respect to the type of review required (full, expedited, or no review) and the identification of research subjects at cluster and individual levels. Results A total of 189 (35%) of 542 chairs responded. Overall, 144 (84%, 95% CI 79 to 90%) agreed or strongly agreed that there is a need for ethics guidelines for CRTs and 158 (92%, 95% CI 88 to 96%) agreed or strongly agreed that research ethics committees could be better informed about distinct ethical issues surrounding CRTs. There was considerable variability among research ethics chairs with respect to the type of review required, as well as the identification of research subjects. The cluster-cluster and professional-cluster scenarios produced the most disagreement. Conclusions Research ethics committees

  17. Ethical Issues in Conducting Research With Deaf Populations

    Science.gov (United States)

    Schlehofer, Deirdre; Thew, Denise

    2013-01-01

    Deaf American Sign Language (ASL) users represent a small population at risk for marginalization from research and surveillance activities resulting from cultural, language, and ethical challenges. The Deaf community’s view of deafness as a cultural identity, rather than a disability, contradicts the medical community’s perception of deafness as a disease or deficiency in need of correction or elimination. These differences continue to have significant cultural and social implications within the Deaf community, resulting in mistrust of research opportunities. Two particularly contentious ethical topics for the Deaf community are the absence of community representation in genetic research and the lack of accessible informed consents and research materials. This article outlines a series of innovative strategies and solutions to these issues, including the importance of community representation and collaboration with researchers studying deaf populations. PMID:24134363

  18. Science ethics education part II: changes in attitude toward scientific fraud among medical researchers after a short course in science ethics.

    Science.gov (United States)

    Vuckovic-Dekic, L; Gavrilovic, D; Kezic, I; Bogdanovic, G; Brkic, S

    2012-01-01

    To determine the impact of the short science ethics courses on the knowledge of basic principles of responsible conduct of research (RCR), and on the attitude toward scientific fraud among young biomedical researchers. A total of 361 attendees of the course on science ethics answered a specially designed anonymous multiple- choice questionnaire before and after a one-day course in science ethics. The educational course consisted of 10 lectures: 1) Good scientific practice - basic principles; 2) Publication ethics; 3) Scientific fraud - fabrication, falsification, plagiarism; 4) Conflict of interests; 5) Underpublishing; 6) Mentorship; 7) Authorship; 8) Coauthorship; 9) False authorship; 10) Good scientific practice - ethical codex of science. In comparison to their answers before the course, a significantly higher (pscience ethics as sufficient after the course was completed. That the wrongdoers deserve severe punishment for all types of scientific fraud, including false authorship, thought significantly (pscience ethics had a great impact on the attendees, enlarging their knowledge of responsible conduct of research and changing their previous, somewhat opportunistic, behavior regarding the reluctance to react publicly and punish the wrongdoers.

  19. Can UK NHS research ethics committees effectively monitor publication and outcome reporting bias?

    Science.gov (United States)

    Begum, Rasheda; Kolstoe, Simon

    2015-07-25

    Publication and outcome reporting bias is often caused by researchers selectively choosing which scientific results and outcomes to publish. This behaviour is ethically significant as it distorts the literature used for future scientific or clinical decision-making. This study investigates the practicalities of using ethics applications submitted to a UK National Health Service (NHS) research ethics committee to monitor both types of reporting bias. As part of an internal audit we accessed research ethics database records for studies submitting an end of study declaration to the Hampshire A research ethics committee (formerly Southampton A) between 1st January 2010 and 31st December 2011. A literature search was used to establish the publication status of studies. Primary and secondary outcomes stated in application forms were compared with outcomes reported in publications. Out of 116 studies the literature search identified 57 publications for 37 studies giving a publication rate of 32%. Original Research Ethics Committee (REC) applications could be obtained for 28 of the published studies. Outcome inconsistencies were found in 16 (57%) of the published studies. This study showed that the problem of publication and outcome reporting bias is still significant in the UK. The method described here demonstrates that UK NHS research ethics committees are in a good position to detect such bias due to their unique access to original research protocols. Data gathered in this way could be used by the Health Research Authority to encourage higher levels of transparency in UK research.

  20. Children in Medical Research : Ethical challenges

    NARCIS (Netherlands)

    W. Bos (Wendy)

    2017-01-01

    markdownabstractPaediatric research ethics evolves around a central dilemma. Either one has to accept that many childhood diseases cannot be (properly) treated and that many children receive treatments that are not (properly) tested in children, or one has to accept that children, i.e. vulnerable

  1. How Do Our Values Inform Ethical Research? A Narrative of Recognizing Colonizing Practices.

    Science.gov (United States)

    Dzidic, Peta; Bishop, Brian

    2017-12-01

    How do you reconcile tensions between ethical research practice, personal values, and disciplinary values? This article focuses on an ethical challenge involving the engagement of rural Indigenous community members that emerged during my PhD fieldwork. The narrative illustrates the necessity to engage in critical reflexive research practice, a process which saw me respond to my own feelings of "wrong" and "right," contemplate a distinction between procedural ethics and virtue ethics in community-based research, explore colonizing research practices, and endeavor to reconcile an instance where the values of community psychology appeared in contest. The "voice" in this narrative is that of the first author; the dual authorship reflects the ongoing collaboration between both authors. When this ethical issue came about, our relationship was one of "student" and "supervisor"; we are now colleagues and friends. © Society for Community Research and Action 2017.

  2. Ethical Gifts?: An Analysis of Soap-for-data Transactions in Malawian Survey Research Worlds.

    Science.gov (United States)

    Biruk, Crystal

    2017-09-01

    In 2008, thousands of Malawians received soap from an American research project as a gift for survey participation. Soap was deemed an ethical, non-coercive gift by researchers and ethics boards, but took on meanings that expressed recipients' grievances and aspirations. Research participants reframed soap and research benefits as "rights" they are entitled to, wages for "work," and a symbol of exploitation. Enlisting the perspectives of Malawi's ethics board, demographers, Malawian fieldworkers, and research participants, I describe how soap is spoken about and operates in research worlds. I suggest that neither a prescriptive nor a situated frame for ethics-with their investments in standardization and attention to context, respectively-provides answers about how to compensate Malawian research participants. The conclusion gestures toward a reparative framework for thinking ethics that is responsive not just to project-based parameters but also to the histories and political economy in which projects (and ethics) are situated. © 2017 by the American Anthropological Association.

  3. Ethical dilemmas in community-based participatory research: recommendations for institutional review boards.

    Science.gov (United States)

    Flicker, Sarah; Travers, Robb; Guta, Adrian; McDonald, Sean; Meagher, Aileen

    2007-07-01

    National and international codes of research conduct have been established in most industrialized nations to ensure greater adherence to ethical research practices. Despite these safeguards, however, traditional research approaches often continue to stigmatize marginalized and vulnerable communities. Community-based participatory research (CBPR) has evolved as an effective new research paradigm that attempts to make research a more inclusive and democratic process by fostering the development of partnerships between communities and academics to address community-relevant research priorities. As such, it attempts to redress ethical concerns that have emerged out of more traditional paradigms. Nevertheless, new and emerging ethical dilemmas are commonly associated with CBPR and are rarely addressed in traditional ethical reviews. We conducted a content analysis of forms and guidelines commonly used by institutional review boards (IRBs) in the USA and research ethics boards (REBs) in Canada. Our intent was to see if the forms used by boards reflected common CBPR experience. We drew our sample from affiliated members of the US-based Association of Schools of Public Health and from Canadian universities that offered graduate public health training. This convenience sample (n = 30) was garnered from programs where application forms were available online for download between July and August, 2004. Results show that ethical review forms and guidelines overwhelmingly operate within a biomedical framework that rarely takes into account common CBPR experience. They are primarily focused on the principle of assessing risk to individuals and not to communities and continue to perpetuate the notion that the domain of "knowledge production" is the sole right of academic researchers. Consequently, IRBs and REBs may be unintentionally placing communities at risk by continuing to use procedures inappropriate or unsuitable for CBPR. IRB/REB procedures require a new framework more

  4. Fulfilling an Ethical Obligation: An Educative Research Assistantship

    Science.gov (United States)

    McGinn, Michelle K.; Niemczyk, Ewelina K.; Saudelli, Mary Gene

    2013-01-01

    Scant research evidence is available about the day-to-day workings of research assistantships or the educational possibilities they provide for research assistants and their academic supervisors. This case study documents the equitable, educative, and ethical nature of one research assistantship at a Canadian university. Data sources include audio…

  5. Review: Will van den Hoonaard (Ed. (2002. Walking the Tightrope: Ethical Issues for Qualitative Researchers

    Directory of Open Access Journals (Sweden)

    Rod Gerber

    2004-05-01

    Full Text Available This publication basically represents a collection of former conference papers and some other contributions mainly by North American social scientists on the dilemmas that qualitative researchers encounter when they submit research applications to research ethics committees. Collectively, the contributions demonstrate the tensions that exist in the policy and practice of applied research ethics in qualitative research. Thirteen chapters are included in this volume. They focus on the themes of: differentiating between ethics and morality; dealing with ethics committees and policies; research processes; research ethics trends; and, ethical issues when submitting research applications. The emphasis is on research policy in a North American context (Canada and the United States, but can be relevant for qualitative researchers in other parts of the world. One challenge to this context is that it does not capture the essence of some European perspectives, especially those from Continental Europe. However, it does raise the issue of ethics in qualitative research to a high level. URN: urn:nbn:de:0114-fqs040214

  6. Ethical Challenges in Infant Feeding Research

    Directory of Open Access Journals (Sweden)

    Colin Binns

    2017-01-01

    Full Text Available Infants have a complex set of nutrient requirements to meet the demands of their high metabolic rate, growth, and immunological and cognitive development. Infant nutrition lays the foundation for health throughout life. While infant feeding research is essential, it must be conducted to the highest ethical standards. The objective of this paper is to discuss the implications of developments in infant nutrition for the ethics of infant feeding research and the implications for obtaining informed consent. A search was undertaken of the papers in the medical literature using the PubMed, Science Direct, Web of Knowledge, Proquest, and CINAHL databases. From a total of 9303 papers identified, the full text of 87 articles that contained discussion of issues in consent in infant feeding trials were obtained and read and after further screening 42 papers were included in the results and discussion. Recent developments in infant nutrition of significance to ethics assessment include the improved survival of low birth weight infants, increasing evidence of the value of breastfeeding and evidence of the lifelong importance of infant feeding and development in the first 1000 days of life in chronic disease epidemiology. Informed consent is a difficult issue, but should always include information on the value of preserving breastfeeding options. Project monitoring should be cognisant of the long term implications of growth rates and early life nutrition.

  7. The ethical framework for performing research with rare inherited neurometabolic disease patients.

    Science.gov (United States)

    Giannuzzi, Viviana; Devlieger, Hugo; Margari, Lucia; Odlind, Viveca Lena; Ragab, Lamis; Bellettato, Cinzia Maria; D'Avanzo, Francesca; Lampe, Christina; Cassis, Linda; Cortès-Saladelafont, Elisenda; Cazorla, Ángels Garcia; Barić, Ivo; Cvitanović-Šojat, Ljerka; Fumić, Ksenija; Dali, Christine I; Bartoloni, Franco; Bonifazi, Fedele; Scarpa, Maurizio; Ceci, Adriana

    2017-03-01

    The need for performing clinical trials to develop well-studied and appropriate medicines for inherited neurometabolic disease patients faces ethical concerns mainly raising from four aspects: the diseases are rare; include young and very young patients; the neurological impairment may compromise the capability to provide 'consent'; and the genetic nature of the disease leads to further ethical implications. This work is intended to identify the ethical provisions applicable to clinical research involving these patients and to evaluate if these cover the ethical issues. Three searches have been performed on the European regulatory/legal framework, the literature and European Union-funded projects. The European legal framework offers a number of ethical provisions ruling the clinical research on paediatric, rare, inherited diseases with neurological symptoms. In the literature, relevant publications deal with informed consent, newborn genetic screenings, gene therapy and rights/interests of research participants. Additional information raised from European projects on sharing patients' data from different countries, the need to fill the gap of the regulatory framework and to improve information to stakeholders and patients/families. Several recommendations and guidelines on ethical aspects are applicable to the inherited neurometabolic disease research in Europe, even though they suffer from the lack of a common ethical approach. What is Known: • When planning and conducting clinical trials, sponsors and researchers know that clinical trials are to be performed according to well-established ethical rules, and patients should be aware about their rights. • In the cases of paediatric patients, vulnerable patients unable to provide consent, genetic diseases' further rules apply. What is New: • This work discusses which ethical rules apply to ensure protection of patient's rights if all the above-mentioned features coexist. • This work shows available data and

  8. A cross-sectional survey to investigate community understanding of medical research ethics committees.

    Science.gov (United States)

    Fritschi, Lin; Kelsall, Helen L; Loff, Bebe; Slegers, Claudia; Zion, Deborah; Glass, Deborah C

    2015-07-01

    Study explanatory forms often state that an ethics committee has approved a research project. To determine whether the lay community understand the roles of ethics committees in research, we took a cross-sectional national sample from three sampling frames: the general population (n=1532); cohort study participants (n=397); and case-control study participants (n=151). About half (51.3%) of the participants had heard of ethics committees. Those who had were more likely to be those who had participated in previous surveys, older participants, those born in Australia and those with higher education. Almost all participants agreed that the roles of an ethics committee were to protect participants' privacy and ensure no harm came to study participants and most agreed that the committee's role was to ensure that the research was capable of providing answers. Case-control and cohort participants were more likely than the general population to consider that the role of an ethics committee was to design the research and obtain research funding. Overall, we found that about half of the population are aware of ethics committees and that most could correctly identify that ethics committees are there to protect the welfare and rights of research participants, although a substantial minority had some incorrect beliefs about the committees' roles. Increased education, particularly for migrants and older people, might improve understanding of the role of ethics committees in research. 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. The challenge of developing ethical guidelines for a research infrastructure

    Science.gov (United States)

    Kutsch, Werner Leo

    2016-04-01

    The mission of the Integrated Carbon Observation System (ICOS RI) is to enable research to understand the greenhouse gas (GHG) budgets and perturbations. The ICOS RI provides the long-term observations required to understand the present state and predict future behaviour of the global carbon cycle and GHG emissions. Technological developments and implementations, related to GHGs, will be promoted by the linking of research, education and innovation. In order to provide this data ICOS RI is a distributed research infrastructure. The backbones of ICOS RI are the national measurement stations such as ICOS atmosphere, ecosystem and ocean stations. ICOS Central Facilities are the European level ICOS RI Centres, which have the specific tasks in collecting and processing the data and samples received from the national measurement networks. During the establishment of ICOS RI ethical guidelines were developed. These guidelines describe principles of ethics in the research activities that should be applied within ICOS RI. They should be acknowledged and followed by all researchers affiliated to ICOS RI and should be supported by all participating institutions. The presentation describes (1) the general challenge to develop ethical guidelines in a complex international infrastructure and (2) gives an overview about the content that includes different kinds of conflicts of interests, data ethics and social responsibility.

  10. Culture, context and community: ethical considerations for global nursing research.

    Science.gov (United States)

    Harrowing, J N; Mill, J; Spiers, J; Kulig, J; Kipp, W

    2010-03-01

    High-quality research is essential for the generation of scientific nursing knowledge and the achievement of the Millennium Development Goals. However, the incorporation of Western bioethical principles in the study design may not be suitable, sufficient or relevant to participants in low-income countries and may indeed be harmful and disrespectful. Before engaging in global health studies, nurses must consider carefully the cultural and social context and values of the proposed setting in order to situate the research within the appropriate ethical framework. The purpose of this paper was to examine the ethical principles and considerations that guide health research conducted in international settings using the example of a qualitative study of Ugandan nurses and nurse-midwives by a Canadian researcher. The application of Western bioethical principles with their emphasis on autonomy fails to acknowledge the importance of relevant contextual aspects in the conduct of global research. Because ethics is concerned with how people interact and live together, it is essential that studies conducted across borders be respectful of, and congruent with, the values and needs of the community in which it occurs. The use of a communitarian ethical framework will allow nurse scientists to contribute to the elimination of inequities between those who enjoy prosperity and good health, and those who do not.

  11. Review of Ethics in Mental Health Research by James M. DuBois

    Directory of Open Access Journals (Sweden)

    Pies Ronald

    2008-04-01

    Full Text Available Abstract The burgeoning field of medical ethics raises complicated questions for mental health researchers. The critical issues of risk assessment, beneficence, and the moral duties researchers owe their patients are analyzed in James DuBois's well written Ethics in Mental Health Research.

  12. Research ethics I: Responsible conduct of research (RCR)--historical and contemporary issues pertaining to human and animal experimentation.

    Science.gov (United States)

    Horner, Jennifer; Minifie, Fred D

    2011-02-01

    In this series of articles--Research Ethics I, Research Ethics II, and Research Ethics III--the authors provide a comprehensive review of the 9 core domains for the responsible conduct of research (RCR) as articulated by the Office of Research Integrity. In Research Ethics I, they present a historical overview of the evolution of RCR in the United States then examine the evolution of human and animal experimentation from the birth of scientific medicine through World War II to the present day. They relied on authoritative documents, both historical and contemporary, insightful commentary, and empirical research in order to identify current issues and controversies of potential interest to both faculty and students. The authors have written this article from a historical perspective because they think all readers interested in RCR should appreciate how the history of science and all the good--and harm--it has produced can inform how researchers practice responsible research in the 21st century and beyond.

  13. Pharmacological cognitive enhancement-how neuroscientific research could advance ethical debate.

    Science.gov (United States)

    Maslen, Hannah; Faulmüller, Nadira; Savulescu, Julian

    2014-01-01

    THERE ARE NUMEROUS WAYS PEOPLE CAN IMPROVE THEIR COGNITIVE CAPACITIES: good nutrition and regular exercise can produce long-term improvements across many cognitive domains, whilst commonplace stimulants such as coffee temporarily boost levels of alertness and concentration. Effects like these have been well-documented in the medical literature and they raise few (if any) ethical issues. More recently, however, clinical research has shown that the off-label use of some pharmaceuticals can, under certain conditions, have modest cognition-improving effects. Substances such as methylphenidate and modafinil can improve capacities such as working memory and concentration in some healthy individuals. Unlike their more mundane predecessors, these methods of "cognitive enhancement" are thought to raise a multitude of ethical issues. This paper presents the six principal ethical issues raised in relation to pharmacological cognitive enhancers (PCEs)-issues such as whether: (1) the medical safety-profile of PCEs justifies restricting or permitting their elective or required use; (2) the enhanced mind can be an "authentic" mind; (3) individuals might be coerced into using PCEs; (4), there is a meaningful distinction to be made between the treatment vs. enhancement effect of the same PCE; (5) unequal access to PCEs would have implications for distributive justice; and (6) PCE use constitutes cheating in competitive contexts. In reviewing the six principal issues, the paper discusses how neuroscientific research might help advance the ethical debate. In particular, the paper presents new arguments about the contribution neuroscience could make to debates about justice, fairness, and cheating, ultimately concluding that neuroscientific research into "personalized enhancement" will be essential if policy is to be truly informed and ethical. We propose an "ethical agenda" for neuroscientific research into PCEs.

