WorldWideScience

Sample records for personal genomics services

  1. Personal genomics services: whose genomes?

    Science.gov (United States)

    Gurwitz, David; Bregman-Eschet, Yael

    2009-07-01

    New companies offering personal whole-genome information services over the internet are dynamic and highly visible players in the personal genomics field. For fees currently ranging from US$399 to US$2500 and a vial of saliva, individuals can now purchase online access to their individual genetic information regarding susceptibility to a range of chronic diseases and phenotypic traits based on a genome-wide SNP scan. Most of the companies offering such services are based in the United States, but their clients may come from nearly anywhere in the world. Although the scientific validity, clinical utility and potential future implications of such services are being hotly debated, several ethical and regulatory questions related to direct-to-consumer (DTC) marketing strategies of genetic tests have not yet received sufficient attention. For example, how can we minimize the risk of unauthorized third parties from submitting other people's DNA for testing? Another pressing question concerns the ownership of (genotypic and phenotypic) information, as well as the unclear legal status of customers regarding their own personal information. Current legislation in the US and Europe falls short of providing clear answers to these questions. Until the regulation of personal genomics services catches up with the technology, we call upon commercial providers to self-regulate and coordinate their activities to minimize potential risks to individual privacy. We also point out some specific steps, along the trustee model, that providers of DTC personal genomics services as well as regulators and policy makers could consider for addressing some of the concerns raised below.

  2. Informing the Design of Direct-to-Consumer Interactive Personal Genomics Reports.

    Science.gov (United States)

    Shaer, Orit; Nov, Oded; Okerlund, Johanna; Balestra, Martina; Stowell, Elizabeth; Ascher, Laura; Bi, Joanna; Schlenker, Claire; Ball, Madeleine

    2015-06-12

    In recent years, people who sought direct-to-consumer genetic testing services have been increasingly confronted with an unprecedented amount of personal genomic information, which influences their decisions, emotional state, and well-being. However, these users of direct-to-consumer genetic services, who vary in their education and interests, frequently have little relevant experience or tools for understanding, reasoning about, and interacting with their personal genomic data. Online interactive techniques can play a central role in making personal genomic data useful for these users. We sought to (1) identify the needs of diverse users as they make sense of their personal genomic data, (2) consequently develop effective interactive visualizations of genomic trait data to address these users' needs, and (3) evaluate the effectiveness of the developed visualizations in facilitating comprehension. The first two user studies, conducted with 63 volunteers in the Personal Genome Project and with 36 personal genomic users who participated in a design workshop, respectively, employed surveys and interviews to identify the needs and expectations of diverse users. Building on the two initial studies, the third study was conducted with 730 Amazon Mechanical Turk users and employed a controlled experimental design to examine the effectiveness of different design interventions on user comprehension. The first two studies identified searching, comparing, sharing, and organizing data as fundamental to users' understanding of personal genomic data. The third study demonstrated that interactive and visual design interventions could improve the understandability of personal genomic reports for consumers. In particular, results showed that a new interactive bubble chart visualization designed for the study resulted in the highest comprehension scores, as well as the highest perceived comprehension scores. These scores were significantly higher than scores received using the

  3. Consumer Health Informatics Aspects of Direct-to-Consumer Personal Genomic Testing.

    Science.gov (United States)

    Gray, Kathleen; Stephen, Remya; Terrill, Bronwyn; Wilson, Brenda; Middleton, Anna; Tytherleigh, Rigan; Turbitt, Erin; Gaff, Clara; Savard, Jacqueline; Hickerton, Chriselle; Newson, Ainsley; Metcalfe, Sylvia

    2017-01-01

    This paper uses consumer health informatics as a framework to explore whether and how direct-to-consumer personal genomic testing can be regarded as a form of information which assists consumers to manage their health. It presents findings from qualitative content analysis of web sites that offer testing services, and of transcripts from focus groups conducted as part a study of the Australian public's expectations of personal genomics. Content analysis showed that service offerings have some features of consumer health information but lack consistency. Focus group participants were mostly unfamiliar with the specifics of test reports and related information services. Some of their ideas about aids to knowledge were in line with the benefits described on provider web sites, but some expectations were inflated. People were ambivalent about whether these services would address consumers' health needs, interests and contexts and whether they would support consumers' health self-management decisions and outcomes. There is scope for consumer health informatics approaches to refine the usage and the utility of direct-to-consumer personal genomic testing. Further research may focus on how uptake is affected by consumers' health literacy or by services' engagement with consumers about what they really want.

  4. Evidence that personal genome testing enhances student learning in a course on genomics and personalized medicine.

    Directory of Open Access Journals (Sweden)

    Keyan Salari

    Full Text Available An emerging debate in academic medical centers is not about the need for providing trainees with fundamental education on genomics, but rather the most effective educational models that should be deployed. At Stanford School of Medicine, a novel hands-on genomics course was developed in 2010 that provided students the option to undergo personal genome testing as part of the course curriculum. We hypothesized that use of personal genome testing in the classroom would enhance the learning experience of students. No data currently exist on how such methods impact student learning; thus, we surveyed students before and after the course to determine its impact. We analyzed responses using paired statistics from the 31 medical and graduate students who completed both pre-course and post-course surveys. Participants were stratified by those who did (N = 23 or did not (N = 8 undergo personal genome testing. In reflecting on the experience, 83% of students who underwent testing stated that they were pleased with their decision compared to 12.5% of students who decided against testing (P = 0.00058. Seventy percent of those who underwent personal genome testing self-reported a better understanding of human genetics on the basis of having undergone testing. Further, students who underwent personal genome testing demonstrated an average 31% increase in pre- to post-course scores on knowledge questions (P = 3.5×10(-6; this was significantly higher (P = 0.003 than students who did not undergo testing, who showed a non-significant improvement. Undergoing personal genome testing and using personal genotype data in the classroom enhanced students' self-reported and assessed knowledge of genomics, and did not appear to cause significant anxiety. At least for self-selected students, the incorporation of personal genome testing can be an effective educational tool to teach important concepts of clinical genomic testing.