  14. Researchers' perceptions of the ethical implications of pharmacogenomics research with children.

    Science.gov (United States)

    Avard, D; Silverstein, T; Sillon, G; Joly, Y

    2009-01-01

    This paper presents the results of an exploratory qualitative study that assesses Canadian pediatric researchers' perceptions of a pre-selected group of ethical issues raised by pharmacogenomics research with children. As a pilot study, we conducted semi-structured telephone interviews with Canadian pediatric pharmacogenomic researchers. The interviews were guided by the following themes: (1) benefits and risks of inclusion, (2) the consent/assent process, and (3) the return of research results. Issues about assent, consent, risks and benefits, as well as the communication of results were addressed by the respondents. Some issues, such as the unique vulnerability of children, the long term privacy concerns associated with biobanking, additional core elements that need to be discussed and included in the consent/assent forms, as well as the challenges of communicating research results in a pediatric research were not explicitly identified by the respondents. Further consideration should be given to address the ethical challenges of including children in pharmacogenomics research. This exploratory study indicates that further guidance is needed if children are to be protected and yet benefit from such research. Copyright 2009 S. Karger AG, Basel.

  15. Considerations, clues and challenges: Gaining Ethical and Trust research approval when using the NHS as a research setting

    International Nuclear Information System (INIS)

    Jonker, Leon; Cox, Diane; Marshall, Gill

    2011-01-01

    Substantial changes have been made in recent years to the process of obtaining ethical and research governance approval for research projects in the NHS. The advent of the Integrated Research Application System (IRAS) has streamlined the process, providing a single point of entry. Ethical approval gained in one part of the country is now valid throughout the UK. The previous process of gaining research governance approval in NHS Trusts was maligned and it has been overhauled with the introduction of the National Institute of Health Research (NIHR) Coordinated System for gaining NHS Permission. In addition to updating the reader about the new processes around gaining ethical and Trust approval for research within an NHS setting, essential research project documentation needed for submission are discussed. The aspects of a proposal that Ethics Committees and Trust R and D Departments consider when reviewing applications are highlighted. The implemented changes to the research approval processes will mostly benefit large multi-centre studies; small scale unfunded studies and student projects are potentially at risk of being marginalised in the quest for a streamlined ethics and NHS Trust research governance approval process. However, researchers' familiarity with the approval system should minimise rejection rates and delays.

  16. Considerations, clues and challenges: Gaining Ethical and Trust research approval when using the NHS as a research setting

    Energy Technology Data Exchange (ETDEWEB)

    Jonker, Leon, E-mail: leon.jonker@cumbria.ac.uk [Faculty of Health and Wellbeing, University of Cumbria, Lancaster LA1 3JD (United Kingdom); Research and Development Department, North Cumbria University Hospitals NHS Trust, Carlisle CA2 7HY (United Kingdom); Cox, Diane; Marshall, Gill [Faculty of Health and Wellbeing, University of Cumbria, Lancaster LA1 3JD (United Kingdom)

    2011-08-15

    Substantial changes have been made in recent years to the process of obtaining ethical and research governance approval for research projects in the NHS. The advent of the Integrated Research Application System (IRAS) has streamlined the process, providing a single point of entry. Ethical approval gained in one part of the country is now valid throughout the UK. The previous process of gaining research governance approval in NHS Trusts was maligned and it has been overhauled with the introduction of the National Institute of Health Research (NIHR) Coordinated System for gaining NHS Permission. In addition to updating the reader about the new processes around gaining ethical and Trust approval for research within an NHS setting, essential research project documentation needed for submission are discussed. The aspects of a proposal that Ethics Committees and Trust R and D Departments consider when reviewing applications are highlighted. The implemented changes to the research approval processes will mostly benefit large multi-centre studies; small scale unfunded studies and student projects are potentially at risk of being marginalised in the quest for a streamlined ethics and NHS Trust research governance approval process. However, researchers' familiarity with the approval system should minimise rejection rates and delays.

  17. The ethical and legal regulation of HIV-vaccine research in Africa ...

    African Journals Online (AJOL)

    We discuss the general findings of the audit and the complex issues arising from HIV-vaccine research, specifically. Lastly, we propose specific ways in which the ethical/legal frameworks guiding research with human participants in these countries can be improved. Keywords: Africa, clinical trials, country profiles, ethics, ...

  18. 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.

  19. Introducing Ethics to Chemistry Students in a "Research Experiences for Undergraduates" (REU) Program

    Science.gov (United States)

    Hanson, Mark J.

    2015-01-01

    A three-day ethics seminar introduced ethics to undergraduate environmental chemistry students in the Research Experiences for Undergraduates (REU) program. The seminar helped students become sensitive to and understand the ethical and values dimensions of their work as researchers. It utilized a variety of resources to supplement lectures and…

  20. The ethical dilemma of embryonic stem cell research.

    Science.gov (United States)

    Manzar, Nabeel; Manzar, Bushra; Hussain, Nuzhat; Hussain, M Fawwad Ahmed; Raza, Sajjad

    2013-03-01

    To determine the knowledge, attitude, and ethical concerns of medical students and graduates with regard to Embryonic Stem Cell (ESC) research. This questionnaire based descriptive study was conducted at the Civil Hospital Karachi (CHK), Pakistan from February to July 2008. A well structured questionnaire was administered to medical students and graduate doctors, which included their demographic profile as well as questions in line with the study objective. Informed consent was taken and full confidentiality was assured to the participants. Data were entered in a Statistical Package for Social Sciences (SPSS version.12) and analyzed. A total of 204 male and 216 female medical students and doctors were administered questionnaires out of which 105 males (51.4%) and 108 females (50%) were aware of the embryonic stem cell research and its ethical implications. Forty percent males and 47% of females were of the opinion that life begins at conception. Forty-six percent males and 39% females were in favor of stem cell research while only 31% males and 28% females supported the ESC research. Less than 1/3 of students supported using frozen embryos for research purposes while more than 2/3 indicated that they were unlikely to support abortion for stem cell research purposes. The majority of the students were in favor of stem cell research with some reservations regarding ESC research. A sizeable number of students withheld their views, reflecting their poor understanding of medical ethics. The result of the study indicates a need for incorporating bioethics into the medical curriculum.

  1. Still Human: A Call for Increased Focus on Ethical Standards in Cadaver Research.

    Science.gov (United States)

    Bach, Michelle C

    2016-12-01

    Research on human cadavers is an important mechanism of scientific progress and comprises a large industry in the United States. However, despite its importance and influence, there is little ethical or regulatory oversight of cadaver-based research. This lack of transparency raises important ethical questions. Thus, this paper serves as a call for ethicists and regulators to pay increased attention to cadaver research. I argue that cadaver research ought to be considered a subset of human subjects research and held accountable to higher ethical standards. After describing current practices, I argue that oversight of cadaver research as a form of human subjects research is appropriate because cadaver research is similar to other types of human research, participants in cadaver research incur risks of harm, and a current lack of oversight has allowed the cadaver industry to entice research participation through ethically questionable practices. This paper urges greater dialogue among human subjects research ethicists and regulators about what constitutes appropriate protections for participants in cadaver research.

  2. Web-Based Research Ethics Training for Gerontologists

    Science.gov (United States)

    Scialfa, Charles T.; Lyndon, Jaci

    2008-01-01

    As part of a Canadian Institutes for Health Research (CIHR)-funded Strategic Training Grant, we have developed and delivered a brief course in research ethics directed toward postgraduate students in experimental gerontology. In this paper, we report on the initial offering, its content and delivery, and student reactions to the course. We…

  3. Committees for Ethics in Research involving human subjects.

    Science.gov (United States)

    Hossne, William Saad; Vieira, Sonia; De Freitas, Corina Bontempo Duca

    2008-01-01

    In Brazil since October 1996 there have been guidelines for research involving human subjects. Now human subjects know when their treatment is part of research. Deceit is no longer tolerated. But is not enough to say we offer an explanation to the potential subject and we offer a choice before he or she is confronted with an informed consent form. As in all professional activity, scientific investigation needs social controls. In Brazil, the ultimate responsibility of an investigation lies on the investigator, but in every institution where research is carried out there is a Committee for Ethics in Research. All Committees are subordinated to the National Commission of Ethics in Research, which is submitted to the Brazilian Institute of Health. During 2005 around 17,000 protocols involving 700,000 human subjects were revised by 475 Committees distributed all over the country. Approximately 7,000 people are now working in these Committees.

  4. Human subject research: reporting ethics approval and informed consent in 3 chiropractic journals.

    Science.gov (United States)

    Lawrence, Dana J

    2011-11-01

    To date, there have been no reports of ethics board approval or informed consent within the chiropractic literature or within chiropractic research. The purpose of this study was to assess the reporting of ethics approval and informed consent in articles published during the 2008 volume year of 3 chiropractic research journals included in PubMed. A quantitative assessment of the articles published in each journal for the 2008 volume year was performed. Information collected included if the article involved human subject research, if it reported ethics board approval, and if informed consent was given to subjects. Data were collected as descriptive statistics (frequency counts and percentages). In aggregate, 50 articles of a total of 143 published involved human subject research (35%). 44 reported ethics board approval (88%), and 28 reported that informed consent had been obtained (56%). Forty-five percent of articles published in the Journal of Manipulative and Physiological Therapeutics involved human subject research (39/87), of which 95% reported ethics board approval (37/39) and 64% reported informed consent (25/39); 12.5% of articles from the Journal of the Canadian Chiropractic Association involved human subject research (5/40), of which 80% reported ethics board approval (4/5) and 40% reported informed consent (2/5); and 37.5% of articles published in Chiropractic and Osteopathy involved human subject research (6/16), of which 50% reported ethics board approval (3/6) and 17% reported informed consent (1/6). Overall, most articles reported ethics approval, and more than half reported consent. This was harmonious with research on this topic from other disciplines. This situation indicates a need for continued quality improvement and for better instruction and dissemination of information on these issues to researchers, to manuscript reviewers, to journal editors, and to the readers. Copyright © 2011 National University of Health Sciences. Published by Mosby

  5. Research Ethics Review and Aboriginal Community Values: Can the Two be Reconciled?

    Science.gov (United States)

    Glass, Kathleen Cranley; Kaufert, Joseph

    2007-06-01

    CONTEMPORARY RESEARCH ETHICS REVIEW COMMITTEES (RECs) are heavily influenced by the established academic or health care institutional frameworks in which they operate, sharing a cultural, methodological and ethical perspective on the conduct of research involving humans. The principle of autonomous choice carries great weight in what is a highly individualistic decision-making process in medical practice and research. This assumes that the best protection lies in the ability of patients or research participants to make competent, voluntary, informed choices, evaluating the risks and benefits from a personal perspective. Over the past two decades, North American and international indigenous researchers, policy makers and communities have identified key issues of relevance to them, but ignored by most institutional or university-based RECs. They critique the current research review structure, and propose changes on a variety of levels in an attempt to develop more community sensitive research ethics review processes. In doing so, they have emphasized recognition of collective rights including community consent. Critics see alternative policy guidelines and community-based review bodies as challenging the current system of ethics review. Some view them as reflecting a fundamental difference in values. In this paper, we explore these developments in the context of the political, legal and ethical frameworks that have informed REC review. We examine the process and content of these frameworks and ask how this contrasts with emerging Aboriginal proposals for community-based research ethics review. We follow this with recommendations on how current REC review models might accommodate the requirements of both communities and RECs.

  6. A critical review of health research ethical guidelines regarding ...

    African Journals Online (AJOL)

    Trials, 2006;[22] and Ethics in Health Research Principles, Structures and Procedures, 2015[15]) regarding caregivers' consent in research involving minors as research ..... 11. Jeff H, Ramesh R, Sanjay MB. Pediatric airway management.

  7. Ethical issues in irregular migration research

    NARCIS (Netherlands)

    Duvell, F.; Triandafyllidou, A.; Vollmer, B.

    2008-01-01

    This paper is concerned with the ethical issues arising for researchers engaged in the study of irregular migration. Irregular migration is by definition an elusive phenomenon as it takes place in violation of the law and at the margins of society. This very nature of the phenomenon raises important

  8. Resolving legal, ethical, and human rights challenges in HIV vaccine research.

    Science.gov (United States)

    Patterson, D

    2000-01-01

    In the absence of a cure for AIDS, attention has turned to the possibility of developing a preventive vaccine for HIV infection. Yet many scientific, ethical, legal, and economic obstacles remain. At the current rate, the development and production of an effective vaccine could take 15 to 20 years or longer. If tens of millions more HIV infections and deaths are to be avoided in the coming decades, vaccine research needs to be greatly expedited. Furthermore, it must be undertaken ethically, and the products of this research must benefit people in developing countries. This article, an edited and updated version of a paper presented at "Putting Third First," addresses challenges arising in HIV preventive vaccine research in developing countries. It does not address clinical research in developing countries relating to treatments or therapeutic vaccines. Nor does it address legal and ethical issues relating to HIV vaccine research in industrialized countries, although similar issues arise in both contexts. The article concludes that while ethical codes are silent on the obligation to undertake research and development, international law provides strong legal obligations--particularly with regard to industrialized states--that should be invoked to accelerate HIV vaccine development, and distribution.

  9. Ethical Considerations in Conducting Research with Non-Native Speakers of English

    Science.gov (United States)

    Koulouriotis, Joanna

    2011-01-01

    The ethical considerations of three education researchers working with non-native English-speaking participants were examined from a critical theory stand-point in the light of the literature on research ethics in various disciplines. Qualitative inquiry and data analysis were used to identify key themes, which centered around honor and respect…

  10. Ethical issues associated with the use of animal experimentation in behavioral neuroscience research.

    Science.gov (United States)

    Ohl, Frauke; Meijboom, Franck

    2015-01-01

    This chapter briefly explores whether there are distinct characteristics in the field of Behavioral Neuroscience that demand specific ethical reflection. We argue that although the ethical issues in animal-based Behavioral Neuroscience are not necessarily distinct from those in other research disciplines using animal experimentation, this field of endeavor makes a number of specific, ethically relevant, questions more explicit and, as a result, may expose to discussion a series of ethical issues that have relevance beyond this field of science. We suggest that innovative research, by its very definition, demands out-of-the-box thinking. At the same time, standardization of animal models and test procedures for the sake of comparability across experiments inhibits the potential and willingness to leave well-established tracks of thinking, and leaves us wondering how open minded research is and whether it is the researcher's established perspective that drives the research rather than the research that drives the researcher's perspective. The chapter finishes by introducing subsequent chapters of this book volume on Ethical Issues in Behavioral Neuroscience.

  11. House Rules: Using the Television Series "House" to Teach Research Ethics

    Science.gov (United States)

    Andrews, Urkovia

    2013-01-01

    The purpose of this exercise is to get students to relay and connect with the impact of ethics on public relations research. Students will begin to realize and analyze how their personal ethics influence their professional ethics choices. This is conceptualized through the completion of the Collaborative Institutional Training Initiative (CITI)…

  12. [Risk factors of schizophrenia].

    Science.gov (United States)

    Suvisaari, Jaana

    2010-01-01

    Schizophrenia is a multifactorial, neurodevelopmental disorder caused by a combination of genetic and environmental risk factors. Disturbances of brain development begin prenatally, while different environmental insults further affect postnatal brain maturation during childhood and adolescence. Genome-wide association studies (GWAS) have succeeded in identifying hundreds of new risk variants for common, multifactorial diseases. In schizophrenia research, GWAS have found several rare copy number variants that considerably increase the risk of schizophrenia, and have shown an association between schizophrenia and the major histocompatibility complex. Research on environmental risk factors in recent years has provided new information particularly on risk factors related to pregnancy and childhood rearing environment. Gene-environment interactions have become a central research topic. There is evidence that genetically susceptible children are more vulnerable to the effects of unstable childhood rearing environment and other environmental risk factors.

  13. Ethics Leadership in Research, Healthcare and Organizational Systems: Commentary and Critical Reflections

    Science.gov (United States)

    Gabriele, Edward F.

    2011-01-01

    In the last decades there has arisen a greater awareness of the ever present need for critical academic reflection on the nature of ethics leadership and committees in research, healthcare, and organizational systems. Yet what is meant by ethics itself? How is ethics understood as a historical phenomenon? What challenges must ethics leaders face…

  14. [How to Understand "Clinical Ethics" and "Research Ethics" in Clinical Settings--Incorporation of IRB, REC, and CEC in Hospital Organizations].

    Science.gov (United States)

    Ita, Koichiro

    2016-02-01

    As the traditional definition of "medical ethics" has recently changed markedly with advances in medical knowledge and technology, medical doctors and researchers in Japan are required to understand and apply both research and clinical ethics. Quite frequently, ethical problems in clinical settings cannot be addressed by the simple application of good will, hard work, and perseverance by medical personnel. The Ministry of Health, Labour and Welfare (MHLW) and the Ministry of Education, Culture, Sports, Science and Technology (MEXT) have jointly published "Ethical Guidelines for Clinical Studies;" however, clear guidelines (legal, ministerial, or governmental) outlining the expectations regarding clinical ethics do not exist. All medical personnel face deep ethical dilemmas. In these instances, if the fulfillment of 'ethics' relies solely on the capacity of personnel to apply their own individual moral efforts, the result will be burn-out among these workers who have a strong sense of responsibility. In order to avoid this, a system which comprises multiple physicians, nurses, and other personnel must be established, allowing collaboration when an appropriate response is required. A major factor supporting this approach is the offering of Clinical Ethics Consultations.

  15. Graduate Students' Research Interest in Business Ethics: A Study of Dissertations

    Science.gov (United States)

    Piotrowski, Chris; Guyette, Roger W.

    2014-01-01

    Research on the nature of business ethics education during graduate-level training is somewhat limited. One approach in determining advanced students' research interest in the area is to examine the selection of "business ethics" topics for dissertation research. The current study addressed this issue by conducting a topical…

  16. Recognizing Risk and Vulnerability in Research Ethics: Imagining the "What Ifs?"

    Science.gov (United States)

    Peter, Elizabeth; Friedland, Judith

    2017-04-01

    Research ethics committees (RECs) may misunderstand the vulnerability of participants, given their distance from the field. What RECs identify as the vulnerabilities that were not adequately recognized in protocols and how they attempt to protect the perceived vulnerability of participants and mitigate risks were examined using the response letters sent to researchers by three university-based RECs. Using a critical qualitative method informed by feminist ethics, we identified an overarching theme of recognizing and responding to cascading vulnerabilities and four subthemes: identifying vulnerable groups, recognizing potentially risky research, imagining the "what ifs," and mitigating perceived risks. An ethics approach that is up-close, as opposed to distant, is needed to foster closer relationships among participants, researchers, and RECs and to understand participant vulnerability and strength better.

  17. Ethics policies and ethics work in cross-national genetic research and data sharing

    DEFF Research Database (Denmark)

    Hoeyer, Klaus; Tupasela, Aaro; Rasmussen, Malene B.

    2017-01-01

    of scientific work. This paper takes its point of departure in the practices of a Danish laboratory with great experience in international collaboration regarding genetic research. We focus on a simple query, what makes genetic material and health data flow, and which hopes and concerns travel along with them......In recent years, cross-national collaboration in medical research has gained increased policy attention. Policies are developed to enhance data sharing, ensure open-access, and harmonize international standards and ethics rules in order to promote access to existing resources and increase...... scientific output. In tandem with this promotion of data sharing, numerous ethics policies are developed to control data flows and protect privacy and confidentiality. Both sets of policy making, however, pay limited attention to the moral decisions and social ties enacted in the everyday routines...

  18. Managing ethical issues in sexual violence research using a pilot study

    Directory of Open Access Journals (Sweden)

    S.E. Duma

    2009-09-01

    Full Text Available Conducting research in the area of sexual violence has complex ethical and practical challenges for the researcher. Managing ethical issues in sexual violence is important and can be achieved through the use of pilot studies. The primary purpose of the pilot study was to identify and manage potential ethical and practical problems that could jeopardise the main study or violate the ethical and human rights of participants in the main study on women’s journey of recovery from sexual assault. The secondary purpose was to collect preliminary data in order to determine the human, financial and time resources needed for a planned study. The methods and processes used in conducting the pilot study in the study on women’s journey of recovery are discussed according to each of the objectives of the pilot study, methods used to achieve the objective, observations or findings made during the pilot study, and implications for the main study. This article aims to demonstrate how a pilot study was used to manage identified potential ethical and practical research issues during the recruitment of participants and data collection for the research that was conducted by the first author to investigate women’s journey of recovery from sexual assault trauma within the first week following sexual assault.

  19. Where are human subjects in Big Data research? The emerging ethics divide

    Directory of Open Access Journals (Sweden)

    Jacob Metcalf

    2016-06-01

    Full Text Available There are growing discontinuities between the research practices of data science and established tools of research ethics regulation. Some of the core commitments of existing research ethics regulations, such as the distinction between research and practice, cannot be cleanly exported from biomedical research to data science research. Such discontinuities have led some data science practitioners and researchers to move toward rejecting ethics regulations outright. These shifts occur at the same time as a proposal for major revisions to the Common Rule—the primary regulation governing human-subjects research in the USA—is under consideration for the first time in decades. We contextualize these revisions in long-running complaints about regulation of social science research and argue data science should be understood as continuous with social sciences in this regard. The proposed regulations are more flexible and scalable to the methods of non-biomedical research, yet problematically largely exclude data science methods from human-subjects regulation, particularly uses of public datasets. The ethical frameworks for Big Data research are highly contested and in flux, and the potential harms of data science research are unpredictable. We examine several contentious cases of research harms in data science, including the 2014 Facebook emotional contagion study and the 2016 use of geographical data techniques to identify the pseudonymous artist Banksy. To address disputes about application of human-subjects research ethics in data science, critical data studies should offer a historically nuanced theory of “data subjectivity” responsive to the epistemic methods, harms and benefits of data science and commerce.

  20. Ethical Justification of Moral Norms in Scientific Research: Scientists' External Responsibilities

    Directory of Open Access Journals (Sweden)

    Mehmet AKÖZER

    2015-09-01

    Full Text Available Scientists' moral responsibilities have become a focus for the scientific community over the postwar decades. International and regional networks of leading academic bodies have responded to a widely perceived increase in scientific fraud and the ensued loss of public trust in science during the 1980s, and initiated a discussion with a view to codifying good practice in research. While scientists' “external” responsibilities towards society and the humankind have been variously addressed, codes drafted since then mainly dwell on problems of misconduct concerning scientists' “internal” responsibilities towards science and to the scientific community. They also reflect an ethical pluralism, which declines justifying moral standards in research with reference to universal ethical principles. However, the need for such justification has been first recognized decades ago, during the Doctor's Trial in Nuremberg, where the shortcomings of the established ethos of science and the inadequacy of the Hippocratic ethics in safeguarding human rights in research had become flagrant, with the resultant Nuremberg Code of 1947 introducing a human rights perspective into Hippocratic ethics. This paper argues for the necessity of an integral ethical justification of scientists' both external and inner responsibilities, as put down or assumed by internationally acclaimed codes of conduct. Such necessity is validated by the evidence that a historical current to monopolize ethical thinking in the name of science and nullify philosophical ethics lies at the root of an anti–morality that relativized human worth and virtually legitimized human rights violations in scientific practice. Kantian ethics based on humans' absolute inner worth, and Popperian epistemology rooted in respect for truth and for humans as rational beings, pledge an ethical justification of moral norms in science so as to reinforce the latter against intrusions of anti–morality. The paper

  1. Doing Fieldwork on State Organizations in Democratic Settings: Ethical Issues of Research in Refugee Decision Making

    Directory of Open Access Journals (Sweden)

    Sule Tomkinson

    2014-11-01

    Full Text Available By drawing on eighteen months of ethnographic fieldwork and my field diaries in refugee decision-making in Canada, I make three arguments in this article. First, the binary of research in closed vs. open settings may have contributed to overlooking of ethical challenges of research in state organizations in democratic settings. We have to overcome this binary by opening a dialogue among ethnographers. Second, despite well-developed and diverse nature of scholarship on Research Ethics' Board's (REB formal practices and their negative impact on ethnographers' research proposals, the scarcity of scholarship on "ethics in practice" or "everyday ethics" show that we seem to forget that ethnographers, after receiving research ethics approval, still have to do considerable interpretation for what "being ethical" means. Finally, paying attention to "ethically important moments" during research practice may help us bridge the gap between principles of formal ethics and ethics in practice. Using field diaries in these reflections instead of more sanitized subsequent accounts illustrates the immediacy and importance of ethical concerns during research practice. URN: http://nbn-resolving.de/urn:nbn:de:0114-fqs150168

  2. Measuring inconsistency in research ethics committee review

    OpenAIRE

    Trace, Samantha; Kolstoe, Simon Erik

    2017-01-01

    Background The review of human participant research by Research Ethics Committees (RECs) or Institutional Review Boards (IRBs) is a complex multi-faceted process that cannot be reduced to an algorithm. However, this does not give RECs/ IRBs permission to be inconsistent in their specific requirements to researchers or in their final opinions. In England the Health Research Authority (HRA) coordinates 67 committees, and has adopted a consistency improvement plan including a process called “Sha...

  3. Ethical Issues in Stem Cell Research

    OpenAIRE

    Lo, Bernard; Parham, Lindsay

    2009-01-01

    Stem cell research offers great promise for understanding basic mechanisms of human development and differentiation, as well as the hope for new treatments for diseases such as diabetes, spinal cord injury, Parkinson’s disease, and myocardial infarction. However, human stem cell (hSC) research also raises sharp ethical and political controversies. The derivation of pluripotent stem cell lines from oocytes and embryos is fraught with disputes about the onset of human personhood. The reprogramm...

  4. IS ETHICAL HACKING ETHICAL?

    OpenAIRE

    MUHAMMAD NUMAN ALI KHAN; DANISH JAMIL,

    2011-01-01

    This paper explores the ethics behind ethical hacking and whether there are problems that lie with this new field of work. Since ethical hacking has been a controversial subject over the past few years, the question remains of the true intentions of ethical hackers. The paper also looks at ways in which future research could be looked intoto help keep ethical hacking, ethical.

  5. Pharmacological cognitive enhancement—how neuroscientific research could advance ethical debate

    Science.gov (United States)

    Maslen, Hannah; Faulmüller, Nadira; Savulescu, Julian

    2014-01-01

    There are numerous ways people can improve their cognitive capacities: good nutrition and regular exercise can produce long-term improvements across many cognitive domains, whilst commonplace stimulants such as coffee temporarily boost levels of alertness and concentration. Effects like these have been well-documented in the medical literature and they raise few (if any) ethical issues. More recently, however, clinical research has shown that the off-label use of some pharmaceuticals can, under certain conditions, have modest cognition-improving effects. Substances such as methylphenidate and modafinil can improve capacities such as working memory and concentration in some healthy individuals. Unlike their more mundane predecessors, these methods of “cognitive enhancement” are thought to raise a multitude of ethical issues. This paper presents the six principal ethical issues raised in relation to pharmacological cognitive enhancers (PCEs)—issues such as whether: (1) the medical safety-profile of PCEs justifies restricting or permitting their elective or required use; (2) the enhanced mind can be an “authentic” mind; (3) individuals might be coerced into using PCEs; (4), there is a meaningful distinction to be made between the treatment vs. enhancement effect of the same PCE; (5) unequal access to PCEs would have implications for distributive justice; and (6) PCE use constitutes cheating in competitive contexts. In reviewing the six principal issues, the paper discusses how neuroscientific research might help advance the ethical debate. In particular, the paper presents new arguments about the contribution neuroscience could make to debates about justice, fairness, and cheating, ultimately concluding that neuroscientific research into “personalized enhancement” will be essential if policy is to be truly informed and ethical. We propose an “ethical agenda” for neuroscientific research into PCEs. PMID:24999320

  6. Contesting the science/ethics distinction in the review of clinical research

    Science.gov (United States)

    Dawson, Angus J; Yentis, Steve M

    2007-01-01

    Recent policy in relation to clinical research proposals in the UK has distinguished between two types of review: scientific and ethical. This distinction has been formally enshrined in the recent changes to research ethics committee (REC) structure and operating procedures, introduced as the UK response to the EU Directive on clinical trials. Recent reviews and recommendations have confirmed the place of the distinction and the separate review processes. However, serious reservations can be mounted about the science/ethics distinction and the policy of separate review that has been built upon it. We argue here that, first, the science/ethics distinction is incoherent, and, second, that RECs should not only be permitted to consider a study's science, but that they have anobligation do so. PMID:17329389

  7. A network approach for distinguishing ethical issues in research and development.

    Science.gov (United States)

    Zwart, Sjoerd D; van de Poel, Ibo; van Mil, Harald; Brumsen, Michiel

    2006-10-01

    In this paper we report on our experiences with using network analysis to discern and analyse ethical issues in research into, and the development of, a new wastewater treatment technology. Using network analysis, we preliminarily interpreted some of our observations in a Group Decision Room (GDR) session where we invited important stakeholders to think about the risks of this new technology. We show how a network approach is useful for understanding the observations, and suggests some relevant ethical issues. We argue that a network approach is also useful for ethical analysis of issues in other fields of research and development. The abandoning of the overarching rationality assumption, which is central to network approaches, does not have to lead to ethical relativism.

  8. Promoting Ethics and Integrity in Management Academic Research: Retraction Initiative.

    Science.gov (United States)

    Ayodele, Freida Ozavize; Yao, Liu; Haron, Hasnah

    2018-02-13

    In the management academic research, academic advancement, job security, and the securing of research funds at one's university are judged mainly by one's output of publications in high impact journals. With bogus resumes filled with published journal articles, universities and other allied institutions are keen to recruit or sustain the appointment of such academics. This often places undue pressure on aspiring academics and on those already recruited to engage in research misconduct which often leads to research integrity. This structured review focuses on the ethics and integrity of management research through an analysis of retracted articles published from 2005 to 2016. The study employs a structured literature review methodology whereby retracted articles published between 2005 and 2016 in the field of management science were found using Crossref and Google Scholar. The searched articles were then streamlined by selecting articles based on their relevance and content in accordance with the inclusion criteria. Based on the analysed retracted articles, the study shows evidence of ethical misconduct among researchers of management science. Such misconduct includes data falsification, the duplication of submitted articles, plagiarism, data irregularity and incomplete citation practices. Interestingly, the analysed results indicate that the field of knowledge management includes the highest number of retracted articles, with plagiarism constituting the most significant ethical issue. Furthermore, the findings of this study show that ethical misconduct is not restricted to a particular geographic location; it occurs in numerous countries. In turn, avenues of further study on research misconduct in management research are proposed.

  9. Ethical Dilemmas in Community-Based Participatory Research: Recommendations for Institutional Review Boards

    Science.gov (United States)

    Travers, Robb; Guta, Adrian; McDonald, Sean; Meagher, Aileen

    2007-01-01

    National and international codes of research conduct have been established in most industrialized nations to ensure greater adherence to ethical research practices. Despite these safeguards, however, traditional research approaches often continue to stigmatize marginalized and vulnerable communities. Community-based participatory research (CBPR) has evolved as an effective new research paradigm that attempts to make research a more inclusive and democratic process by fostering the development of partnerships between communities and academics to address community-relevant research priorities. As such, it attempts to redress ethical concerns that have emerged out of more traditional paradigms. Nevertheless, new and emerging ethical dilemmas are commonly associated with CBPR and are rarely addressed in traditional ethical reviews. We conducted a content analysis of forms and guidelines commonly used by institutional review boards (IRBs) in the USA and research ethics boards (REBs) in Canada. Our intent was to see if the forms used by boards reflected common CBPR experience. We drew our sample from affiliated members of the US-based Association of Schools of Public Health and from Canadian universities that offered graduate public health training. This convenience sample (n = 30) was garnered from programs where application forms were available online for download between July and August, 2004. Results show that ethical review forms and guidelines overwhelmingly operate within a biomedical framework that rarely takes into account common CBPR experience. They are primarily focused on the principle of assessing risk to individuals and not to communities and continue to perpetuate the notion that the domain of “knowledge production” is the sole right of academic researchers. Consequently, IRBs and REBs may be unintentionally placing communities at risk by continuing to use procedures inappropriate or unsuitable for CBPR. IRB/REB procedures require a new framework

  10. Ethical Issues in Adolescents' Sexual and Reproductive Health Research in Nigeria.

    Science.gov (United States)

    Folayan, Morenike Oluwatoyin; Haire, Bridget; Harrison, Abigail; Odetoyingbo, Morolake; Fatusi, Olawunmi; Brown, Brandon

    2015-12-01

    There is increasing interest in the need to address the ethical dilemmas related to the engagement of adolescents in sexual and reproductive health (SRH) research. Research projects, including those that address issues related to STIs and HIV, adverse pregnancy outcomes, violence, and mental health, must be designed and implemented to address the needs of adolescents. Decisions on when an individual has adequate capacity to give consent for research most commonly use age as a surrogate rather than directly assessing capacity to understand the issues and make an informed decision on whether to participate in research or not. There is a perception that adolescents participating in research are more likely to be coerced and may therefore not fully comprehend the risk they may be taking when engaging in research. This paper examines the various ethical issues that may impact stakeholders' decision making when considering engaging adolescents in SRH research in Nigeria. It makes a case for lowering the age of consent for adolescents. While some experts believe it is possible to extrapolate relevant information from adult research, studies on ethical aspects of adolescents' participation in research are still needed, especially in the field of sexual and reproductive health where there are often differences in knowledge, attitudes and practices compared to adults. The particular challenges of applying the fundamental principles of research ethics to adolescent research, especially research about sex and sexuality, will only become clear if more studies are conducted. © 2014 John Wiley & Sons Ltd.

  11. Necessity for ethics in social engineering research

    CSIR Research Space (South Africa)

    Mouton, F

    2015-11-01

    Full Text Available Social engineering is deeply entrenched in the fields of both computer science and social psychology. Knowledge is required in both these disciplines to perform social engineering based research. Several ethical concerns and requirements need...

  12. Enhancing research ethics capacity in the Middle East: experience and challenges of a Fogarty-sponsored training program.

    Science.gov (United States)

    Silverman, Henry; Edwards, Hillary; Shamoo, Adil; Matar, Amal

    2013-12-01

    We describe the research ethics capacity needs of the countries from the Middle East region. Against this background, we relate the experience of an international training program focused on providing long-term training in research ethics to individuals from low and middle-income countries in the Middle East area. We describe our pedagogical approach to training, program changes to address challenges faced, and accomplishments of trainees. Many former trainees developed research ethics curricula in their home institutions, established or enhanced their institutions' research ethics committees, provided leadership to national research ethics systems, and conducted research in research ethics. Based on our analysis, we make recommendations for how trainees can further address current regional research ethics needs in the Middle East and conduct future research. This paper is part of a collection of papers analyzing the Fogarty International Center's International Research Ethics Education and Curriculum Development program.

  13. MORECare research methods guidance development: recommendations for ethical issues in palliative and end-of-life care research

    NARCIS (Netherlands)

    Gysels, M.; Evans, C.J.; Lewis, P.; Speck, P.; Benalia, H.; Preston, N.J.; Grande, G.E.; Short, V.; Owen-Jones, E.; Todd, C.J.; Higginson, I.J.