  5. Atlas2 Cloud: a framework for personal genome analysis in the cloud.

    Science.gov (United States)

    Evani, Uday S; Challis, Danny; Yu, Jin; Jackson, Andrew R; Paithankar, Sameer; Bainbridge, Matthew N; Jakkamsetti, Adinarayana; Pham, Peter; Coarfa, Cristian; Milosavljevic, Aleksandar; Yu, Fuli

    2012-01-01

    Until recently, sequencing has primarily been carried out in large genome centers which have invested heavily in developing the computational infrastructure that enables genomic sequence analysis. The recent advancements in next generation sequencing (NGS) have led to a wide dissemination of sequencing technologies and data, to highly diverse research groups. It is expected that clinical sequencing will become part of diagnostic routines shortly. However, limited accessibility to computational infrastructure and high quality bioinformatic tools, and the demand for personnel skilled in data analysis and interpretation remains a serious bottleneck. To this end, the cloud computing and Software-as-a-Service (SaaS) technologies can help address these issues. We successfully enabled the Atlas2 Cloud pipeline for personal genome analysis on two different cloud service platforms: a community cloud via the Genboree Workbench, and a commercial cloud via the Amazon Web Services using Software-as-a-Service model. We report a case study of personal genome analysis using our Atlas2 Genboree pipeline. We also outline a detailed cost structure for running Atlas2 Amazon on whole exome capture data, providing cost projections in terms of storage, compute and I/O when running Atlas2 Amazon on a large data set. We find that providing a web interface and an optimized pipeline clearly facilitates usage of cloud computing for personal genome analysis, but for it to be routinely used for large scale projects there needs to be a paradigm shift in the way we develop tools, in standard operating procedures, and in funding mechanisms.

  6. Personalized medicine: new genomics, old lessons

    OpenAIRE

    Offit, Kenneth

    2011-01-01

    Personalized medicine uses traditional, as well as emerging concepts of the genetic and environmental basis of disease to individualize prevention, diagnosis and treatment. Personalized genomics plays a vital, but not exclusive role in this evolving model of personalized medicine. The distinctions between genetic and genomic medicine are more quantitative than qualitative. Personalized genomics builds on principles established by the integration of genetics into medical practice. Principles s...

  7. Ultrafast comparison of personal genomes

    OpenAIRE

    Mauldin, Denise; Hood, Leroy; Robinson, Max; Glusman, Gustavo

    2017-01-01

    We present an ultra-fast method for comparing personal genomes. We transform the standard genome representation (lists of variants relative to a reference) into 'genome fingerprints' that can be readily compared across sequencing technologies and reference versions. Because of their reduced size, computation on the genome fingerprints is fast and requires little memory. This enables scaling up a variety of important genome analyses, including quantifying relatedness, recognizing duplicative s...

  8. [Personal genomics: are we debating the right Issues?].

    Science.gov (United States)

    Vayena, E; Mauch, F

    2012-07-25

    The debate about personal genomics and their role in personalized medicine has been, to some extent, hijacked by the controversy about commercially available genomic tests sold directly to consumers. The clinical validity and utility of such tests are currently limited and most medical associations recommend that consumers refrain from testing. Conversely, DTC genomics proponents and particularly the DTC industry argue that there is personal utility in acquiring genomic information. While it is necessary to debate risks and benefits of DTC genomics, we should not lose sight of the increasingly important role that genomics will play in medical practice and public health. Therefore, and in anticipation of this shift we also need to focus on important implications from the use of genomics information such as genetic discrimination, privacy protection and equitable access to health care. Undoubtedly, personal genomics will challenge our social norms maybe more than our medicine. Sticking to the polarization of «to have or not to have DTC genomics» risks to takes us away from the critical issues we need to be debating.

  9. Anticipation of Personal Genomics Data Enhances Interest and Learning Environment in Genomics and Molecular Biology Undergraduate Courses.

    Science.gov (United States)

    Weber, K Scott; Jensen, Jamie L; Johnson, Steven M

    2015-01-01

    An important discussion at colleges is centered on determining more effective models for teaching undergraduates. As personalized genomics has become more common, we hypothesized it could be a valuable tool to make science education more hands on, personal, and engaging for college undergraduates. We hypothesized that providing students with personal genome testing kits would enhance the learning experience of students in two undergraduate courses at Brigham Young University: Advanced Molecular Biology and Genomics. These courses have an emphasis on personal genomics the last two weeks of the semester. Students taking these courses were given the option to receive personal genomics kits in 2014, whereas in 2015 they were not. Students sent their personal genomics samples in on their own and received the data after the course ended. We surveyed students in these courses before and after the two-week emphasis on personal genomics to collect data on whether anticipation of obtaining their own personal genomic data impacted undergraduate student learning. We also tested to see if specific personal genomic assignments improved the learning experience by analyzing the data from the undergraduate students who completed both the pre- and post-course surveys. Anticipation of personal genomic data significantly enhanced student interest and the learning environment based on the time students spent researching personal genomic material and their self-reported attitudes compared to those who did not anticipate getting their own data. Personal genomics homework assignments significantly enhanced the undergraduate student interest and learning based on the same criteria and a personal genomics quiz. We found that for the undergraduate students in both molecular biology and genomics courses, incorporation of personal genomic testing can be an effective educational tool in undergraduate science education.

  10. From genomic variation to personalized medicine

    DEFF Research Database (Denmark)

    Wesolowska, Agata; Schmiegelow, Kjeld

    Genomic variation is the basis of interindividual differences in observable traits and disease susceptibility. Genetic studies are the driving force of personalized medicine, as many of the differences in treatment efficacy can be attributed to our genomic background. The rapid development...... a considerable amount of the phenotype variability, hence the major difficulty of interpretation lies in the complexity of molecular interactions. This PhD thesis describes the state-of-art of the functional human variation research (Chapter 1) and introduces childhood acute lymphoblastic leukaemia (ALL...... the thesis and includes some final remarks on the perspectives of genomic variation research and personalized medicine. In summary, this thesis demonstrates the feasibility of integrative analyses of genomic variations and introduces large-scale hypothesis-driven SNP exploration studies as an emerging...

  11. Ethical Considerations Regarding Classroom Use of Personal Genomic Information

    Directory of Open Access Journals (Sweden)

    Lisa S. Parker

    2014-10-01

    Full Text Available Rapidly decreasing costs of genetic technologies—especially next-generation sequencing—and intensifying need for a clinical workforce trained in genomic medicine have increased interest in having students use personal genomic information to motivate and enhance genomics education. Numerous ethical issues attend classroom/pedagogical use of students’ personal genomic information, including their informed decision to participate, pressures to participate, privacy concerns, and psychosocial sequelae of learning genomic information. This paper addresses these issues, advocates explicit discussion of these issues to cultivate students’ ethical reasoning skills, suggests ways to mitigate potential harms, and recommends collection of ethically relevant data regarding pedagogical use of personal genomic information.