    2013-01-01

    Background: There is little guidance on the particular ethical concerns that research raises with a palliative care population. Aim: To present the process and outcomes of a workshop and consensus exercise on agreed best practice to accommodate ethical issues in research on palliative care. Design:

  14. Attitudes Toward the Ethics of Research Using Social Media: A Systematic Review

    Science.gov (United States)

    Ahmed, Shahd; Norman, Gill; Booth, Andrew

    2017-01-01

    Background Although primarily used for social networking and often used for social support and dissemination, data on social media platforms are increasingly being used to facilitate research. However, the ethical challenges in conducting social media research remain of great concern. Although much debated in the literature, it is the views of the public that are most pertinent to inform future practice. Objective The aim of our study was to ascertain attitudes on the ethical considerations of using social media as a data source for research as expressed by social media users and researchers. Methods A systematic review was conducted, wherein 16 databases and 2 Internet search engines were searched in addition to handsearching, reference checking, citation searching, and contacting authors and experts. Studies that conducted any qualitative methods to collect data on attitudes on the ethical implications of research using social media were included. Quality assessment was conducted using the quality of reporting tool (QuaRT) and findings analyzed using inductive thematic synthesis. Results In total, 17 studies met the inclusion criteria. Attitudes varied from overly positive with people expressing the views about the essential nature of such research for the public good, to very concerned with views that social media research should not happen. Underlying reasons for this variation related to issues such as the purpose and quality of the research, the researcher affiliation, and the potential harms. The methods used to conduct the research were also important. Many respondents were positive about social media research while adding caveats such as the need for informed consent or use restricted to public platforms only. Conclusions Many conflicting issues contribute to the complexity of good ethical practice in social media research. However, this should not deter researchers from conducting social media research. Each Internet research project requires an

  15. The relationships between patients' and caregivers' beliefs about the causes of schizophrenia and clinical outcomes in Latin American countries.

    Science.gov (United States)

    Caqueo-Urízar, Alejandra; Boyer, Laurent; Baumstarck, Karine; Gilman, Stephen E

    2015-09-30

    Beliefs about the causes of schizophrenia are thought to impact treatment outcomes. We investigated 3 theoretically opposing belief systems (biological, psychosocial, magical-religious) in relation to the severity of positive and negative symptoms and to attitudes towards medications. We recruited 253 patients with schizophrenia and their primary caregivers from public mental health clinics in Bolivia, Chile, and Peru. We assessed patients' and caregivers' beliefs about the causes of schizophrenia, which were used as predictors of symptom severity and medication attitudes in linear regression analyses. Patients' scores on biological, psychosocial, and magical-religious beliefs were positively correlated with one another, indicating that these domains were not, as anticipated, "opposing". Patients with higher levels of biological and psychosocial beliefs had significantly lower levels of positive and negative symptoms; in contrast, higher levels of magical-religious beliefs were associated with increased positive symptoms and less favorable attitudes towards medications. Patients' belief systems are significant predictors of symptom severity and medication attitudes. Research is needed on the extent to which psychotherapeutic treatments for schizophrenia should bolster patients' beliefs in the biological and psychosocial domains and weaken beliefs in the magical-religious domain; this research should also attend to the ethical considerations involved in intervening on belief systems cross-culturally. Copyright © 2015 Elsevier Ireland Ltd. All rights reserved.

  16. Ethical issues in paleopathological and anthropological research experiences.

    Science.gov (United States)

    Licata, Marta; Monza, Francesca

    2017-10-23

    In recent years, archaeologists and anthropologists involved in the study of human remains have had to take into consideration ethical issues, which have come to the fore. The aim of this study is to illustrate the ethical and religious issues involved in relation to the positions of researchers. Ethical issues involve the different study phases of human remains: archaeological excavation, anthropological analysis and, finally, museum display. Osteoarchaeological remains may find a place in museums. However, in recent years, even the display of human remains museum has had to face new important ethical issue involving previously ignored or neglected aspect. The adoption of Native American Grave Protection Act in 1990 in the United States and the Human Tissue Act in 2004 in England, has created new scenarios relating to the storage of human remains in museum. All this caused a series of changes in the study of human remains, but many issues remain open to debate.

  17. 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.

  18. Institutional ethical review and ethnographic research involving injection drug users: a case study.

    Science.gov (United States)

    Small, Will; Maher, Lisa; Kerr, Thomas

    2014-03-01

    Ethnographic research among people who inject drugs (PWID) involves complex ethical issues. While ethical review frameworks have been critiqued by social scientists, there is a lack of social science research examining institutional ethical review processes, particularly in relation to ethnographic work. This case study describes the institutional ethical review of an ethnographic research project using observational fieldwork and in-depth interviews to examine injection drug use. The review process and the salient concerns of the review committee are recounted, and the investigators' responses to the committee's concerns and requests are described to illustrate how key issues were resolved. The review committee expressed concerns regarding researcher safety when conducting fieldwork, and the investigators were asked to liaise with the police regarding the proposed research. An ongoing dialogue with the institutional review committee regarding researcher safety and autonomy from police involvement, as well as formal consultation with a local drug user group and solicitation of opinions from external experts, helped to resolve these issues. This case study suggests that ethical review processes can be particularly challenging for ethnographic projects focused on illegal behaviours, and that while some challenges could be mediated by modifying existing ethical review procedures, there is a need for legislation that provides legal protection of research data and participant confidentiality. Copyright © 2013 Elsevier Ltd. All rights reserved.

  19. Individual and organizational predictors of the ethicality of graduate students' responses to research integrity issues.

    Science.gov (United States)

    Langlais, Philip J; Bent, Blake J

    2014-12-01

    The development of effective means to enhance research integrity by universities requires baseline measures of individual, programmatic, and institutional factors known to contribute to ethical decision making and behavior. In the present study, master's thesis and Ph.D. students in the fields of biological, health and social sciences at a research extensive university completed a field appropriate measure of research ethical decision making and rated the seriousness of the research issue and importance for implementing the selection response. In addition they were asked to rate their perceptions of the institutional and departmental research climate and to complete a measure of utilitarian and formalistic predisposition. Female students were found to be more ethical in their decision making compared to male students. The research ethical decision measure was found to be related to participants' ethical predisposition and overall perception of organizational and departmental research climate; however, formalism was the only individual predictor to reach statistical significance and none of the individual subscales of the research climate measure were significantly correlated to ethicality. Participants' ratings of the seriousness of the issue were correlated with their ratings of the importance of carrying out their selected response but neither was significantly predictive of the ethicality of their responses. The implications of these findings for the development of more effective training programs and environments for graduate students in research ethics and integrity are discussed.

  20. Ethical principles of informed consent: exploring nurses' dual role of care provider and researcher.

    Science.gov (United States)

    Judkins-Cohn, Tanya M; Kielwasser-Withrow, Kiersten; Owen, Melissa; Ward, Jessica

    2014-01-01

    This article describes the ethical principles of autonomy, beneficence, and justice within the nurse researcher-participant relationship as these principles relate to the informed consent process for research. Within this process, the nurse is confronted with a dual role. This article describes how nurses, who are in the dual role of care provider and researcher, can apply these ethical principles to their practice in conjunction with the American Nurses Association's code of ethics for nurses. This article also describes, as an element of ethical practice, the importance of using participant-centered quality measures to aid informed decision making of participants in research. In addition, the article provides strategies for improving the informed consent process in nursing research. Finally, case scenarios are discussed, along with the application of ethical principles within the awareness of the dual role of the nurse as care provider and researcher. Copyright 2014, SLACK Incorporated.

  1. What makes public health studies ethical? Dissolving the boundary between research and practice

    Science.gov (United States)

    2014-01-01

    Background The generation of evidence is integral to the work of public health and health service providers. Traditionally, ethics has been addressed differently in research projects, compared with other forms of evidence generation, such as quality improvement, program evaluation, and surveillance, with review of non-research activities falling outside the purview of the research ethics board. However, the boundaries between research and these other evaluative activities are not distinct. Efforts to delineate a boundary – whether on grounds of primary purpose, temporality, underlying legal authority, departure from usual practice, or direct benefits to participants – have been unsatisfactory. Public Health Ontario has eschewed this distinction between research and other evaluative activities, choosing to adopt a common framework and process to guide ethical reflection on all public health evaluative projects throughout their lifecycle – from initial planning through to knowledge exchange. Discussion The Public Health Ontario framework was developed by a working group of public health and ethics professionals and scholars, in consultation with individuals representing a wide range of public health roles. The first part of the framework interprets the existing Canadian research ethics policy statement (commonly known as the TCPS 2) through a public health lens. The second part consists of ten questions that guide the investigator in the application of the core ethical principles to public health initiatives. The framework is intended for use by those designing and executing public health evaluations, as well as those charged with ethics review of projects. The goal is to move toward a culture of ethical integrity among investigators, reviewers and decision-makers, rather than mere compliance with rules. The framework is consonant with the perspective of the learning organization and is generalizable to other public health organizations, to health services

  2. What makes public health studies ethical? Dissolving the boundary between research and practice.

    Science.gov (United States)

    Willison, Donald J; Ondrusek, Nancy; Dawson, Angus; Emerson, Claudia; Ferris, Lorraine E; Saginur, Raphael; Sampson, Heather; Upshur, Ross

    2014-08-08

    The generation of evidence is integral to the work of public health and health service providers. Traditionally, ethics has been addressed differently in research projects, compared with other forms of evidence generation, such as quality improvement, program evaluation, and surveillance, with review of non-research activities falling outside the purview of the research ethics board. However, the boundaries between research and these other evaluative activities are not distinct. Efforts to delineate a boundary - whether on grounds of primary purpose, temporality, underlying legal authority, departure from usual practice, or direct benefits to participants - have been unsatisfactory.Public Health Ontario has eschewed this distinction between research and other evaluative activities, choosing to adopt a common framework and process to guide ethical reflection on all public health evaluative projects throughout their lifecycle - from initial planning through to knowledge exchange. The Public Health Ontario framework was developed by a working group of public health and ethics professionals and scholars, in consultation with individuals representing a wide range of public health roles. The first part of the framework interprets the existing Canadian research ethics policy statement (commonly known as the TCPS 2) through a public health lens. The second part consists of ten questions that guide the investigator in the application of the core ethical principles to public health initiatives.The framework is intended for use by those designing and executing public health evaluations, as well as those charged with ethics review of projects. The goal is to move toward a culture of ethical integrity among investigators, reviewers and decision-makers, rather than mere compliance with rules. The framework is consonant with the perspective of the learning organization and is generalizable to other public health organizations, to health services organizations, and beyond. Public

  3. Evaluating institutional capacity for research ethics in Africa: a case study from Botswana

    Science.gov (United States)

    2013-01-01

    Background The increase in the volume of research conducted in Low and Middle Income Countries (LMIC), has brought a renewed international focus on processes for ethical conduct of research. Several programs have been initiated to strengthen the capacity for research ethics in LMIC. However, most such programs focus on individual training or development of ethics review committees. The objective of this paper is to present an approach to institutional capacity assessment in research ethics and application of this approach in the form of a case study from an institution in Africa. Methods We adapted the Octagon model originally used by the Swedish International Development Cooperation Agency to assess an organization along eight domains in research ethics: basic values and identity; structure and organization; ability to carry out activities; relevance of activities to stated goals; capacity of staff and management; administrative, financing and accounting systems; its relations with target groups; and the national context. We used a mixed methods approach to collect empirical data at the University of Botswana from March to December 2010. Results The overall shape of the external evaluation Octagon suggests that strengths of the University of Botswana are in the areas of structure, relevance, production and identity; while the university still needs more work in the areas of systems of finance, target groups, and environment. The Octagons also show the similarities and discrepancies between the 'external' and 'internal' evaluations and provide an opportunity for exploration of these different assessments. For example, the discrepant score for 'identity' between internal and external evaluations allows for an exploration of what constitutes a strong identity for research ethics at the University of Botswana and how it can be strengthened. Conclusions There is a general lack of frameworks for evaluating research ethics capacity in LMICs. We presented an approach that

  4. Evaluating institutional capacity for research ethics in Africa: a case study from Botswana.

    Science.gov (United States)

    Hyder, Adnan A; Zafar, Waleed; Ali, Joseph; Ssekubugu, Robert; Ndebele, Paul; Kass, Nancy

    2013-07-30

    The increase in the volume of research conducted in Low and Middle Income Countries (LMIC), has brought a renewed international focus on processes for ethical conduct of research. Several programs have been initiated to strengthen the capacity for research ethics in LMIC. However, most such programs focus on individual training or development of ethics review committees. The objective of this paper is to present an approach to institutional capacity assessment in research ethics and application of this approach in the form of a case study from an institution in Africa. We adapted the Octagon model originally used by the Swedish International Development Cooperation Agency to assess an organization along eight domains in research ethics: basic values and identity; structure and organization; ability to carry out activities; relevance of activities to stated goals; capacity of staff and management; administrative, financing and accounting systems; its relations with target groups; and the national context. We used a mixed methods approach to collect empirical data at the University of Botswana from March to December 2010. The overall shape of the external evaluation Octagon suggests that strengths of the University of Botswana are in the areas of structure, relevance, production and identity; while the university still needs more work in the areas of systems of finance, target groups, and environment. The Octagons also show the similarities and discrepancies between the 'external' and 'internal' evaluations and provide an opportunity for exploration of these different assessments. For example, the discrepant score for 'identity' between internal and external evaluations allows for an exploration of what constitutes a strong identity for research ethics at the University of Botswana and how it can be strengthened. There is a general lack of frameworks for evaluating research ethics capacity in LMICs. We presented an approach that stresses evaluation from both internal

  5. Perception, understanding and practice of ethics during research on ...

    African Journals Online (AJOL)

    Background: Scandals have occurred over time involving conduct of research in different parts of the world. This study was aimed at exploring researchers' perception, understanding, appreciation and practice of research ethics during research on human subjects. Methods: A qualitative approach using the exploratory and ...

  6. Ethical issues in engineering models: an operations researcher's reflections.

    Science.gov (United States)

    Kleijnen, J

    2011-09-01

    This article starts with an overview of the author's personal involvement--as an Operations Research consultant--in several engineering case-studies that may raise ethical questions; e.g., case-studies on nuclear waste, water management, sustainable ecology, military tactics, and animal welfare. All these case studies employ computer simulation models. In general, models are meant to solve practical problems, which may have ethical implications for the various stakeholders; namely, the modelers, the clients, and the public at large. The article further presents an overview of codes of ethics in a variety of disciples. It discusses the role of mathematical models, focusing on the validation of these models' assumptions. Documentation of these model assumptions needs special attention. Some ethical norms and values may be quantified through the model's multiple performance measures, which might be optimized. The uncertainty about the validity of the model leads to risk or uncertainty analysis and to a search for robust models. Ethical questions may be pressing in military models, including war games. However, computer games and the related experimental economics may also provide a special tool to study ethical issues. Finally, the article briefly discusses whistleblowing. Its many references to publications and websites enable further study of ethical issues in modeling.

  7. Assessing the public's views in research ethics controversies: deliberative democracy and bioethics as natural allies.

    Science.gov (United States)

    Kim, Scott Y H; Wall, Ian F; Stanczyk, Aimee; De Vries, Raymond

    2009-12-01

    In a liberal democracy, policy decisions regarding ethical controversies, including those in research ethics, should incorporate the opinions of its citizens. Eliciting informed and well-considered ethical opinions can be challenging. The issues may not be widely familiar and they may involve complex scientific, legal, historical, and ethical dimensions. Traditional surveys risk eliciting superficial and uninformed opinions that may be of dubious quality for policy formation. We argue that the theory and practice of deliberative democracy (DD) is especially useful in overcoming such inadequacies. We explain DD theory and practice, discuss the rationale for using DD methods in research ethics, and illustrate in depth the use of a DD method for a longstanding research ethics controversy involving research based on surrogate consent. The potential pitfalls of DD and the means of minimizing them as well as future research directions are also discussed.

  8. Social Media Channels in Health Care Research and Rising Ethical Issues.

    Science.gov (United States)

    Azer, Samy A

    2017-11-01

    Social media channels such as Twitter, Facebook, and LinkedIn have been used as tools in health care research, opening new horizons for research on health-related topics (e.g., the use of mobile social networking in weight loss programs). While there have been efforts to develop ethical guidelines for internet-related research, researchers still face unresolved ethical challenges. This article investigates some of the risks inherent in social media research and discusses how researchers should handle challenges related to confidentiality, privacy, and consent when social media tools are used in health-related research. © 2017 American Medical Association. All Rights Reserved.

  9. Neurodevelopment, GABA system dysfunction, and schizophrenia.

    Science.gov (United States)

    Schmidt, Martin J; Mirnics, Karoly

    2015-01-01

    The origins of schizophrenia have eluded clinicians and researchers since Kraepelin and Bleuler began documenting their findings. However, large clinical research efforts in recent decades have identified numerous genetic and environmental risk factors for schizophrenia. The combined data strongly support the neurodevelopmental hypothesis of schizophrenia and underscore the importance of the common converging effects of diverse insults. In this review, we discuss the evidence that genetic and environmental risk factors that predispose to schizophrenia disrupt the development and normal functioning of the GABAergic system.

  10. Neurodevelopment, GABA System Dysfunction, and Schizophrenia

    Science.gov (United States)

    Schmidt, Martin J; Mirnics, Karoly

    2015-01-01

    The origins of schizophrenia have eluded clinicians and researchers since Kraepelin and Bleuler began documenting their findings. However, large clinical research efforts in recent decades have identified numerous genetic and environmental risk factors for schizophrenia. The combined data strongly support the neurodevelopmental hypothesis of schizophrenia and underscore the importance of the common converging effects of diverse insults. In this review, we discuss the evidence that genetic and environmental risk factors that predispose to schizophrenia disrupt the development and normal functioning of the GABAergic system. PMID:24759129

  11. RESEARCH ON ENVIRONMENTAL HEALTH INTERVENTIONS: ETHICAL PROBLEMS AND SOLUTIONS

    Science.gov (United States)

    RESNIK, DAVID B.; ZELDIN, DARRYL C.; SHARP, RICHARD R.

    2014-01-01

    This article reviews a variety of ethical issues one must consider when conducting research on environmental health interventions on human subjects. The paper uses the Kennedy Krieger Institute lead abatement study as well as a hypothetical asthma study to discuss questions concerning benefits and risks, risk minimization, safety monitoring, the duty to warn, the duty to report, the use of control groups, informed consent, equitable subject selection, privacy, conflicts of interest, and community consultation. Research on environmental health interventions can make an important contribution to our understanding of human health and disease prevention, provided it is conducted in a manner that meets prevailing scientific, ethical, and legal standards for research on human subjects. PMID:16220621

  12. [Institutional ethics committees in Mexico: the ambiguous boundary between health care ethics and research ethics].

    Science.gov (United States)

    Valdez-Martínez, Edith; Lifshitz-Guinzberg, Alberto; Medesigo-Micete, José; Bedolla, Miguel

    2008-08-01

    To identify ethics committees in medical practice in Mexico and possible implications stemming from their composition and functions. A cross-sectional descriptive study was conducted from January-December 2005. A survey was sent by e-mail to the hospitals and family medicine centers with at 10 practices within the Mexican Institute for Social Security (Instituto Mexicano del Seguro Social) (n=437) and the Institute for Security and Social Services for State Employees (Seguridad y Servicios Sociales de los Trabajadores del Estado) (n=167) and to the Mexican Ministry of Health's most important health care centers (n=15). The following items were analyzed: name of the committee, date of formation, current status, composition, functions, and level of authority. In all, 116 committees were identified, with various names. Of these, 101 (87.1%) were active. The committees were formed from 1985-2006, with a spike occurring in 2004-2005. Of the active committees, 59 (58.4%) were charged with ethical problems/dilemmas related to clinical practice as well as those related to research projects. Of the committee members, 357 (59.0%) held managing positions in the establishment to which the committee pertained; most were medical professionals (71.5%), followed by nursing staff (11.9%). Among the members of the active committees, 77.9% had not received training in ethics. Legal conflicts can be expected, mainly within the organizations whose committees have the authority to determine a course of action. An integrated plan is needed that will set standards for the composition and proceedings of Mexico's ethics committees and the improved training of committee members.

  13. 40 CFR 26.1303 - Submission of information pertaining to ethical conduct of completed human research.

    Science.gov (United States)

    2010-07-01

    ... ethical conduct of completed human research. 26.1303 Section 26.1303 Protection of Environment... on the Ethical Conduct of Completed Human Research § 26.1303 Submission of information pertaining to ethical conduct of completed human research. Any person who submits to EPA data derived from human...

  14. Building research capacity with members of underserved American Indian/Alaskan Native communities: training in research ethics and the protection of human subjects.

    Science.gov (United States)

    Jetter, Karen M; Yarborough, Mark; Cassady, Diana L; Styne, Dennis M

    2015-05-01

    To develop a research ethics training course for American Indian/Alaskan Native health clinic staff and community researchers who would be conducting human subjects research. Community-based participatory research methods were used in facilitated discussions of research ethics centered around topics included in the Collaborative Institutional Training Initiative research ethics course. The community-based participatory research approach allowed all partners to jointly develop a research ethics training program that was relevant for American Indian/Alaskan Native communities. All community and clinic partners were able to pass the Collaborative Institutional Training Initiative course they were required to pass so that they could be certified to conduct research with human subjects on federally funded projects. In addition, the training sessions provided a foundation for increased community oversight of research. By using a collaborative process to engage community partners in research ethics discussions, rather than either an asynchronous online or a lecture/presentation format, resulted in significant mutual learning about research ethics and community concerns about research. This approach requires university researchers to invest time in learning about the communities in which they will be working prior to the training. © 2014 Society for Public Health Education.

  15. Research Ethics Capacity Building in Sub-Saharan Africa: A Review of NIH Fogarty-Funded Programs 2000–2012

    Science.gov (United States)

    Ndebele, Paul; Wassenaar, Douglas; Benatar, Solomon; Fleischer, Theodore; Kruger, Mariana; Adebamowo, Clement; Kass, Nancy; Hyder, Adnan A.; Meslin, Eric M.

    2014-01-01

    The last fifteen years have witnessed a significant increase in investment in research ethics capacity development throughout the world. We examine nine research ethics training programs that are focused on Sub-Saharan Africa and supported by the US National Institutes of Health. We collected data from grants awards’ documents and annual reports supplemented by questionnaires completed by the training program directors. Together, these programs provided long-term training in research ethics to 275 African professionals, strengthened research ethics committees in 19 countries in Sub-Saharan Africa, and created research ethics curricula at many institutions and bioethics centers within Africa. Trainees’ leadership resulted in new national systems and policies on research ethics, human tissue storage and export, and methods of monitoring compliance with research ethics guidelines. Training programs adapted to challenges that arose due to varied trainees’ background knowledge in ethics, duration of time available for training, spoken and written English language skills, administrative obstacles, and the need to sustain post-training research ethics activities. Our report showcases the development of awareness of research ethics and building/strengthening of basic research ethics infrastructure in Sub-Saharan Africa. Nevertheless, the increasing amount and complexity of health research being conducted in Sub-Saharan Africa suggests the need for continued investment in research ethics capacity development in this region. This paper is part of a collection of papers analyzing the Fogarty International Center’s International Research Ethics Education and Curriculum Development program. PMID:24782070

  16. Research ethics capacity building in Sub-Saharan Africa: a review of NIH Fogarty-funded programs 2000–2012.

    Science.gov (United States)

    Ndebele, Paul; Wassenaar, Douglas; Benatar, Solomon; Fleischer, Theodore; Kruger, Mariana; Adebamowo, Clement; Kass, Nancy; Hyder, Adnan A; Meslin, Eric M

    2014-04-01

    The last fifteen years have witnessed a significant increase in investment in research ethics capacity development throughout the world. We examine nine research ethics training programs that are focused on Sub-Saharan Africa and supported by the US National Institutes of Health. We collected data from grants awards' documents and annual reports supplemented by questionnaires completed by the training program directors. Together, these programs provided long-term training in research ethics to 275 African professionals, strengthened research ethics committees in 19 countries in Sub-Saharan Africa, and created research ethics curricula at many institutions and bioethics centers within Africa. Trainees' leadership resulted in new national systems and policies on research ethics, human tissue storage and export, and methods of monitoring compliance with research ethics guidelines. Training programs adapted to challenges that arose due to varied trainees' background knowledge in ethics, duration of time available for training, spoken and written English language skills, administrative obstacles, and the need to sustain post-training research ethics activities. Our report showcases the development of awareness of research ethics and building/strengthening of basic research ethics infrastructure in Sub-Saharan Africa. Nevertheless, the increasing amount and complexity of health research being conducted in Sub-Saharan Africa suggests the need for continued investment in research ethics capacity development in this region. This paper is part of a collection of papers analyzing the Fogarty International Center's International Research Ethics Education and Curriculum Development program.

  17. The Ethics of Clinical Trials Research in Severe Mood Disorders.

    Science.gov (United States)

    Nugent, Allison C; Miller, Franklin G; Henter, Ioline D; Zarate, Carlos A

    2017-07-01

    Mood disorders, including major depressive disorder (MDD) and bipolar disorder (BD), are highly prevalent, frequently disabling, and sometimes deadly. Additional research and more effective medications are desperately needed, but clinical trials research in mood disorders is fraught with ethical issues. Although many authors have discussed these issues, most do so from a theoretical viewpoint. This manuscript uses available empirical data to inform a discussion of the primary ethical issues raised in mood disorders research. These include issues of consent and decision-making capacity, including patients' motivations for participating in research. We also address drug withdrawals, placebo controls, and the overall safety of research. Finally, we examine the extant literature for studies discussing potential indirect benefits of clinical trials research to participants. Taken together, the evidence suggests that clinical trials research incorporating drug withdrawals and placebo controls can be conducted safely and ethically, even in patients with severe or treatment-resistant mood disorders. In fact, given the dearth of effective treatment options for this population, it is our opinion that a moral imperative exists to extend the offer of research participation to severely ill or treatment-resistant groups. Published 2017. This article is a U.S. Government work and is in the public domain in the USA.

  18. Raising Awareness of Research Ethics in SoTL: The Role of Educational Developers

    Science.gov (United States)

    Stockley, Denise; Balkwill, Laura-Lee

    2013-01-01

    Does the subject of research ethics take you by surprise? Does it make you somewhat uncomfortable? Does it seem to have nothing to do with your research or your practice? These are the attitudes we have encountered about research ethics among some SoTL researchers at workshops and conferences. In many cases, these researchers had conducted…

  19. The relationship of ethics to quality: the particular case of research in autism

    OpenAIRE

    Waltz, Mitzi

    2007-01-01

    What is the relationship between ethics and quality in education research? This paper explores factors that bind the two too tightly together for extrication, including representation of subjects and researcher mindsets, the setting of research agendas, research design, and funding. It argues that ethical concerns go beyond informed consent and prevention of harm, and that unethical research fails when examined for research quality.

  20. Attitudes Toward the Ethics of Research Using Social Media: A Systematic Review.

    Science.gov (United States)

    Golder, Su; Ahmed, Shahd; Norman, Gill; Booth, Andrew

    2017-06-06

    Although primarily used for social networking and often used for social support and dissemination, data on social media platforms are increasingly being used to facilitate research. However, the ethical challenges in conducting social media research remain of great concern. Although much debated in the literature, it is the views of the public that are most pertinent to inform future practice. The aim of our study was to ascertain attitudes on the ethical considerations of using social media as a data source for research as expressed by social media users and researchers. A systematic review was conducted, wherein 16 databases and 2 Internet search engines were searched in addition to handsearching, reference checking, citation searching, and contacting authors and experts. Studies that conducted any qualitative methods to collect data on attitudes on the ethical implications of research using social media were included. Quality assessment was conducted using the quality of reporting tool (QuaRT) and findings analyzed using inductive thematic synthesis. In total, 17 studies met the inclusion criteria. Attitudes varied from overly positive with people expressing the views about the essential nature of such research for the public good, to very concerned with views that social media research should not happen. Underlying reasons for this variation related to issues such as the purpose and quality of the research, the researcher affiliation, and the potential harms. The methods used to conduct the research were also important. Many respondents were positive about social media research while adding caveats such as the need for informed consent or use restricted to public platforms only. Many conflicting issues contribute to the complexity of good ethical practice in social media research. However, this should not deter researchers from conducting social media research. Each Internet research project requires an individual assessment of its own ethical issues

  1. [Bioethical Approach for Nursing Research -Focused on the Use of Research Ethics Committees].

    Science.gov (United States)

    Jeong, Ihn Sook

    2015-06-01

    This paper was written to introduce methods of using the research ethics committee (RES) from requesting the initial review to reporting the close-out for nursing researchers. General ethical principles were described by reviewing the 'Bioethics and Safety Act' and other related guidelines, and constructing some questions and answers. The results were composed of three parts; definition of RES, steps in using RES, and archiving. The 7 steps for using RES were; identifying whether the study needed to be reviewed, by the RES identifying whether the study could be exempted, requesting the initial review after preparing documents, requesting the re-review, requesting an amendment review, requesting a continuing review and reporting the close-out. Nursing researchers need to receive RES approval before starting nursing research involving human subjects. Nursing researchers are urged to use the steps reported in this paper to receive RES approval easily and quickly.

  2. Can an ethics officer role reduce delays in research ethics approval? A mixed-method evaluation of an improvement project

    Science.gov (United States)

    Dixon-Woods, Mary; Foy, Chris; Hayden, Charlotte; Al-Shahi Salman, Rustam; Tebbutt, Stephen; Schroter, Sara

    2016-01-01

    Objective Frustration continues to be directed at delays in gaining approvals for undertaking health research in the UK. We aimed to evaluate the impact of an ethics officer intervention on rates of favourable opinions (approval) and provisional opinions (requiring revision and resubmission) and on the time taken to reach a final opinion by research ethics committees (RECs), to characterise how the role operated in practice, and to investigate applicants' views. Design Mixed-method study involving (i) a 2-group, non-randomised before-and-after intervention study of RECs assigned an ethics officer and a matched comparator group; (ii) a process evaluation involving a survey of applicants and documentary analysis. Participants 6 RECs and 3 associated ethics officers; 18 comparator RECs; REC applicants. Results Rates of provisional and favourable opinions between ethics officer and comparator RECs did not show a statistically significant effect of the intervention (logistic regression, p=0.26 for favourable opinions and p=0.31 for provisional opinions). Mean time to reach a decision showed a non-significant reduction (ANOVA, p=0.22) from 33.3 to 32.0 days in the ethics officer RECs compared with the comparator RECs (32.6 to 32.9 days). The survey (30% response rate) indicated applicant satisfaction and also suggested that ethics officer support might be more useful before submission. Ethics officers were successful in identifying many issues with applications, but the intervention did not function exactly as designed: in 31% of applicants, no contact between the applicants and the ethics officer took place before REC review. Limitations This study was a non-randomised comparison cohort study. Some data were missing. Conclusions An ethics officer intervention, as designed and implemented in this study, did not increase the proportion of applications to RECs that were approved on first review and did not reduce the time to a committee decision. PMID:27580832

  3. Ethics of animal research in human disease remediation, its institutional teaching; and alternatives to animal experimentation.

    Science.gov (United States)

    Cheluvappa, Rajkumar; Scowen, Paul; Eri, Rajaraman

    2017-08-01

    Animals have been used in research and teaching for a long time. However, clear ethical guidelines and pertinent legislation were instated only in the past few decades, even in developed countries with Judeo-Christian ethical roots. We compactly cover the basics of animal research ethics, ethical reviewing and compliance guidelines for animal experimentation across the developed world, "our" fundamentals of institutional animal research ethics teaching, and emerging alternatives to animal research. This treatise was meticulously constructed for scientists interested/involved in animal research. Herein, we discuss key animal ethics principles - Replacement/Reduction/Refinement. Despite similar undergirding principles across developed countries, ethical reviewing and compliance guidelines for animal experimentation vary. The chronology and evolution of mandatory institutional ethical reviewing of animal experimentation (in its pioneering nations) are summarised. This is followed by a concise rendition of the fundamentals of teaching animal research ethics in institutions. With the advent of newer methodologies in human cell-culturing, novel/emerging methods aim to minimise, if not avoid the usage of animals in experimentation. Relevant to this, we discuss key extant/emerging alternatives to animal use in research; including organs on chips, human-derived three-dimensional tissue models, human blood derivates, microdosing, and computer modelling of various hues. © 2017 The Authors. Pharmacology Research & Perspectives published by John Wiley & Sons Ltd, British Pharmacological Society and American Society for Pharmacology and Experimental Therapeutics.

  4. Experts, meta-expertise and mediators. Ethical oversight of research in multidisciplinary scenarios

    Directory of Open Access Journals (Sweden)

    Wilfredo Betancourt Mosquera

    2016-07-01

    Full Text Available Based on a case study drawn from the written records of a Colombian Research Ethics Committee (rec, this article discusses the impact that its multidisciplinary nature has on its decision-making processes. recs are analyzed as “boundary organizations” in which experts from different disciplines can meet. Additionally, recs are viewed as contemporary socio-epistemic arenas in which research ethics are produced. It was found that multiple expertise is often seen by some of its members as an «anomaly» which impedes ordinary work and ideally should be avoided. During the assessment of research projects the rec sought to manage this task through homogenizing decision-making processes in accordance with the expertise of some of its members, avoiding the convergence of «communities of practice.» Furthermore, the members of the rec frequently base their decisions either on their own ethical judgments, or by mirroring those of more qualified reviewers. This dynamic is largely a consequence of «meta-expertise,» that is to say, rec members’ ability or legitimacy to judge expert knowledge which they do not possess. It is concluded that researchers have wide possibilities to interpret and define the ethical dimension of their work. Within local practices of ethical reviews, researchers act as «interactional» actors able to assess and communicate recs about their own ethics. Paradoxically, despite their character as a public setting for multidisciplinary dialogue, recs end up being spaces in which the professional esotericism of disciplinary communities is reaffirmed and the socio-epistemic authority of experts reinforced.

  5. Neurodevelopment, GABA System Dysfunction, and Schizophrenia

    OpenAIRE

    Schmidt, Martin J; Mirnics, Karoly

    2014-01-01

    The origins of schizophrenia have eluded clinicians and researchers since Kraepelin and Bleuler began documenting their findings. However, large clinical research efforts in recent decades have identified numerous genetic and environmental risk factors for schizophrenia. The combined data strongly support the neurodevelopmental hypothesis of schizophrenia and underscore the importance of the common converging effects of diverse insults. In this review, we discuss the evidence that genetic and...

  6. Social and ethical dimensions of nanoscale science and engineering research.

    Science.gov (United States)

    Sweeney, Aldrin E

    2006-07-01

    Continuing advances in human ability to manipulate matter at the atomic and molecular levels (i.e. nanoscale science and engineering) offer many previously unimagined possibilities for scientific discovery and technological development. Paralleling these advances in the various science and engineering sub-disciplines is the increasing realization that a number of associated social, ethical, environmental, economic and legal dimensions also need to be explored. An important component of such exploration entails the identification and analysis of the ways in which current and prospective researchers in these fields conceptualize these dimensions of their work. Within the context of a National Science Foundation funded Research Experiences for Undergraduates (REU) program in nanomaterials processing and characterization at the University of Central Florida (2002-2004), here I present for discussion (i) details of a "nanotechnology ethics" seminar series developed specifically for students participating in the program, and (ii) an analysis of students' and participating research faculty's perspectives concerning social and ethical issues associated with nanotechnology research. I conclude with a brief discussion of implications presented by these issues for general scientific literacy and public science education policy.

  7. Instrumental and ethical aspects of experimental research with animal models

    Directory of Open Access Journals (Sweden)

    Mirian Watanabe

    2014-02-01

    Full Text Available Experimental animal models offer possibilities of physiology knowledge, pathogenesis of disease and action of drugs that are directly related to quality nursing care. This integrative review describes the current state of the instrumental and ethical aspects of experimental research with animal models, including the main recommendations of ethics committees that focus on animal welfare and raises questions about the impact of their findings in nursing care. Data show that, in Brazil, the progress in ethics for the use of animals for scientific purposes was consolidated with Law No. 11.794/2008 establishing ethical procedures, attending health, genetic and experimental parameters. The application of ethics in handling of animals for scientific and educational purposes and obtaining consistent and quality data brings unquestionable contributions to the nurse, as they offer subsidies to relate pathophysiological mechanisms and the clinical aspect on the patient.