  12. Genetic gatekeepers: regulating direct-to-consumer genomic services in an era of participatory medicine.

    Science.gov (United States)

    Palmer, Jessica Elizabeth

    2012-01-01

    Should consumers be able to obtain information about their own bodies, even if it has no proven medical value? Direct-to-consumer ("DTC") genomic companies offer consumers two services: generation of the consumer's personal genetic sequence, and interpretation of that sequence in light of current research. Concerned that consumers will misunderstand genomic information and make ill-advised health decisions, regulators, legislators and scholars have advocated restricted access to DTC genomic services. The Food and Drug Administration, which has historically refrained from regulating most genetic tests, has announced its intent to treat DTC genomic services as medical devices because they make "medical claims." This Article argues that FDA regulation of genomic services as medical devices would be counterproductive. Clinical laboratories conducting genetic tests are already overseen by a federal regime administered by the Centers for Medicare and Medicaid Services. While consumers and clinicians would benefit from clearer communication of test results and their health implications, FDA's gatekeeping framework is ill-suited to weigh the safety and efficacy of genomic information that is not medically actionable in traditional ways. Playing gatekeeper would burden FDA's resources, conflict with the patient-empowering policies promoted by personalized medicine initiatives, impair individuals' access to information in which they have powerful autonomy interests, weaken novel participatory research infrastructures, and set a poor precedent for the future regulation of medical information. Rather than applying its risk-based regulatory framework to genetic information, FDA should ameliorate regulatory uncertainty by working with the Federal Trade Commission and Centers for Medicare and Medicaid Services to ensure that DTC genomic services deliver analytically valid data, market and implement their services in a truthful manner, and fully disclose the limitations of their

  13. Personal utility in genomic testing: a systematic literature review.

    Science.gov (United States)

    Kohler, Jennefer N; Turbitt, Erin; Biesecker, Barbara B

    2017-06-01

    Researchers and clinicians refer to outcomes of genomic testing that extend beyond clinical utility as 'personal utility'. No systematic delineation of personal utility exists, making it challenging to appreciate its scope. Identifying empirical elements of personal utility reported in the literature offers an inventory that can be subsequently ranked for its relative value by those who have undergone genomic testing. A systematic review was conducted of the peer-reviewed literature reporting non-health-related outcomes of genomic testing from 1 January 2003 to 5 August 2016. Inclusion criteria specified English language, date of publication, and presence of empirical evidence. Identified outcomes were iteratively coded into unique domains. The search returned 551 abstracts from which 31 studies met the inclusion criteria. Study populations and type of genomic testing varied. Coding resulted in 15 distinct elements of personal utility, organized into three domains related to personal outcomes: affective, cognitive, and behavioral; and one domain related to social outcomes. The domains of personal utility may inform pre-test counseling by helping patients anticipate potential value of test results beyond clinical utility. Identified elements may also inform investigations into the prevalence and importance of personal utility to future test users.

  14. Informed consent in direct-to-consumer personal genome testing: the outline of a model between specific and generic consent.

    Science.gov (United States)

    Bunnik, Eline M; Janssens, A Cecile J W; Schermer, Maartje H N

    2014-09-01

    Broad genome-wide testing is increasingly finding its way to the public through the online direct-to-consumer marketing of so-called personal genome tests. Personal genome tests estimate genetic susceptibilities to multiple diseases and other phenotypic traits simultaneously. Providers commonly make use of Terms of Service agreements rather than informed consent procedures. However, to protect consumers from the potential physical, psychological and social harms associated with personal genome testing and to promote autonomous decision-making with regard to the testing offer, we argue that current practices of information provision are insufficient and that there is a place--and a need--for informed consent in personal genome testing, also when it is offered commercially. The increasing quantity, complexity and diversity of most testing offers, however, pose challenges for information provision and informed consent. Both specific and generic models for informed consent fail to meet its moral aims when applied to personal genome testing. Consumers should be enabled to know the limitations, risks and implications of personal genome testing and should be given control over the genetic information they do or do not wish to obtain. We present the outline of a new model for informed consent which can meet both the norm of providing sufficient information and the norm of providing understandable information. The model can be used for personal genome testing, but will also be applicable to other, future forms of broad genetic testing or screening in commercial and clinical settings. © 2012 John Wiley & Sons Ltd.

  15. Playing with heart and soul…and genomes: sports implications and applications of personal genomics.

    Science.gov (United States)

    Wagner, Jennifer K

    2013-01-01

    Whether the integration of genetic/omic technologies in sports contexts will facilitate player success, promote player safety, or spur genetic discrimination depends largely upon the game rules established by those currently designing genomic sports medicine programs. The integration has already begun, but there is not yet a playbook for best practices. Thus far discussions have focused largely on whether the integration would occur and how to prevent the integration from occurring, rather than how it could occur in such a way that maximizes benefits, minimizes risks, and avoids the exacerbation of racial disparities. Previous empirical research has identified members of the personal genomics industry offering sports-related DNA tests, and previous legal research has explored the impact of collective bargaining in professional sports as it relates to the employment protections of the Genetic Information Nondiscrimination Act (GINA). Building upon that research and upon participant observations with specific sports-related DNA tests purchased from four direct-to-consumer companies in 2011 and broader personal genomics (PGx) services, this anthropological, legal, and ethical (ALE) discussion highlights fundamental issues that must be addressed by those developing personal genomic sports medicine programs, either independently or through collaborations with commercial providers. For example, the vulnerability of student-athletes creates a number of issues that require careful, deliberate consideration. More broadly, however, this ALE discussion highlights potential sports-related implications (that ultimately might mitigate or, conversely, exacerbate racial disparities among athletes) of whole exome/genome sequencing conducted by biomedical researchers and clinicians for non-sports purposes. For example, the possibility that exome/genome sequencing of individuals who are considered to be non-patients, asymptomatic, normal, etc. will reveal the presence of variants of

  16. Service Interaction Flow Analysis Technique for Service Personalization

    DEFF Research Database (Denmark)

    Korhonen, Olli; Kinnula, Marianne; Syrjanen, Anna-Liisa

    2017-01-01

    Service interaction flows are difficult to capture, analyze, outline, and represent for research and design purposes. We examine how variation of personalized service flows in technology-mediated service interaction can be modeled and analyzed to provide information on how service personalization...... could support interaction. We have analyzed service interaction cases in a context of technology-mediated car rental service. With the analysis technique we propose, inspired by Interaction Analysis method, we were able to capture and model the situational service interaction. Our contribution regarding...... technology-mediated service interaction design is twofold: First, with the increased understanding on the role of personalization in managing variation in technology-mediated service interaction, our study contributes to designing service management information systems and human-computer interfaces...