  8. Broadening Student Perspectives on Marketing Research Ethics: Development and Applications of a Teaching Module

    Science.gov (United States)

    Handlin, Amy

    2012-01-01

    This paper describes an ethics module developed by the author to engage marketing research students during the fall semester, when they are bombarded by political polls. The module matches ethically questionable polling practices to similarly troubling practices in marketing research. The goals are to show that ethical principles are not topic- or…

  9. Ethical Issues and Best Practice Considerations for Internet Research

    Science.gov (United States)

    Colvin, Jan; Lanigan, Jane

    2005-01-01

    With rapidly increasing public use of the Internet and advances in Web technologies, family and consumer sciences researchers have the opportunity to conduct Internet-based research. However, online research raises critical ethical issues concerning human subjects that have an impact on research practices. This article provides a review of the…

  10. Ethical issues in brain-computer interface research, development, and dissemination.

    Science.gov (United States)

    Vlek, Rutger J; Steines, David; Szibbo, Dyana; Kübler, Andrea; Schneider, Mary-Jane; Haselager, Pim; Nijboer, Femke

    2012-06-01

    The steadily growing field of brain-computer interfacing (BCI) may develop useful technologies, with a potential impact not only on individuals, but also on society as a whole. At the same time, the development of BCI presents significant ethical and legal challenges. In a workshop during the 4th International BCI meeting (Asilomar, California, 2010), six panel members from various BCI laboratories and companies set out to identify and disentangle ethical issues related to BCI use in four case scenarios, which were inspired by current experiences in BCI laboratories. Results of the discussion are reported in this article, touching on topics such as the representation of persons with communication impairments, dealing with technological complexity and moral responsibility in multidisciplinary teams, and managing expectations, ranging from an individual user to the general public. Furthermore, we illustrate that where treatment and research interests conflict, ethical concerns arise. On the basis of the four case scenarios, we discuss salient, practical ethical issues that may confront any member of a typical multidisciplinary BCI team. We encourage the BCI and rehabilitation communities to engage in a dialogue, and to further identify and address pressing ethical issues as they occur in the practice of BCI research and its commercial applications.

  11. Ethical Guidelines for Computer Security Researchers: "Be Reasonable"

    Science.gov (United States)

    Sassaman, Len

    For most of its existence, the field of computer science has been lucky enough to avoid ethical dilemmas by virtue of its relatively benign nature. The subdisciplines of programming methodology research, microprocessor design, and so forth have little room for the greater questions of human harm. Other, more recently developed sub-disciplines, such as data mining, social network analysis, behavioral profiling, and general computer security, however, open the door to abuse of users by practitioners and researchers. It is therefore the duty of the men and women who chart the course of these fields to set rules for themselves regarding what sorts of actions on their part are to be considered acceptable and what should be avoided or handled with caution out of ethical concerns. This paper deals solely with the issues faced by computer security researchers, be they vulnerability analysts, privacy system designers, malware experts, or reverse engineers.

  12. Methodologic and ethical ramifications of sex and gender differences in public health research.

    Science.gov (United States)

    Lawrence, Kitty; Rieder, Anita

    2007-01-01

    Experience and investigative studies have shown that inequalities still exist between the sexes as well as in how public health policies and strategies approach the needs of the sexes. Sufficient attention has not been given to gender in public health research. Gender-based differences and similarities need to be promoted, and more structured guidelines are needed to build gender into public health research models. The aim of this review was to investigate and discuss public health research and to answer several related questions on gender biases, ethics and methodologies, and the establishment of guidelines. Using the search terms public health research and gender , or ethics , gender , and public health, a literature search was conducted predominately with, but not limited to, the PubMed database. English- or German-language articles were identified that examined the current status of gender in public health research as well as any relevant ethical guidelines. A review of the current literature showed that much work has been undertaken to promote the inclusion of gender in health research. However, deficiencies in the extent of gender-oriented research have been found in a number of key areas, including ethics committees and public health research methodology. Women were found to be underrepresented in ethics committees, which lack clear guidance, particularly in the European Union, to ensure the inclusion of gender issues in public health research. Data are often not sex disaggregated, and information on gender and social circumstances are frequently lacking. Furthermore, some methodologies, such as those used in the field of occupational health, underestimate men's or women's burden of disease. Recommendations include establishing guidelines for researchers on how to incorporate gender in health research, ensuring that the composition of ethics committees is more representative of society, and recommending that data collection systems or bodies ensure that data

  13. Correlation Between Insight and Capacity to Consent to Research in Subjects With Bipolar Disorder Type I and Schizophrenia.

    Science.gov (United States)

    López-Jaramillo, Carlos; Tobler, Chantal Aristizábal; Gómez, Constanza Ovalle; Triana, Jaime Escobar

    2016-01-01

    Schizophrenia and bipolar disorder type I (BD-I) can affect patient autonomy and capacity to consent to participate in research. Other variables associated with the autonomy of patients must be explored in order to improve the quality of the currently available tools. To evaluate the relationship between insight and the capacity to consent to participate in research in patients with BD-I and schizophrenia. A cross-sectional and longitudinal study was conducted with 120 subjects (40 subjects with schizophrenia, 40 with BD-I, and 40 healthy controls). The tools used were the Scale Assessment Insight-Expanded (SAI-E) and the MacArthur Competence Assessment Tool-Treatment (MacCAT-CR), which was first adapted culturally, and its validity and reliability assessed. The results obtained on each scale were compared and the association between them were evaluated. There is a direct correlation between the capacity to consent to research, measured using the MacCAT-CR tool, and the degree of insight, measured using the SAI-E scale, with an effect size of 1.3 for BD-I and 2.03 for schizophrenia. The results suggest that there is a correlation between the degree of insight and the capacity to consent to research in subjects with schizophrenia and BD-I. Insight should therefore be included as a relevant variable to assess the capacity to consent, and future studies should include it when researching on or designing new tools which aim at a greater respect of patient autonomy. Copyright © 2016 Asociación Colombiana de Psiquiatría. Publicado por Elsevier España. All rights reserved.

  14. 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.

  15. Ethics and methods for biological rhythm research on animals and human beings.

    Science.gov (United States)

    Portaluppi, Francesco; Smolensky, Michael H; Touitou, Yvan

    2010-10-01

    This article updates the ethical standards and methods for the conduct of high-quality animal and human biological rhythm research, which should be especially useful for new investigators of the rhythms of life. The editors of Chronobiology International adhere to and endorse the Code of Conduct and Best Practice Guidelines of the Committee On Publication Ethics (COPE), which encourages communication of such updates at regular intervals in the journal. The journal accepts papers representing original work, no part of which was previously submitted for publication elsewhere, except as brief abstracts, as well as in-depth reviews. The majority of research papers published in Chronobiology International entails animal and human investigations. The editors and readers of the journal expect authors of submitted manuscripts to have made an important contribution to the research of biological rhythms and related phenomena using ethical methods/procedures and unbiased, accurate, and honest reporting of findings. Authors of scientific papers are required to declare all potential conflicts of interest. The journal and its editors endorse compliance of investigators to the Guide for the Care and Use of Laboratory Animals of the Institute for Laboratory Animal Research of the National Research Council, relating to the conduct of ethical research on laboratory and other animals, and the principles of the Declaration of Helsinki of the World Medical Association, relating to the conduct of ethical research on human beings. The peer review of manuscripts by Chronobiology International thus includes judgment as to whether or not the protocols and methods conform to ethical standards. Authors are expected to show mastery of the basic methods and procedures of biological rhythm research and proper statistical assessment of data, including the appropriate application of time series data analyses, as briefly reviewed in this article. The journal editors strive to consistently achieve

  16. Tiny tweaks, big changes: An alternative strategy to empower ethical culture of human research in anesthesia (A Taiwan Acta Anesthesiologica Taiwanica-Ethics Review Task Force Report).

    Science.gov (United States)

    Luk, Hsiang-Ning; Ennever, John F; Day, Yuan-Ji; Wong, Chih-Shung; Sun, Wei-Zen

    2015-03-01

    For this guidance article, the Ethics Review Task Force (ERTF) of the Journal reviewed and discussed the ethics issues related to publication of human research in the field of anesthesia. ERTF first introduced international ethics principles and minimal requirements of reporting of ethics practices, followed by discussing the universal problems of publication ethics. ERTF then compared the accountability and methodology of several medical journals in assuring authors' ethics compliance. Using the Taiwan Institutional Review Board system as an example, ERTF expressed the importance of institutional review board registration and accreditation to assure human participant protection. ERTF presented four major human research misconducts in the field of anesthesia in recent years. ERTF finally proposed a flow-chart to guide journal peer reviewers and editors in ethics review during the editorial process in publishing. Examples of template languages applied in the Ethics statement section in the manuscript are expected to strengthen the ethics compliance of the authors and to set an ethical culture for all the stakeholders involved in human research. Copyright © 2015. Published by Elsevier B.V.

  17. Ethical considerations in sexual health research: A narrative review

    Directory of Open Access Journals (Sweden)

    Maryam Shirmohammadi

    2018-01-01

    Full Text Available Background: There is an assumption that sexual health research has great influence on the quality of human life through elevating sexual health standards, and their results will eliminate the burden of sexual health challenges on family relationships. The aim of this study was to review ethical considerations in sexual health research. Materials and Methods: This narrative review was conducted between January 1990 and December 2017 based on the five-step approach of York University. The keywords used to search for the studies included ethical issues, research, sexual health, reproductive health, and sensitive topics. The language of the literatures was English and the search process was performed on PubMed, Elsevier, Ovid, Springer, Google Scholar, ResearchGate, SAGE Publishing, ProQuest, WHO website, Kinsey Confidential, and Worldsexology. Results: After assessing the quality and eligibility of 94 articles, 13 were selected. The results of the present study showed that the most important ethical considerations were protecting the confidentiality and privacy of participants, obtaining informed consent, and paying attention to vulnerable people. Conclusions: The review of literature exhibited several considerations that sexual health researchers are faced with. In order to manage these considerations, the researcher should have sufficient understanding of them. The important matter is that strategies to manage these challenges should be completely rational and practical according to each context. These strategies can also be applied in other societies with great similarities in their context.

  18. Confronting Ethical and Regulatory Challenges of Emergency Care Research With Conscious Patients.

    Science.gov (United States)

    Dickert, Neal W; Brown, Jeremy; Cairns, Charles B; Eaves-Leanos, Aaliyah; Goldkind, Sara F; Kim, Scott Y H; Nichol, Graham; O'Conor, Katie J; Scott, Jane D; Sinert, Richard; Wendler, David; Wright, David W; Silbergleit, Robert

    2016-04-01

    Barriers to informed consent are ubiquitous in the conduct of emergency care research across a wide range of conditions and clinical contexts. They are largely unavoidable; can be related to time constraints, physical symptoms, emotional stress, and cognitive impairment; and affect patients and surrogates. US regulations permit an exception from informed consent for certain clinical trials in emergency settings, but these regulations have generally been used to facilitate trials in which patients are unconscious and no surrogate is available. Most emergency care research, however, involves conscious patients, and surrogates are often available. Unfortunately, there is neither clear regulatory guidance nor established ethical standards in regard to consent in these settings. In this report-the result of a workshop convened by the National Institutes of Health Office of Emergency Care Research and Department of Bioethics to address ethical challenges in emergency care research-we clarify potential gaps in ethical understanding and federal regulations about research in emergency care in which limited involvement of patients or surrogates in enrollment decisions is possible. We propose a spectrum of approaches directed toward realistic ethical goals and a research and policy agenda for addressing these issues to facilitate clinical research necessary to improve emergency care. Copyright © 2015 American College of Emergency Physicians. Published by Elsevier Inc. All rights reserved.

  19. Ethics education in research involving human beings in undergraduate medicine curriculum in Brazil.

    Science.gov (United States)

    Novaes, Maria Rita Garbi; Guilhem, Dirce; Barragan, Elena; Mennin, Stewart

    2013-12-01

    The Brazilian national curriculum guidelines for undergraduate medicine courses inspired and influenced the groundwork for knowledge acquisition, skills development and the perception of ethical values in the context of professional conduct. The evaluation of ethics education in research involving human beings in undergraduate medicine curriculum in Brazil, both in courses with active learning processes and in those with traditional lecture learning methodologies. Curricula and teaching projects of 175 Brazilian medical schools were analyzed using a retrospective historical and descriptive exploratory cohort study. Thirty one medical schools were excluded from the study because of incomplete information or a refusal to participate. Active research for information from institutional sites and documents was guided by terms based on 69 DeCS/MeSH descriptors. Curriculum information was correlated with educational models of learning such as active learning methodologies, tutorial discussions with integrated curriculum into core modules, and traditional lecture learning methodologies for large classes organized by disciplines and reviewed by occurrence frequency of ethical themes and average hourly load per semester. Ninety-five medical schools used traditional learning methodologies. The ten most frequent ethical themes were: 1--ethics in research (26); 2--ethical procedures and advanced technology (46); 3--ethic-professional conduct (413). Over 80% of schools using active learning methodologies had between 50 and 100 hours of scheduled curriculum time devoted to ethical themes whereas more than 60% of traditional learning methodology schools devoted less than 50 hours in curriculum time to ethical themes. The data indicates that medical schools that employ more active learning methodologies provide more attention and time to ethical themes than schools with traditional discipline-based methodologies. Given the importance of ethical issues in contemporary medical

  20. 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.

  1. Developing Ethics and Standards in Action Research

    Directory of Open Access Journals (Sweden)

    Ben Boog

    2008-12-01

    Full Text Available In a globalizing world, what role can social science research – particularly action research – play in order to address the risks of exclusion, poverty, social and physical insecurity and environmental deprivation? More specifically, how can this type of research be conducted in a participatory, responsible, transparent and scientific way? In other words: what about the ethics and standards in action research? This was the main focus of the World Congress on Action Research and Action Learning (August 2006 organized by the University of Groningen and the Higher Education Group of the Northern Netherlands. We begin by discussing the core characteristics of action research with reference to theory and practice. Reflection and action are key constituents of the process through the enactment of action research. The middle section draws upon the research findings presented at the congress and published in a book [B. Boog, J. Preece, M. Slagter and J. Zeelen (Eds. (2008 Towards Quality Improvement of Action Research. Developing Ethics and Standards, Rotterdam/Taipei: Sense Publishers]. Citing authors who contributed chapters to the book mentioned above, we analyze four important subthemes: ‘participation, power and rapport’; ‘quality of research and quality management’; ‘learning to solve your own problems in complex responsive social systems, and ‘heuristics (rules of thumb for action research practice’. Finally, we comment on possible quality improvements for action research. Our remarks relate to the problems of implementing the concept of participation, the ambition of action research to contribute to both knowledge production and social change and the need for systematic reconstruction (scientific validation of action research.

  2. Variations in the Incidence of Schizophrenia: Data Versus Dogma

    Science.gov (United States)

    McGrath, John J

    2006-01-01

    The schizophrenia research community has shared a belief that the incidence of schizophrenia shows little variation. This belief is related to the dogma that schizophrenia affects all individuals equally, regardless of sex, race, or nationality. However, there is now robust evidence that the incidence of schizophrenia is characterized by substantial variability. There is prominent variation in the incidence of schizophrenia between sites. The incidence of schizophrenia is significantly higher in males than in females (male:female ratio = 1.4). Migrants and those living in urban areas have a higher incidence of schizophrenia. The incidence of schizophrenia has fluctuations across time. In addition, the prevalence of schizophrenia is also characterized by prominent variation. The realization that schizophrenia is characterized by rich and informative gradients will serve as a catalyst for future research. PMID:16135560

  3. The Impact of Ethics Review on a Research-Led University Curriculum: Results of a Qualitative Study in Australia.

    Science.gov (United States)

    Wynn, L L

    2016-04-01

    In the human sciences, a student research-centered pedagogy is constrained by institutional ethics review, yet there is little research on the impact of ethics review on research-led teaching. This article documents a range of ways that Australian universities are responding to ethics review of undergraduate human research. Forty teachers and administrators were interviewed at 14 universities using purposive sampling to document the range of ways teachers are avoiding ethics review or incorporating it into their curriculum. Some reported halting undergraduate research or evading ethics review, regarding it as meaningless bureaucracy divorced from actual ethical thinking. Those who incorporated ethics review into student research did so by collaborating with administrators. Institutions can facilitate research-led teaching by designing dedicated forms and decentralized review procedures for student research. © The Author(s) 2016.

  4. Ethical issues in Alzheimer's disease research involving human subjects.

    Science.gov (United States)

    Davis, Dena S

    2017-12-01

    As we aggressively pursue research to cure and prevent Alzheimer's disease, we encounter important ethical challenges. None of these challenges, if handled thoughtfully, would pose insurmountable barriers to research. But if they are ignored, they could slow the research process, alienate potential study subjects and do damage to research recruits and others. These challenges are (1) the necessity of very large cohorts of research subjects, recruited for lengthy studies, probably ending only in the subjects' death; (2) the creation of cohorts of 'study ready' volunteers, many of whom will be competent to consent at the beginning of the process, but move into cognitive impairment later; (3) reliance on adaptive trial design, creating challenges for informed consent, equipoise and justice; (4) the use of biomarkers and predictive tests that describe risk rather than certainty, and that can threaten participants' welfare if the information is obtained by insurance companies or long-term care providers; (5) the use of study partners that creates unique risks of harm to the relationship of subject and study partner. We need greater attention, at all levels, to these complex ethical issues. Work on these issues should be included in research plans, from the federal to the local, and should be supported through NIH in the same way that it supported work on the ethical, legal and social implications of genetic research. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

  5. Animal models in biological and biomedical research - experimental and ethical concerns.

    Science.gov (United States)

    Andersen, Monica L; Winter, Lucile M F

    2017-09-04

    Animal models have been used in experimental research to increase human knowledge and contribute to finding solutions to biological and biomedical questions. However, increased concern for the welfare of the animals used, and a growing awareness of the concept of animal rights, has brought a greater focus on the related ethical issues. In this review, we intend to give examples on how animals are used in the health research related to some major health problems in Brazil, as well as to stimulate discussion about the application of ethics in the use of animals in research and education, highlighting the role of National Council for the Control of Animal Experimentation (Conselho Nacional de Controle de Experimentação Animal - CONCEA) in these areas. In 2008, Brazil emerged into a new era of animal research regulation, with the promulgation of Law 11794, previously known as the Arouca Law, resulting in an increased focus, and rapid learning experience, on questions related to all aspects of animal experimentation. The law reinforces the idea that animal experiments must be based on ethical considerations and integrity-based assumptions, and provides a regulatory framework to achieve this. This review describes the health research involving animals and the current Brazilian framework for regulating laboratory animal science, and hopes to help to improve the awareness of the scientific community of these ethical and legal rules.

  6. [Basic symptoms in schizophrenia, their clinical study and relevance in research].