  17. Toward Privacy-Preserving Personalized Recommendation Services

    Directory of Open Access Journals (Sweden)

    Cong Wang

    2018-02-01

    Full Text Available Recommendation systems are crucially important for the delivery of personalized services to users. With personalized recommendation services, users can enjoy a variety of targeted recommendations such as movies, books, ads, restaurants, and more. In addition, personalized recommendation services have become extremely effective revenue drivers for online business. Despite the great benefits, deploying personalized recommendation services typically requires the collection of users’ personal data for processing and analytics, which undesirably makes users susceptible to serious privacy violation issues. Therefore, it is of paramount importance to develop practical privacy-preserving techniques to maintain the intelligence of personalized recommendation services while respecting user privacy. In this paper, we provide a comprehensive survey of the literature related to personalized recommendation services with privacy protection. We present the general architecture of personalized recommendation systems, the privacy issues therein, and existing works that focus on privacy-preserving personalized recommendation services. We classify the existing works according to their underlying techniques for personalized recommendation and privacy protection, and thoroughly discuss and compare their merits and demerits, especially in terms of privacy and recommendation accuracy. We also identity some future research directions. Keywords: Privacy protection, Personalized recommendation services, Targeted delivery, Collaborative filtering, Machine learning

  18. Public health genomics and personalized prevention: lessons from the COGS project.

    Science.gov (United States)

    Pashayan, N; Hall, A; Chowdhury, S; Dent, T; Pharoah, P D P; Burton, H

    2013-11-01

    Using the principles of public health genomics, we examined the opportunities and challenges of implementing personalized prevention programmes for cancer at the population level. Our model-based estimates indicate that polygenic risk stratification can potentially improve the effectiveness and cost-effectiveness of screening programmes. However, compared with 'one-size-fits-all' screening programmes, personalized screening adds further layers of complexity to the organization of screening services and raises ethical, legal and social challenges. Before polygenic inheritance is translated into population screening strategy, evidence from empirical research and engagement with and education of the public and the health professionals are needed. © 2013 The Association for the Publication of the Journal of Internal Medicine.

  19. Genome technologies and personalized dental medicine.

    Science.gov (United States)

    Eng, G; Chen, A; Vess, T; Ginsburg, G S

    2012-04-01

    The addition of genomic information to our understanding of oral disease is driving important changes in oral health care. It is anticipated that genome-derived information will promote a deeper understanding of disease etiology and permit earlier diagnosis, allowing for preventative measures prior to disease onset rather than treatment that attempts to repair the diseased state. Advances in genome technologies have fueled expectations for this proactive healthcare approach. Application of genomic testing is expanding and has already begun to find its way into the practice of clinical dentistry. To take full advantage of the information and technologies currently available, it is vital that dental care providers, consumers, and policymakers be aware of genomic approaches to understanding of oral diseases and the application of genomic testing to disease diagnosis and treatment. Ethical, legal, clinical, and educational initiatives are also required to responsibly incorporate genomic information into the practice of dentistry. This article provides an overview of the application of genomic technologies to oral health care and introduces issues that require consideration if we are to realize the full potential of genomics to enable the practice of personalized dental medicine. © 2011 John Wiley & Sons A/S.

  20. Semantic Learning Service Personalized

    Directory of Open Access Journals (Sweden)

    Yibo Chen

    2012-02-01

    Full Text Available To provide users with more suitable and personalized service, personalization is widely used in various fields. Current e-Learning systems search for learning resources using information search technology, based on the keywords that selected or inputted by the user. Due to lack of semantic analysis for keywords and exploring the user contexts, the system cannot provide a good learning experiment. In this paper, we defined the concept and characteristic of the personalized learning service, and proposed a semantic learning service personalized framework. Moreover, we made full use of semantic technology, using ontologies to represent the learning contents and user profile, mining and utilizing the friendship and membership of the social relationship to construct the user social relationship profile, and improved the collaboration filtering algorithm to recommend personalized learning resources for users. The results of the empirical evaluation show that the approach is effectiveness in augmenting recommendation.

  1. Attitudes towards personal genomics among older Swiss adults: An exploratory study

    Directory of Open Access Journals (Sweden)

    Laura Mählmann

    2016-03-01

    Conclusion: This study indicates a relatively positive overall attitude towards personal genomic testing among older Swiss adults, a group not typically represented in surveys about personal genomics. Genomic data of older adults can be highly relevant to late life health and maintenance of quality of life. In addition they can be an invaluable source for better understanding of longevity, health and disease. Understanding the attitudes of this population towards genomic analyses, although important, remains under-examined.

  2. Personalization of Rule-based Web Services.

    Science.gov (United States)

    Choi, Okkyung; Han, Sang Yong

    2008-04-04

    Nowadays Web users have clearly expressed their wishes to receive personalized services directly. Personalization is the way to tailor services directly to the immediate requirements of the user. However, the current Web Services System does not provide any features supporting this such as consideration of personalization of services and intelligent matchmaking. In this research a flexible, personalized Rule-based Web Services System to address these problems and to enable efficient search, discovery and construction across general Web documents and Semantic Web documents in a Web Services System is proposed. This system utilizes matchmaking among service requesters', service providers' and users' preferences using a Rule-based Search Method, and subsequently ranks search results. A prototype of efficient Web Services search and construction for the suggested system is developed based on the current work.

  3. Voting with their mice: personal genome testing and the "participatory turn" in disease research.

    Science.gov (United States)

    Prainsack, Barbara

    2011-05-01

    While the availability of genome tests on the internet has given rise to heated debates about the likely impact on personal genome information on test-takers, on insurance, and on healthcare systems, in this article I argue that a more tangible effect of personal genomics is that it has started to change how participation in disease research is conceived and enacted. I examine three models of research participation that personal genomics customers are encouraged to engage in. I conclude with an evaluation of the pitfalls and benefits of "crowdsourcing" genetic disease research in the context of personal genomics.

  4. Personality Diagnosis for Personalized eHealth Services

    Science.gov (United States)

    Cortellese, Fabio; Nalin, Marco; Morandi, Angelica; Sanna, Alberto; Grasso, Floriana

    In this paper we present two different approaches to personality diagnosis, for the provision of innovative personalized services, as used in a case study where diabetic patients were supported in the improvement of physical activity in their daily life. The first approach presented relies on a static clustering of the population, with a specific motivation strategy designed for each cluster. The second approach relies on a dynamic population clustering, making use of recommendation systems and algorithms, like Collaborative Filtering. We discuss pro and cons of each approach and a possible combination of the two, as the most promising solution for this and other personalization services in eHealth.

  5. Personalized Medicine in a New Genomic Era: Ethical and Legal Aspects.

    Science.gov (United States)

    Shoaib, Maria; Rameez, Mansoor Ali Merchant; Hussain, Syed Ather; Madadin, Mohammed; Menezes, Ritesh G

    2017-08-01

    The genome of two completely unrelated individuals is quite similar apart from minor variations called single nucleotide polymorphisms which contribute to the uniqueness of each and every person. These single nucleotide polymorphisms are of great interest clinically as they are useful in figuring out the susceptibility of certain individuals to particular diseases and for recognizing varied responses to pharmacological interventions. This gives rise to the idea of 'personalized medicine' as an exciting new therapeutic science in this genomic era. Personalized medicine suggests a unique treatment strategy based on an individual's genetic make-up. Its key principles revolve around applied pharmaco-genomics, pharmaco-kinetics and pharmaco-proteomics. Herein, the ethical and legal aspects of personalized medicine in a new genomic era are briefly addressed. The ultimate goal is to comprehensively recognize all relevant forms of genetic variation in each individual and be able to interpret this information in a clinically meaningful manner within the ambit of ethical and legal considerations. The authors of this article firmly believe that personalized medicine has the potential to revolutionize the current landscape of medicine as it makes its way into clinical practice.

  6. Challenges, Solutions, and Quality Metrics of Personal Genome Assembly in Advancing Precision Medicine

    Directory of Open Access Journals (Sweden)

    Wenming Xiao

    2016-04-01

    Full Text Available Even though each of us shares more than 99% of the DNA sequences in our genome, there are millions of sequence codes or structure in small regions that differ between individuals, giving us different characteristics of appearance or responsiveness to medical treatments. Currently, genetic variants in diseased tissues, such as tumors, are uncovered by exploring the differences between the reference genome and the sequences detected in the diseased tissue. However, the public reference genome was derived with the DNA from multiple individuals. As a result of this, the reference genome is incomplete and may misrepresent the sequence variants of the general population. The more reliable solution is to compare sequences of diseased tissue with its own genome sequence derived from tissue in a normal state. As the price to sequence the human genome has dropped dramatically to around $1000, it shows a promising future of documenting the personal genome for every individual. However, de novo assembly of individual genomes at an affordable cost is still challenging. Thus, till now, only a few human genomes have been fully assembled. In this review, we introduce the history of human genome sequencing and the evolution of sequencing platforms, from Sanger sequencing to emerging “third generation sequencing” technologies. We present the currently available de novo assembly and post-assembly software packages for human genome assembly and their requirements for computational infrastructures. We recommend that a combined hybrid assembly with long and short reads would be a promising way to generate good quality human genome assemblies and specify parameters for the quality assessment of assembly outcomes. We provide a perspective view of the benefit of using personal genomes as references and suggestions for obtaining a quality personal genome. Finally, we discuss the usage of the personal genome in aiding vaccine design and development, monitoring host

  7. Designing Personalization in Technology-Based Services

    Science.gov (United States)

    Lee, Min Kyung

    2013-01-01

    Personalization technology has the potential to optimize service for each person's unique needs and characteristics. One way to optimize service is to allow people to customize the service themselves; another is to proactively tailor services based on information provided by people or inferred from their past behaviors. These approaches function…

  8. Meta-analysis of genome-wide association studies for personality

    NARCIS (Netherlands)

    M.H.M. de Moor; P.T. Costa Jr; A. Terracciano; R.F. Krueger; E.J.C. de Geus (Eco); T. Toshiko; B.W.J.H. Penninx (Brenda); T. Esko; P.A.F. Madden (Pamela); J. Derringer; N. Amin (Najaf); G.A.H.M. Willemsen (Gonneke); J.J. Hottenga (Jouke Jan); M.A. Distel (Marijn); M. Uda (Manuela); S. Sanna (Serena); P. Spinhoven; C.A. Hartman; P.F. Sullivan (Patrick); A. Realo; J. Allik; A.C. Heath; M.L. Pergadia; P. Lin; R. Grucza; T. Nutile; M. Ciullo; D. Rujescu (Dan); I. Giegling (Ina); B. Konte; E. Widen (Elisabeth); D.L. Cousminer (Diana); J.G. Eriksson; A. Palotie; L. Peltonen; M. Luciano (Michelle); A. Tenesa (Albert); G. Davies; L.M. Lopez; N.K. Hansell (Narelle); S.E. Medland (Sarah Elizabeth); L. Ferrucci; D. Schlessinger; G.W. Montgomery; M.J. Wright (Margaret); Y.S. Aulchenko (Yurii); A.C.J.W. Janssens (Cécile); B.A. Oostra (Ben); A. Metspalu (Andres); I.J. Deary; K. Räikkönen (Katri); L.J. Bierut (Laura); N.G. Martin; C.M. van Duijn (Cornelia); D.I. Boomsma (Dorret); G.R. Abecasis (Gonçalo); A. Agrawal (Arpana)

    2012-01-01

    textabstractPersonality can be thought of as a set of characteristics that influence people's thoughts, feelings and behavior across a variety of settings. Variation in personality is predictive of many outcomes in life, including mental health. Here we report on a meta-analysis of genome-wide

  9. Harvard Personal Genome Project: lessons from participatory public research

    Science.gov (United States)

    2014-01-01

    Background Since its initiation in 2005, the Harvard Personal Genome Project has enrolled thousands of volunteers interested in publicly sharing their genome, health and trait data. Because these data are highly identifiable, we use an ‘open consent’ framework that purposefully excludes promises about privacy and requires participants to demonstrate comprehension prior to enrollment. Discussion Our model of non-anonymous, public genomes has led us to a highly participatory model of researcher-participant communication and interaction. The participants, who are highly committed volunteers, self-pursue and donate research-relevant datasets, and are actively engaged in conversations with both our staff and other Personal Genome Project participants. We have quantitatively assessed these communications and donations, and report our experiences with returning research-grade whole genome data to participants. We also observe some of the community growth and discussion that has occurred related to our project. Summary We find that public non-anonymous data is valuable and leads to a participatory research model, which we encourage others to consider. The implementation of this model is greatly facilitated by web-based tools and methods and participant education. Project results are long-term proactive participant involvement and the growth of a community that benefits both researchers and participants. PMID:24713084