    Science.gov (United States)

    Miret, Salvador; Fatjó-Vilas, Mar; Peralta, Víctor; Fañanás, Lourdes

    2016-01-01

    Basic symptoms consist of subtle sub-clinical disturbances subjectively experienced by schizophrenia patients. These are mainly related to drive, affect, thinking and language, perception, memory, motor action, central vegetative functions, control of cognitive processes, and stress tolerance. Initially described by Huber, from a phenomenological approach, basic symptoms are part of the earliest features of schizophrenia, and they can evolve along the course of the disorder. Their assessment during the prodromal phase of the disease (together with ultra-high risk criteria) is one of the 2 main approaches that allow the definition of states of clinical risk for the development of psychosis. The present review provides an updated view of the concept of basic symptoms, highlighting its potential value in establishing neurobiological correlates of interest in aetiopathogenic research. Copyright © 2015 SEP y SEPB. Published by Elsevier España. All rights reserved.

  7. Ethics and epidemiological research | Cullinan | Malawi Medical ...

    African Journals Online (AJOL)

    Journal Home > Vol 8, No 2 (1992) >. Log in or Register to get access to full text downloads. Username, Password, Remember me, or Register. Ethics and epidemiological research. T Cullinan. Abstract. No Abstract. Full Text: EMAIL FREE FULL TEXT EMAIL FREE FULL TEXT · DOWNLOAD FULL TEXT DOWNLOAD FULL ...

  8. Sex Work Research: Methodological and Ethical Challenges

    Science.gov (United States)

    Shaver, Frances M.

    2005-01-01

    The challenges involved in the design of ethical, nonexploitative research projects with sex workers or any other marginalized population are significant. First, the size and boundaries of the population are unknown, making it extremely difficult to get a representative sample. Second, because membership in hidden populations often involves…

  9. Using Social Media as a Research Recruitment Tool: Ethical Issues and Recommendations.

    Science.gov (United States)

    Gelinas, Luke; Pierce, Robin; Winkler, Sabune; Cohen, I Glenn; Lynch, Holly Fernandez; Bierer, Barbara E

    2017-03-01

    The use of social media as a recruitment tool for research with humans is increasing, and likely to continue to grow. Despite this, to date there has been no specific regulatory guidance and there has been little in the bioethics literature to guide investigators and institutional review boards (IRBs) faced with navigating the ethical issues such use raises. We begin to fill this gap by first defending a nonexceptionalist methodology for assessing social media recruitment; second, examining respect for privacy and investigator transparency as key norms governing social media recruitment; and, finally, analyzing three relatively novel aspects of social media recruitment: (i) the ethical significance of compliance with website "terms of use"; (ii) the ethics of recruiting from the online networks of research participants; and (iii) the ethical implications of online communication from and between participants. Two checklists aimed at guiding investigators and IRBs through the ethical issues are included as appendices.

  10. Detecting, preventing, and responding to "fraudsters" in internet research: ethics and tradeoffs.

    Science.gov (United States)

    Teitcher, Jennifer E F; Bockting, Walter O; Bauermeister, José A; Hoefer, Chris J; Miner, Michael H; Klitzman, Robert L

    2015-01-01

    Internet-based health research is increasing, and often offers financial incentives but fraudulent behavior by participants can result. Specifically, eligible or ineligible individuals may enter the study multiple times and receive undeserved financial compensation. We review past experiences and approaches to this problem and propose several new strategies. Researchers can detect and prevent Internet research fraud in four broad ways: (1) through the questionnaire/instrument (e.g., including certain questions in survey; and software for administering survey); (2) through participants' non-questionnaire data and seeking external validation (e.g., checking data for same email addresses, usernames, passwords, and/or fake addresses or phone numbers; (3) through computer information, (e.g., IP addresses and cookies), and 4) through study design (e.g., avoid lump sum compensation and interviewing participants). These approaches each have pros and cons, and raise ethical, legal, and logistical questions, given that ethical tensions can emerge between preserving the integrity of research vs. protecting the privacy and confidentiality of study respondents. While past discussions concerning the ethics of online research have tended to focus on the participants' ability to trust the researchers, needs now arise to examine researchers' abilities to trust the participants. This analysis has several critical implications for future practice, policy, and research. © 2015 American Society of Law, Medicine & Ethics, Inc.

  11. The vulnerability to schizophrenia mainstream research paradigms and phenomenological directions.

    Science.gov (United States)

    Stanghellini, Giovanni; Fusar-Poli, Paolo

    2012-01-01

    Early psychopathological attempts to characterize the vulnerability to schizophrenia were based on the phenomenological method. From the beginning, phenomenologically-oriented psychopathologists have searched the basic vulnerability underlying schizophrenic phenomena in two main domains: depersonalization and derealisation/desocialization. Schizophrenic persons undergo a special kind of depersonalisation: the living body becomes a functioning body, a thing-like mechanism in which feelings, perceptions, and actions take place as if they happened in an outer space. They also endure a special kind of derealisation/de-socialization: the interpersonal scene becomes like a theatre stage, pervaded with a sense of unreality, on which the main actor is unaware of the plot, out of touch with the role he is acting and unable to make sense of the objects he encounters and of what the other people are doing. Many years later, the mainstream research paradigms employed to investigate the vulnerability concept in schizophrenic psychosis have included genetic studies, birth cohort studies, psychosis proneness, and clinical high risk. We will review these studies and conclude with an outline of future research directions focusing on three main features of the psychopathology of early schizophrenia: anomalies of the pre-reflexive self and of the social self (intersubjectivity), and existential re-orientation.

  12. Teaching medical students to discern ethical problems in human clinical research studies.

    Science.gov (United States)

    Roberts, Laura Weiss; Warner, Teddy D; Green Hammond, Katherine A; Brody, Janet L; Kaminsky, Alexis; Roberts, Brian B

    2005-10-01

    Investigators and institutional review boards are entrusted with ensuring the conduct of ethically sound human studies. Assessing ethical aspects of research protocols is a key skill in fulfilling this duty, yet no empirically validated method exists for preparing professionals to attain this skill. The authors performed a randomized controlled educational intervention, comparing a criteria-based learning method, a clinical-research- and experience-based learning method, and a control group. All 300 medical students enrolled at the University of New Mexico School of Medicine in 2001 were invited to participate. After a single half-hour educational session, a written posttest of ability to detect ethical problems in hypothetical protocol vignettes was administered. The authors analyzed responses to ten protocol vignettes that had been evaluated independently by experts. For each vignette, a global assessment of the perceived significance of ethical problems and the identification of specific ethical problems were evaluated. Eighty-three medical students (27%) volunteered: 50 (60%) were women and 55 (66%) were first- and second-year students. On global assessments, the criteria-focused group perceived ethical problems as more significant than did the other two groups (p evaluation skills. This work supports the potential value of empirically derived methods for preparing professionals to discern ethical aspects of human studies.

  13. Paper use in research ethics applications and study conduct.

    Science.gov (United States)

    Chakladar, Abhijoy; Eckstein, Sue; White, Stuart M

    2011-02-01

    Application for Research Ethics Committee (REC) approval and the conduct of medical research is paper intensive. This retrospective study examined all applications to a single REC in the south of England over one year. It estimated the mass of paper used, comparing the proportional paper consumption of different trial types and during different stages of the research process, quantifying the consumption in terms of carbon dioxide emissions. In 2009, 68 trials were submitted to the REC. Total paper consumption for the REC process and study conduct was 176,150 sheets of A4 paper (879 kg), equivalent to an estimated 11.5 million sheets (88 tonnes, 2100 trees) a year for the U.K.; the REC process accounted for 26.4%. REC applications and the conduct of approved trials generate considerable environmental impact through paper consumption contributing to the NHS's carbon footprint. Paper use might be reduced through the implementation of digital technologies and revised research methods, namely changing attitudes in both researchers and ethics committees.

  14. Non-adherence to pharmacological treatment in schizophrenia and schizophrenia spectrum disorders

    DEFF Research Database (Denmark)

    Ljungdalh, P. M.

    2017-01-01

    Background and objectives The primary treatment for schizophrenia and schizophrenia-spectrum disorders is antipsychotic medication. One of the many public health challenges in mental illness, is to identify contributing factors to non-adherence to pharmacological treatment. The objective...... of this study was to perform an updated systematic review of risk factors for non-adherence to pharmacological treatment in schizophrenia in a European and American context. Methods The study was a systematic literature review of studies that included at least two measurements of pharmacological adherence...... of illness, alcohol or drug abuse and unspecified younger age. Conclusions The findings in this systematic literature review are consistent with previous reviews on non-adherence and schizophrenia. It stresses the methodological challenges in psychiatric adherence research and establishes the need for more...

  15. 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…

  16. The practice of nursing research: getting ready for 'ethics' and the matter of character.

    Science.gov (United States)

    Sellman, Derek

    2016-03-01

    Few would argue with the idea that nursing research should be conducted ethically yet obtaining ethical approval is considered by many to have become unnecessarily burdensome. This brief article investigates the idea that there might be a relationship between the level of perceived burdensomeness of the research ethics application process on the one hand and the character of the nurse-researcher on the other. Given that nurses are required to be other-regarding, a nurse who undertakes research primarily for self-regarding reasons would seem to be acting in ways inconsistent with the aims of nursing as set out in nursing codes. It is suggested that the self-regarding nurse-researcher may find the ethics application process more burdensome than the other-regarding nurse-researcher who, it is further suggested, is engaged with nursing research as a practice in the technical sense in which that term has been developed by the philosopher Alasdair MacIntyre. © 2015 John Wiley & Sons Ltd.

  17. Can an ethics officer role reduce delays in research ethics approval? A mixed-method evaluation of an improvement project.

    Science.gov (United States)

    Dixon-Woods, Mary; Foy, Chris; Hayden, Charlotte; Al-Shahi Salman, Rustam; Tebbutt, Stephen; Schroter, Sara

    2016-08-31

    Frustration continues to be directed at delays in gaining approvals for undertaking health research in the UK. We aimed to evaluate the impact of an ethics officer intervention on rates of favourable opinions (approval) and provisional opinions (requiring revision and resubmission) and on the time taken to reach a final opinion by research ethics committees (RECs), to characterise how the role operated in practice, and to investigate applicants' views. Mixed-method study involving (i) a 2-group, non-randomised before-and-after intervention study of RECs assigned an ethics officer and a matched comparator group; (ii) a process evaluation involving a survey of applicants and documentary analysis. 6 RECs and 3 associated ethics officers; 18 comparator RECs; REC applicants. Rates of provisional and favourable opinions between ethics officer and comparator RECs did not show a statistically significant effect of the intervention (logistic regression, p=0.26 for favourable opinions and p=0.31 for provisional opinions). Mean time to reach a decision showed a non-significant reduction (ANOVA, p=0.22) from 33.3 to 32.0 days in the ethics officer RECs compared with the comparator RECs (32.6 to 32.9 days). The survey (30% response rate) indicated applicant satisfaction and also suggested that ethics officer support might be more useful before submission. Ethics officers were successful in identifying many issues with applications, but the intervention did not function exactly as designed: in 31% of applicants, no contact between the applicants and the ethics officer took place before REC review. This study was a non-randomised comparison cohort study. Some data were missing. An ethics officer intervention, as designed and implemented in this study, did not increase the proportion of applications to RECs that were approved on first review and did not reduce the time to a committee decision. Published by the BMJ Publishing Group Limited. For permission to use (where not

  18. Subject, function, and trend in medical ethics research: a comparative study of Chinese and non-Chinese literature using bibliometrics.

    Science.gov (United States)

    Jiang, Lanhui; Shen, Jiantong; Li, Youping; Deng, Shaolin; Wu, Taixiang; Chen, Baoqing; Xie, Zhiyi; Qin, Chaoyi; Yu, Zhiyuan; Qin, Chuan; Huang, Jin; Liu, Xuemei; Li, Yan; Jiang, Jie

    2012-05-01

    To perform a comparative quantitative and qualitative analysis of Chinese and non-Chinese medical ethics literature using systematic research and literature analysis in order to discern research trends in the area and provide baseline data as a reference for relevant decision making and further study. We retrieved articles using MeSH terms and keywords related to medical ethics in PubMed and CNKI, and then constructed a set of charts by applying word co-occurrence, The Pathfinder Networks algorithms, an included subject chart, a research field relationship chart, and strategy coordination charts. The total of number of papers retrieved from PubMed was six times that retrieved from CNKI. Outside China, medical ethics has been studied in eight fully shaped subject fields, including morals, ethical review, physician-patient relationships, clinical trials, euthanasia, ethics education, clinical ethics, and health policy. In contrast, medical ethics research in China is still confined to five subject fields: morals, physician-patient relations, medical ethics education, ethical review, and medical research. Medical ethics research outside China emphasizes the application of medical ethics to solve emerging problems in clinical and medical research. It is mainly centered on morals, ethical review, and physician-patient relations. By comparison, medical ethics research in China places greater emphasis on morals and medical education. In order to narrow this gap between China and other countries, we should broaden the research scope of medical ethics and add more applied research, such as ethical review and medical education. © 2012 Blackwell Publishing Asia Pty Ltd and Chinese Cochrane Center, West China Hospital of Sichuan University.

  19. Assessing the Public’s Views in Research Ethics Controversies: Deliberative Democracy and Bioethics as Natural Allies

    Science.gov (United States)

    Kim, Scott Y. H.; Wall, Ian F.; Stanczyk, Aimee; Vries, Raymond De

    2010-01-01

    In a Liberal Democracy, Policy Decisions regarding ethical controversies, including those in research ethics, should incorporate the opinions of its citizens. Eliciting informed and well-considered ethical opinions can be challenging. The issues may not be widely familiar and they may involve complex scientific, legal, historical, and ethical dimensions. Traditional surveys risk eliciting superficial and uninformed opinions that may be of dubious quality for policy formation. We argue that the theory and practice of deliberative democracy (DD) is especially useful in overcoming such inadequacies. We explain DD theory and practice, discuss the rationale for using DD methods in research ethics, and illustrate in depth the use of a DD method for a long-standing research ethics controversy involving research based on surrogate consent. The potential pitfalls of DD and the means of minimizing them as well as future research directions are also discussed. PMID:19919315

  20. Ethical issues when involving people newly diagnosed with dementia in research.

    Science.gov (United States)

    Holland, Suzanne; Kydd, Angela

    2015-03-01

    To discuss the methodological and ethical review challenges encountered by researchers who want to enable people with dementia to be involved in research. There has been increasing recognition of the importance of involving people with dementia in research. However, an argument has centred on the protection of these vulnerable clients versus their freedom to be involved as participants in research. People with dementia do have the right to have their experiences explored. Involving this client group in research is essential to gain a true understanding of their needs. The lead author's experience of conducting a study in which people newly diagnosed with dementia were recruited as research participants. An interpretive phenomenological approach was adopted during this qualitative study, with data collected by means of one to one interviews with people newly diagnosed with dementia. This study was completed within the set timeframe, but a large part of the work was spent gaining ethical approval. This meant that the timeframe of the study period was reduced and as a result, it was only possible to recruit three participants. However, people with dementia are perhaps one of the most vulnerable client groups and it is only right that they should not be subjected to harm. Ethical review is an important part of research. Meeting the ethical requirements of research involving people with dementia requires time and careful preparation to ensure that researchers safeguard the interests of this vulnerable client group, while also allowing the participants the opportunity to exercise their autonomy to their fullest potential. Conducting research that involves people with dementia may be time consuming, but it is only fair that this client group are afforded the freedom to be involved in research. This small time-limited study points to the need for larger pilot studies to hear from individuals what needs they have following a diagnosis of dementia.

  1. Co-design and implementation research: challenges and solutions for ethics committees.

    Science.gov (United States)

    Goodyear-Smith, Felicity; Jackson, Claire; Greenhalgh, Trisha

    2015-11-16

    Implementation science research, especially when using participatory and co-design approaches, raises unique challenges for research ethics committees. Such challenges may be poorly addressed by approval and governance mechanisms that were developed for more traditional research approaches such as randomised controlled trials. Implementation science commonly involves the partnership of researchers and stakeholders, attempting to understand and encourage uptake of completed or piloted research. A co-creation approach involves collaboration between researchers and end users from the onset, in question framing, research design and delivery, and influencing strategy, with implementation and broader dissemination strategies part of its design from gestation. A defining feature of co-creation is its emergent and adaptive nature, making detailed pre-specification of interventions and outcome measures impossible. This methodology sits oddly with ethics committee protocols that require precise pre-definition of interventions, mode of delivery, outcome measurements, and the role of study participants. But the strict (and, some would say, inflexible) requirements of ethics committees were developed for a purpose - to protect participants from harm and help ensure the rigour and transparency of studies. We propose some guiding principles to help square this circle. First, ethics committees should acknowledge and celebrate the diversity of research approaches, both formally (through training) and informally (by promoting debate and discussion); without active support, their members may not understand or value participatory designs. Second, ground rules should be established for co-design applications (e.g. how to judge when 'consultation' or 'engagement' becomes research) and communicated to committee members and stakeholders. Third, the benefits of power-sharing should be recognised and credit given to measures likely to support this important goal, especially in research with

  2. Ethics and Regulatory Challenges and Opportunities in Patient-Centered Comparative Effectiveness Research.

    Science.gov (United States)

    Sugarman, Jeremy

    2016-04-01

    The Affordable Care Act includes provisions for the conduct of large-scale, patient-centered comparative effectiveness research. Such efforts aim toward the laudable moral goal of having evidence to improve health care decision making. Nevertheless, these pragmatic clinical research efforts that typically pose minimal incremental risk and are enmeshed in routine care settings perhaps surprisingly encounter an array of ethics and regulatory challenges and opportunities for academic health centers. An emphasis on patient-centeredness forces an examination of the appropriateness of traditional methods used to protect the rights, interests, and welfare of participants. At the same time, meaningful collaboration with patients throughout the research process also necessitates ensuring that novel approaches to research (including recruitment and consent) entail necessary protections regarding such issues as privacy. As the scientific and logistical aspects of this research are being developed, substantial attention is being focused on the accompanying ethics and regulatory issues that have emerged, which should help to facilitate ethically appropriate research in a variety of contexts.