  10. Harvard Personal Genome Project: lessons from participatory public research.

    Science.gov (United States)

    Ball, Madeleine P; Bobe, Jason R; Chou, Michael F; Clegg, Tom; Estep, Preston W; Lunshof, Jeantine E; Vandewege, Ward; Zaranek, Alexander; Church, George M

    2014-02-28

    Since its initiation in 2005, the Harvard Personal Genome Project has enrolled thousands of volunteers interested in publicly sharing their genome, health and trait data. Because these data are highly identifiable, we use an 'open consent' framework that purposefully excludes promises about privacy and requires participants to demonstrate comprehension prior to enrollment. Our model of non-anonymous, public genomes has led us to a highly participatory model of researcher-participant communication and interaction. The participants, who are highly committed volunteers, self-pursue and donate research-relevant datasets, and are actively engaged in conversations with both our staff and other Personal Genome Project participants. We have quantitatively assessed these communications and donations, and report our experiences with returning research-grade whole genome data to participants. We also observe some of the community growth and discussion that has occurred related to our project. We find that public non-anonymous data is valuable and leads to a participatory research model, which we encourage others to consider. The implementation of this model is greatly facilitated by web-based tools and methods and participant education. Project results are long-term proactive participant involvement and the growth of a community that benefits both researchers and participants.

  11. Re-Examining the Gene in Personalized Genomics

    Science.gov (United States)

    Bartol, Jordan

    2013-01-01

    Personalized genomics companies (PG; also called "direct-to-consumer genetics") are businesses marketing genetic testing to consumers over the Internet. While much has been written about these new businesses, little attention has been given to their roles in science communication. This paper provides an analysis of the gene concept…

  12. VnpPersonService

    Data.gov (United States)

    Department of Veterans Affairs — Common Web Service for VONAPP. Retrieves, creates, updates and deletes a veteranÆs VNP_PERSON record in the Corporate database for a claim selected in the GUI by the...

  13. The whole genome sequences and experimentally phased haplotypes of over 100 personal genomes.

    Science.gov (United States)

    Mao, Qing; Ciotlos, Serban; Zhang, Rebecca Yu; Ball, Madeleine P; Chin, Robert; Carnevali, Paolo; Barua, Nina; Nguyen, Staci; Agarwal, Misha R; Clegg, Tom; Connelly, Abram; Vandewege, Ward; Zaranek, Alexander Wait; Estep, Preston W; Church, George M; Drmanac, Radoje; Peters, Brock A

    2016-10-11

    Since the completion of the Human Genome Project in 2003, it is estimated that more than 200,000 individual whole human genomes have been sequenced. A stunning accomplishment in such a short period of time. However, most of these were sequenced without experimental haplotype data and are therefore missing an important aspect of genome biology. In addition, much of the genomic data is not available to the public and lacks phenotypic information. As part of the Personal Genome Project, blood samples from 184 participants were collected and processed using Complete Genomics' Long Fragment Read technology. Here, we present the experimental whole genome haplotyping and sequencing of these samples to an average read coverage depth of 100X. This is approximately three-fold higher than the read coverage applied to most whole human genome assemblies and ensures the highest quality results. Currently, 114 genomes from this dataset are freely available in the GigaDB repository and are associated with rich phenotypic data; the remaining 70 should be added in the near future as they are approved through the PGP data release process. For reproducibility analyses, 20 genomes were sequenced at least twice using independent LFR barcoded libraries. Seven genomes were also sequenced using Complete Genomics' standard non-barcoded library process. In addition, we report 2.6 million high-quality, rare variants not previously identified in the Single Nucleotide Polymorphisms database or the 1000 Genomes Project Phase 3 data. These genomes represent a unique source of haplotype and phenotype data for the scientific community and should help to expand our understanding of human genome evolution and function.

  14. Clinical decision support for whole genome sequence information leveraging a service-oriented architecture: a prototype.

    Science.gov (United States)

    Welch, Brandon M; Rodriguez-Loya, Salvador; Eilbeck, Karen; Kawamoto, Kensaku

    2014-01-01

    Whole genome sequence (WGS) information could soon be routinely available to clinicians to support the personalized care of their patients. At such time, clinical decision support (CDS) integrated into the clinical workflow will likely be necessary to support genome-guided clinical care. Nevertheless, developing CDS capabilities for WGS information presents many unique challenges that need to be overcome for such approaches to be effective. In this manuscript, we describe the development of a prototype CDS system that is capable of providing genome-guided CDS at the point of care and within the clinical workflow. To demonstrate the functionality of this prototype, we implemented a clinical scenario of a hypothetical patient at high risk for Lynch Syndrome based on his genomic information. We demonstrate that this system can effectively use service-oriented architecture principles and standards-based components to deliver point of care CDS for WGS information in real-time.

  15. Protein annotation in the era of personal genomics

    DEFF Research Database (Denmark)

    Holberg Blicher, Thomas; Gupta, Ramneek; Wesolowska, Agata

    2010-01-01

    the differences between many individuals of the same species-humans in particular-the focus needs be on the functional impact of individual residue variation. To fulfil the promises of personal genomics, we need to start asking not only what is in a genome but also how millions of small differences between......Protein annotation provides a condensed and systematic view on the function of individual proteins. It has traditionally dealt with sorting proteins into functional categories, which for example has proven to be successful for the comparison of different species. However, if we are to understand...... individual genomes affect protein function and in turn human health. Copyright © 2010 Elsevier Ltd. All rights reserved....

  16. Accessing the SEED genome databases via Web services API: tools for programmers.

    Science.gov (United States)

    Disz, Terry; Akhter, Sajia; Cuevas, Daniel; Olson, Robert; Overbeek, Ross; Vonstein, Veronika; Stevens, Rick; Edwards, Robert A

    2010-06-14

    The SEED integrates many publicly available genome sequences into a single resource. The database contains accurate and up-to-date annotations based on the subsystems concept that leverages clustering between genomes and other clues to accurately and efficiently annotate microbial genomes. The backend is used as the foundation for many genome annotation tools, such as the Rapid Annotation using Subsystems Technology (RAST) server for whole genome annotation, the metagenomics RAST server for random community genome annotations, and the annotation clearinghouse for exchanging annotations from different resources. In addition to a web user interface, the SEED also provides Web services based API for programmatic access to the data in the SEED, allowing the development of third-party tools and mash-ups. The currently exposed Web services encompass over forty different methods for accessing data related to microbial genome annotations. The Web services provide comprehensive access to the database back end, allowing any programmer access to the most consistent and accurate genome annotations available. The Web services are deployed using a platform independent service-oriented approach that allows the user to choose the most suitable programming platform for their application. Example code demonstrate that Web services can be used to access the SEED using common bioinformatics programming languages such as Perl, Python, and Java. We present a novel approach to access the SEED database. Using Web services, a robust API for access to genomics data is provided, without requiring large volume downloads all at once. The API ensures timely access to the most current datasets available, including the new genomes as soon as they come online.

  17. 75 FR 52538 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2010-08-26

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... unwarranted invasion of personal privacy. Name of Committee: National Human Genome Research Institute Special... Person: Ken D. Nakamura, PhD, Scientific Review Officer, Scientific Review Branch, National Human Genome...

  18. 76 FR 35223 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2011-06-16

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... unwarranted invasion of personal privacy. Name of Committee: National Human Genome Research Institute Special... Person: Rudy O. Pozzatti, PhD, Scientific Review Officer, Scientific Review Branch, National Human Genome...

  19. Manager personality, manager service quality orientation, and service climate: test of a model.

    Science.gov (United States)

    Salvaggio, Amy Nicole; Schneider, Benjamin; Nishii, Lisa H; Mayer, David M; Ramesh, Anuradha; Lyon, Julie S

    2007-11-01

    This article conceptually and empirically explores the relationships among manager personality, manager service quality orientation, and climate for customer service. Data were collected from 1,486 employees and 145 managers in grocery store departments (N = 145) to test the authors' theoretical model. Largely consistent with hypotheses, results revealed that core self-evaluations were positively related to managers' service quality orientation, even after dimensions of the Big Five model of personality were controlled, and that service quality orientation fully mediated the relationship between personality and global service climate. Implications for personality and organizational climate research are discussed. (c) 2007 APA

  20. Australians' views on personal genomic testing: focus group findings from the Genioz study.

    Science.gov (United States)

    Metcalfe, Sylvia A; Hickerton, Chriselle; Savard, Jacqueline; Terrill, Bronwyn; Turbitt, Erin; Gaff, Clara; Gray, Kathleen; Middleton, Anna; Wilson, Brenda; Newson, Ainsley J

    2018-04-30

    Personal genomic testing provides healthy individuals with access to information about their genetic makeup for purposes including ancestry, paternity, sporting ability and health. Such tests are available commercially and globally, with accessibility expected to continue to grow, including in Australia; yet little is known of the views/expectations of Australians. Focus groups were conducted within a multi-stage, cross-disciplinary project (Genioz) to explore this. In mid-2015, 56 members of the public participated in seven focus groups, allocated into three age groups: 18-24, 25-49, and ≥50 years. Three researchers coded transcripts independently and generated themes. Awareness of personal genomic testing was low, but most could deduce what "personal genomics" might entail. Very few had heard of the term "direct-to-consumer" testing, which has implications for organisations developing information to support individuals in their decision-making. Participants' understanding of genetics was varied and drawn from several sources. There were diverse perceptions of the relative influence of genetics and environment on health, mental health, behavior, talent, or personality. Views about having a personal genomic test were mixed, with greater interest in health-related tests if they believed there was a reason for doing so. However, many expressed scepticisms about the types of tests available, and how the information might be used; concerns were also raised about privacy and the potential for discrimination. These exploratory findings inform subsequent stages of the Genioz study, thereby contributing to strategies of supporting Australians to understand and make meaningful and well-considered decisions about the benefits, harms, and implications of personal genomic tests.

  1. Ethical considerations of research policy for personal genome analysis: the approach of the Genome Science Project in Japan.

    Science.gov (United States)

    Minari, Jusaku; Shirai, Tetsuya; Kato, Kazuto

    2014-12-01

    As evidenced by high-throughput sequencers, genomic technologies have recently undergone radical advances. These technologies enable comprehensive sequencing of personal genomes considerably more efficiently and less expensively than heretofore. These developments present a challenge to the conventional framework of biomedical ethics; under these changing circumstances, each research project has to develop a pragmatic research policy. Based on the experience with a new large-scale project-the Genome Science Project-this article presents a novel approach to conducting a specific policy for personal genome research in the Japanese context. In creating an original informed-consent form template for the project, we present a two-tiered process: making the draft of the template following an analysis of national and international policies; refining the draft template in conjunction with genome project researchers for practical application. Through practical use of the template, we have gained valuable experience in addressing challenges in the ethical review process, such as the importance of sharing details of the latest developments in genomics with members of research ethics committees. We discuss certain limitations of the conventional concept of informed consent and its governance system and suggest the potential of an alternative process using information technology.

  2. Personal dosimetry service of VF, a.s. company

    International Nuclear Information System (INIS)

    Prasek, P.

    2009-01-01

    The VF, a.s. Company will extend its services in the area of personal dosimetry at the end of 2008, which is fully in compliance with the requirements of the Atomic Act, section 9 paragraph (1) letter r) and Decree on Radiation Protection, section 59 paragraph (1) letter a). Optically stimulated luminescence was selected in VF .a.s. as the most advantageous and the most advanced technology for the integral personal dosimetry. Optically stimulated luminescence (OSL) has been using in dosimetry for more than ten years. Although it is relatively new technology , its indisputable advantages predetermine that technology has significantly benefited in personal dosimetry services within a short time all over the advanced world. The VF, a.s. personal dosimetry service is based on the licensed products of LANDAUER, the US company, which is the world leader in OSL dosimetry. Crystalline Al 2 O 3 :C was selected as the detection material. All equipment of personal dosimetry service is installed in the VF Centre of Technology in Cerna Hora. The personal dosimetry service is incorporated in the International LANDAUER Dosimetry Service Network, and in the European Union, it is directly linked to the LANDAUER European Headquarters with its office in Paris. As a part of the OSL technology licence, the VF personal dosimetry service was included in the inter-laboratory comparison programme of the LANDAUER syndicate. (author)

  3. Personal dosimetry service of VF, a.s. company

    International Nuclear Information System (INIS)

    Prasek, P.