  3. The ethical tightrope: politics of intimacy and consensual method in sexuality research.

    Science.gov (United States)

    Zago, Luiz F; Holmes, Dave

    2015-06-01

    This paper seeks to analyze the construction of ethics in sexuality research in which qualitative methods are employed in the field of social sciences. Analyses are based on a bibliographic review of current discussions on research methods of queer theory and on the authors' own experiences of past research on sexuality. The article offers a theoretical perspective on the ways ethnography and in-depth interviews become methods that can rely on a consensual method and create a politics of intimacy between the researchers and research participants. The politics of intimacy may contribute to the production of a politically engaged knowledge while escaping from the moral matrix that usually governs the relationship between researchers and research participants. It is argued here that the researcher's sexed and gendered body matters for fieldwork; that the consensual method among participants may be employed in sexuality research as a fruitful tool; and that the relationships created among researchers and participants can pose a challenge to predetermined ethical guidelines in research. As a result, discussions problematize the existence of a politics of intimacy in sexuality research that is characterized by ethical relations among research participants. © 2014 John Wiley & Sons Ltd.

  4. Ethical fundamentals in human subjects research : On equipoise and human dignity

    NARCIS (Netherlands)

    van der Graaf - Verhave, R.

    2010-01-01

    In her PhD thesis Rieke van der Graaf has studied how we can ethically justify human subjects research. In particular she has studied two ethical fundamentals that play a key role in the justification process, that of equipoise and human dignity. Equipoise is often taken to mean that

  5. Ethics challenges and guidance related to research involving adolescent post-abortion care: a scoping review.

    Science.gov (United States)

    Zulu, Joseph M; Ali, Joseph; Hallez, Kristina; Kass, Nancy; Michelo, Charles; Hyder, Adnan A

    2018-05-02

    An increase in post abortion care (PAC) research with adolescents, particularly in low- and middle-income countries, has brought to attention several associated research ethics challenges. In order to better understand the ethics context of PAC research with adolescents, we conducted a scoping review of published literature. Following a systematic search of PubMed, HINARI, and Google Scholar, we analysed articles meeting inclusion criteria to determine common themes across both the ethical challenges related to PAC research with adolescents and any available guidance on the identified challenges. The literature search identified an initial 3321 records of which 14 were included in analysis following screening. Several ethical challenges stem from abortion being a controversial, sensitive, and stigmatized topic in many settings. Ethical dilemmas experienced by researchers conducting adolescent PAC research included: difficulties in convincing local health providers to permit PAC research; challenges in recruiting and seeking consent due to sensitivity of the subject; effectively protecting confidentiality; managing negative effects of interventions; creating a non-prejudicial atmosphere for research; managing emotional issues among adolescents; and dealing with uncertainty regarding the role of researchers when observing unethical health care practices. Suggested strategies for addressing some of these challenges include: using several sources to recruit study participants, using research to facilitate dialogue on abortion, briefing health workers on any observed unethical practices after data collection, fostering a comprehensive understanding of contextual norms and values, selecting staff with experience working with study populations, and avoiding collection of personal identifiers. Addressing ethical challenges that researchers face when conducting PAC research with adolescents requires guidance at the individual, institutional, community, and international

  6. An evaluation of a data linkage training workshop for research ethics committees.

    Science.gov (United States)

    Tan, Kate M; Flack, Felicity S; Bear, Natasha L; Allen, Judy A

    2015-03-04

    In Australia research projects proposing the use of linked data require approval by a Human Research Ethics Committee (HREC). A sound evaluation of the ethical issues involved requires understanding of the basic mechanics of data linkage, the associated benefits and risks, and the legal context in which it occurs. The rapidly increasing number of research projects utilising linked data in Australia has led to an urgent need for enhanced capacity of HRECs to review research applications involving this emerging research methodology. The training described in this article was designed to respond to an identified need among the data linkage units in the Australian Population Health Research Network (PHRN) and HREC members in Australia. Five one-day face to face workshops were delivered in the study period to a total of 98 participants. Participants in the workshops represented all six categories of HREC membership composition listed in the National Health and Medical Research Centres' (NHMRC) National Statement on Ethical Conduct in Human Research. Participants were assessed at three time points, prior to the training (T1), immediately after the training (T2) and 8 to 17 months after the training (T3). Ninety participants completed the pre and post questionnaires; 58 of them completed the deferred questionnaire. Participants reported significant improvements in levels of knowledge, understanding and skills in each of the eight areas evaluated. The training was beneficial for those with prior experience in the area of ethics and data linkage as well as those with no prior exposure. Our preliminary work in this area demonstrates that the provision of intensive face to face ethics training in data linkage is feasible and has a significant impact on participant's confidence in reviewing HREC applications.

  7. Nurse leaders' perceptions of the ethical recruitment of study subjects in clinical research.

    Science.gov (United States)

    Nurmi, Sanna-Maria; Pietilä, Anna-Maija; Kangasniemi, Mari; Halkoaho, Arja

    2015-11-01

    The aim of this study was to describe nurse leaders' perceptions of ethical recruitment in clinical research. Nurse leaders are expected to get involved in clinical research, but there are few studies that focus on their role, particularly the ethical issues. Qualitative data were collected from ten nurse leaders using thematic one-to-one interviews and analysed with content analysis. Nurse leaders considered clinical research at their workplace in relation to the key issues that enabled ethical recruitment of study subjects in clinical research. These were: early information and collaboration for incorporating clinical research in everyday work, an opportune and peaceful recruitment moment and positive research culture. Getting involved in clinical research is part of the nurse leader's professional responsibility in current health care. They have an essential role to play in ensuring that recruitment is ethical and that the dignity of study subjects is maintained. The duty of nurse leaders is to maintain good contact with other collaborators and to ensure good conditions for implementing clinical research at their site. This requires a comprehensive understanding of the overall situation on their wards. Implementing clinical research requires careful planning, together with educating, supporting and motivating nursing staff. © 2014 John Wiley & Sons Ltd.

  8. Emotion in Schizophrenia: Where Feeling Meets Thinking.

    Science.gov (United States)

    Kring, Ann M; Caponigro, Janelle M

    2010-08-01

    Our understanding of the nature of emotional difficulties in schizophrenia has been greatly enhanced by translational research over the past two decades. By incorporating methods and theories from affective science, researchers have been able to discover that people with schizophrenia exhibit very few outward displays of emotion but report experiencing strong feelings in the presence of emotionally evocative stimuli or events. Recent behavioral, psychophysiological, and brain imaging research has pointed to the importance of considering the time course of emotion in schizophrenia. This work has shown that people with schizophrenia have the ability to experience emotion in the moment; however, they appear to have difficulties when anticipating future pleasurable experiences, and this perhaps affects their motivation to have such experiences. While advancements in our understanding of emotional experience and expression in individuals with schizophrenia have been made, these developments have led to a new collection of research questions directed at understanding the time course of emotion in schizophrenia, including the role of memory and anticipation in motivated behavior, translating laboratory findings to the development of new assessment tools and new treatments targeting emotional impairments in people with this disorder.

  9. Visual masking & schizophrenia

    Directory of Open Access Journals (Sweden)

    Michael H. Herzog

    2015-06-01

    Full Text Available Visual masking is a frequently used tool in schizophrenia research. Visual masking has a very high sensitivity and specificity and masking paradigms have been proven to be endophenotypes. Whereas masking is a powerful technique to study schizophrenia, the underlying mechanisms are discussed controversially. For example, for more than 25 years, masking deficits of schizophrenia patients were mainly attributed to a deficient magno-cellular system (M-system. Here, we show that there is very little evidence that masking deficits are magno-cellular deficits. We will discuss the magno-cellular and other approaches in detail and highlight their pros and cons.

  10. Ethical issues in HIV prevention research with people who inject drugs.

    Science.gov (United States)

    Sugarman, Jeremy; Rose, Scott M; Metzger, David

    2014-04-01

    Injection drug use continues to significantly contribute to new infections with HIV. Moreover, conducting HIV prevention research with people who inject drugs (PWIDs) can be complicated for an array of practical, social, legal, and ethical reasons. It is critical that these research efforts are sensitive to the particular vulnerabilities associated with injection drug use as well as those related to being at risk of acquiring HIV so as to minimize harm to participants in research. To describe how we addressed some of these ethical challenges during the course of a large-scale multinational randomized HIV prevention trial involving PWIDs, which was successfully completed. The ethical issues encountered during the life cycle of the trial were cataloged by the principal investigator, study coordinator, and ethicist working on the trial. Relevant study documents were then reviewed to provide pertinent details. The ethical issues unique to the trial were then described. Before implementation, the trial faced particularly complex challenges related to the vulnerability of PWIDs, where HIV seroincidence rates in the population were high and legal policies and stigma regarding injection drug use was severe. Accordingly, a rapid policy assessment was commissioned, and a series of community engagement activities were conducted. During the trial, in addition to using careful standard operating procedures regarding all aspects of trial conduct and extensive staff training, the trial standardized informed consent procedures and assessed them. Furthermore, social harms were monitored along with physical harms and adverse events. Following the decision to close the study, it was critical to develop an orderly and safe process for closing it. The issue of post-trial access to the study medication and a complex intervention also surfaced for consideration. The issues described in this article are necessarily limited to how they manifested themselves within the context of a

  11. Ethical issues and best practice in clinically based genomic research: Exeter Stakeholders Meeting Report.

    Science.gov (United States)

    Carrieri, D; Bewshea, C; Walker, G; Ahmad, T; Bowen, W; Hall, A; Kelly, S

    2016-09-27

    Current guidelines on consenting individuals to participate in genomic research are diverse. This creates problems for participants and also for researchers, particularly for clinicians who provide both clinical care and research to their patients. A group of 14 stakeholders met on 7 October 2015 in Exeter to discuss the ethical issues and the best practice arising in clinically based genomic research, with particular emphasis on the issue of returning results to study participants/patients in light of research findings affecting research and clinical practices. The group was deliberately multidisciplinary to ensure that a diversity of views was represented. This report outlines the main ethical issues, areas of best practice and principles underlying ethical clinically based genomic research discussed during the meeting. The main point emerging from the discussion is that ethical principles, rather than being formulaic, should guide researchers/clinicians to identify who the main stakeholders are to consult with for a specific project and to incorporate their voices/views strategically throughout the lifecycle of each project. We believe that the mix of principles and practical guidelines outlined in this report can contribute to current debates on how to conduct ethical clinically based genomic research. 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/

  12. Ethical, legal and practical issues of establishing an adipose stem cell bank for research.

    Science.gov (United States)

    West, C C; Murray, I R; González, Z N; Hindle, P; Hay, D C; Stewart, K J; Péault, B

    2014-06-01

    Access to human tissue is critical to medical research, however the laws and regulations surrounding gaining ethical and legal access to tissue are often poorly understood. Recently, there has been a huge increase in the interest surrounding the therapeutic application of adipose tissue, and adipose-derived stem cells. To facilitate our own research interests and possibly assist our local colleagues and collaborators, we established a Research Tissue Bank (RTB) to collect, store and distribute human adipose tissue derived cells with all the appropriate ethical approval for subsequent downstream research. Here we examine the legal, ethical and practical issues relating to the banking of adipose tissue for research in the UK, and discuss relevant international guidelines and policies. We also share our experiences of establishing an RTB including the necessary infrastructure and the submission of an application to a Research Ethics Committee (REC). Copyright © 2014 British Association of Plastic, Reconstructive and Aesthetic Surgeons. Published by Elsevier Ltd. All rights reserved.

  13. Peter Koslowski’s Ethics and Economics or Ethical Economy

    DEFF Research Database (Denmark)

    Rendtorff, Jacob Dahl

    2016-01-01

    This paper presents the concept of ethical economy (Wirtschaftsethik) and the relation between ethics and economics on the basis of the work of the German ethical economist Peter Koslowski. The concept of ethical economy includes three levels: micro, meso and macro levels; and it also deals...... with the philosophical analysis of the ethical foundations of the economy. After the discussion of these elements of the ethical economy, the paper presents some possible research topics for a research agenda about economic ethics or ethical economy....

  14. Research on Evaluation Ethics: What Have We Learned and Why Is It Important?

    Science.gov (United States)

    Morris, Michael

    1999-01-01

    Findings from empirical research on evaluation ethics indicate an apparent lack of consensus within the field concerning what constitutes an ethical issue, the frequent occurrence of problems in the later stages of evaluation projects, and the perceived ethical significance of the tendency of evaluators to be more responsive to some stakeholders…

  15. Ethical issues in research in low-income countries.

    Science.gov (United States)

    Benatar, S R; Fleischer, T E

    2007-06-01

    During the twentieth century, spectacular developments in science, technology and medical practice coupled with economic growth have transformed health care and improved the lives of many people. Despite such progress, the world today is more inequitable than it was 50 years ago: disparities in wealth and health are widening inexorably, and infectious diseases are again becoming a major scourge and pose a threat to the lives of all. Hundreds of millions of people live in degrading poverty, with little, if any, access to health care. Recognition of this context in which much research takes place should sharpen our focus on the ethical requirements for research that could improve the health of a greater proportion of the world's population--one of the most pressing moral problems of our time. The intense debate on ethical dilemmas associated with an expanding programme of clinical research in developing countries has revealed much common ground, but has also left a residuum of controversy. We suggest that contested issues could be resolved by paying greater attention to different world views on the relationship between research and clinical care and by defining policies that both progressively improve the standard of care in research and link research to improved delivery of health care in developing countries.

  16. Position statement on ethics, equipoise and research on charged particle radiation therapy.

    Science.gov (United States)

    Sheehan, Mark; Timlin, Claire; Peach, Ken; Binik, Ariella; Puthenparampil, Wilson; Lodge, Mark; Kehoe, Sean; Brada, Michael; Burnet, Neil; Clarke, Steve; Crellin, Adrian; Dunn, Michael; Fossati, Piero; Harris, Steve; Hocken, Michael; Hope, Tony; Ives, Jonathan; Kamada, Tadashi; London, Alex John; Miller, Robert; Parker, Michael; Pijls-Johannesma, Madelon; Savulescu, Julian; Short, Susan; Skene, Loane; Tsujii, Hirohiko; Tuan, Jeffrey; Weijer, Charles

    2014-08-01

    The use of charged-particle radiation therapy (CPRT) is an increasingly important development in the treatment of cancer. One of the most pressing controversies about the use of this technology is whether randomised controlled trials are required before this form of treatment can be considered to be the treatment of choice for a wide range of indications. Equipoise is the key ethical concept in determining which research studies are justified. However, there is a good deal of disagreement about how this concept is best understood and applied in the specific case of CPRT. This report is a position statement on these controversies that arises out of a workshop held at Wolfson College, Oxford in August 2011. The workshop brought together international leaders in the relevant fields (radiation oncology, medical physics, radiobiology, research ethics and methodology), including proponents on both sides of the debate, in order to make significant progress on the ethical issues associated with CPRT research. This position statement provides an ethical platform for future research and should enable further work to be done in developing international coordinated programmes of research. 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.

  17. ENVRI PLUS project: Developing an ethical framework for Environmental and Earth System Research Infrastructures

    Science.gov (United States)

    Peppoloni, Silvia; Di Capua, Giuseppe; Haslinger, Florian

    2016-04-01

    ENVRI PLUS is a Horizon 2020 project bringing together Environmental and Earth System Research Infrastructures (RIs), projects and networks with technical specialist partners to create a more coherent, interdisciplinary and interoperable cluster of Environmental Research Infrastructures across Europe (http://www.envriplus.eu/). One theme of the project deals with the societal relevance and understanding, and within that theme an entire work-package (WP) aims at developing an ethical framework for RIs. Objectives of this WP are: • increase the awareness of both the scientists and the public on the importance of ethical aspects in Earth sciences; • establish a shared ethical framework of reference, to be adopted by RIs governing bodies; • increase the awareness of RIs management and operational levels and of the individual involved scientists on their social role in conducting research activities and research work environment; • assess the ethical and social aspects related to the results achieved and deliverables released within the project. The ongoing activities include: • reviewing the state of art on ethical issues useful for the goals of the project (collection and analysis of materials already existing within scientific organizations, institutions all over the world); • the creation of a questionnaire, through which to investigate how each RI participating in ENVRI PLUS faces ethical issues in relation to its activities, and so to understand the level of perception that researchers and technicians involved in the project have on the ethical implications of their scientific activities; • the definition of ethics guidelines to be used by partners for building their policies and their own codes of conduct; • the elaboration of an ethical label template to characterize each product of the project, that partners will be able to use in order to give essential information about the ethical and social implications of their products; • the

  18. The research ethics evolution: From Nuremberg to Helsinki

    African Journals Online (AJOL)

    Carol Levine has stated that research ethics was 'born in scandal .... that subjects are able to protect themselves, with Principle 9 giving the subject as ... or advice which could weaken physical or mental resistance of a human being may be ...

  19. Ethical genetic research in Indigenous communities: challenges and successful approaches.

    Science.gov (United States)

    McWhirter, Rebekah E; Mununggirritj, Djapirri; Marika, Dipililnga; Dickinson, Joanne L; Condon, John R

    2012-12-01

    Indigenous populations, in common with all populations, stand to benefit from the potential of genetic research to lead to improvements in diagnostic and therapeutic tools for a wide range of complex diseases. However, many Indigenous communities, especially ones that are isolated, are not included in genetic research efforts. This situation is largely a consequence of the challenges of ethically conducting genetic research in Indigenous communities and compounded by Indigenous peoples' negative past experiences with genetic issues. To examine ways of addressing these challenges, we review one investigation of a cancer cluster in remote Aboriginal communities in Arnhem Land, Australia. Our experiences demonstrate that genetic research can be both ethically and successfully conducted with Indigenous communities by respecting the authority of the community, involving community members, and including regular community review throughout the research process. Copyright © 2012 Elsevier Ltd. All rights reserved.

  20. Reflexive journaling on emotional research topics: ethical issues for team researchers.

    Science.gov (United States)

    Malacrida, Claudia

    2007-12-01

    Traditional epistemological concerns in qualitative research focus on the effects of researchers' values and emotions on choices of research topics, power relations with research participants, and the influence of researcher standpoints on data collection and analysis. However, the research process also affects the researchers' values, emotions, and standpoints. Drawing on reflexive journal entries of assistant researchers involved in emotionally demanding team research, this article explores issues of emotional fallout for research team members, the implications of hierarchical power imbalances on research teams, and the importance of providing ethical opportunities for reflexive writing about the challenges of doing emotional research. Such reflexive approaches ensure the emotional safety of research team members and foster opportunities for emancipatory consciousness among research team members.