    2008-01-01

    The VF, a.s. Company will extend its services in the area of personal dosimetry at the end of 2008, which is fully in compliance with the requirements of the Atomic Act, section 9 paragraph (1) letter r) and Decree on Radiation Protection, section 59 paragraph (1) letter a). Optically stimulated luminescence was selected in VF .a.s. as the most advantageous and the most advanced technology for the integral personal dosimetry . Optically stimulated luminescence (OSL) has been using in dosimetry for more than ten years. Although it is relatively new technology , its indisputable advantages predetermine that technology has significantly benefited in personal dosimetry services within a short time all over the advanced world. The VF, a.s. personal dosimetry service is based on the licensed products of LANDAUER, the US company, which is the world leader in OSL dosimetry. Crystalline Al 2 O 3 :C was selected as the detection material. All equipment of personal dosimetry service is installed in the VF Centre of Technology in Cerna Hora. The personal dosimetry service is incorporated in the International LANDAUER Dosimetry Service Network, and in the European Union, it is directly linked to the LANDAUER European Headquarters with its office in Paris. As a part of the OSL technology licence, the VF personal dosimetry service was included in the inter-laboratory comparison programme of the LANDAUER syndicate. (author)

  4. Personal genome testing in medical education: student experiences with genotyping in the classroom.

    Science.gov (United States)

    Vernez, Simone Lucia; Salari, Keyan; Ormond, Kelly E; Lee, Sandra Soo-Jin

    2013-01-01

    Direct-to-consumer (DTC) personal genotyping services are beginning to be adopted by educational institutions as pedagogical tools for learning about human genetics. However, there is little known about student reactions to such testing. This study investigated student experiences and attitudes towards DTC personal genome testing. Individual interviews were conducted with students who chose to undergo personal genotyping in the context of an elective genetics course. Ten medical and graduate students were interviewed before genotyping occurred, and at 2 weeks and 6 months after receiving their genotype results. Qualitative analysis of interview transcripts assessed the expectations and experiences of students who underwent personal genotyping, how they interpreted and applied their results; how the testing affected the quality of their learning during the course, and what were their perceived needs for support. Students stated that personal genotyping enhanced their engagement with the course content. Although students expressed skepticism over the clinical utility of some test results, they expressed significant enthusiasm immediately after receiving their personal genetic analysis, and were particularly interested in results such as drug response and carrier testing. However, few reported making behavioral changes or following up on specific results through a healthcare provider. Students did not report utilizing genetic counseling, despite feeling strongly that the 'general public' would need these services. In follow-up interviews, students exhibited poor recall on details of the consent and biobanking agreements, but expressed little regret over their decision to undergo genotyping. Students reported mining their raw genetic data, and conveyed a need for further consultation support in their exploration of genetic variants. Personal genotyping may improve students' self-reported motivation and engagement with course material. However, consultative support that

  5. Making Personalized Health Care Even More Personalized: Insights From Activities of the IOM Genomics Roundtable.

    Science.gov (United States)

    David, Sean P; Johnson, Samuel G; Berger, Adam C; Feero, W Gregory; Terry, Sharon F; Green, Larry A; Phillips, Robert L; Ginsburg, Geoffrey S

    2015-01-01

    Genomic research has generated much new knowledge into mechanisms of human disease, with the potential to catalyze novel drug discovery and development, prenatal and neonatal screening, clinical pharmacogenomics, more sensitive risk prediction, and enhanced diagnostics. Genomic medicine, however, has been limited by critical evidence gaps, especially those related to clinical utility and applicability to diverse populations. Genomic medicine may have the greatest impact on health care if it is integrated into primary care, where most health care is received and where evidence supports the value of personalized medicine grounded in continuous healing relationships. Redesigned primary care is the most relevant setting for clinically useful genomic medicine research. Taking insights gained from the activities of the Institute of Medicine (IOM) Roundtable on Translating Genomic-Based Research for Health, we apply lessons learned from the patient-centered medical home national experience to implement genomic medicine in a patient-centered, learning health care system. © 2015 Annals of Family Medicine, Inc.

  6. The role of disease characteristics in the ethical debate on personal genome testing.

    Science.gov (United States)

    Bunnik, Eline M; Schermer, Maartje Hn; Janssens, A Cecile J W

    2012-01-19

    Companies are currently marketing personal genome tests directly-to-consumer that provide genetic susceptibility testing for a range of multifactorial diseases simultaneously. As these tests comprise multiple risk analyses for multiple diseases, they may be difficult to evaluate. Insight into morally relevant differences between diseases will assist researchers, healthcare professionals, policy-makers and other stakeholders in the ethical evaluation of personal genome tests. In this paper, we identify and discuss four disease characteristics--severity, actionability, age of onset, and the somatic/psychiatric nature of disease--and show how these lead to specific ethical issues. By way of illustration, we apply this framework to genetic susceptibility testing for three diseases: type 2 diabetes, age-related macular degeneration and clinical depression. For these three diseases, we point out the ethical issues that are relevant to the question whether it is morally justifiable to offer genetic susceptibility testing to adults or to children or minors, and on what conditions. We conclude that the ethical evaluation of personal genome tests is challenging, for the ethical issues differ with the diseases tested for. An understanding of the ethical significance of disease characteristics will improve the ethical, legal and societal debate on personal genome testing.

  7. Revisiting Respect for Persons in Genomic Research

    Directory of Open Access Journals (Sweden)

    Debra J. H. Mathews

    2014-01-01

    Full Text Available The risks and benefits of research using large databases of personal information are evolving in an era of ubiquitous, internet-based data exchange. In addition, information technology has facilitated a shift in the relationship between individuals and their personal data, enabling increased individual control over how (and how much personal data are used in research, and by whom. This shift in control has created new opportunities to engage members of the public as partners in the research enterprise on more equal and transparent terms. Here, we consider how some of the technological advances driving and paralleling developments in genomics can also be used to supplement the practice of informed consent with other strategies to ensure that the research process as a whole honors the notion of respect for persons upon which human research subjects protections are premised. Further, we suggest that technological advances can help the research enterprise achieve a more thoroughgoing respect for persons than was possible when current policies governing human subject research were developed. Questions remain about the best way to revise policy to accommodate these changes.

  8. Using web services for linking genomic data to medical information systems.

    Science.gov (United States)

    Maojo, V; Crespo, J; de la Calle, G; Barreiro, J; Garcia-Remesal, M

    2007-01-01

    To develop a new perspective for biomedical information systems, regarding the introduction of ideas, methods and tools related to the new scenario of genomic medicine. Technological aspects related to the analysis and integration of heterogeneous clinical and genomic data include mapping clinical and genetic concepts, potential future standards or the development of integrated biomedical ontologies. In this clinicomics scenario, we describe the use of Web services technologies to improve access to and integrate different information sources. We give a concrete example of the use of Web services technologies: the OntoFusion project. Web services provide new biomedical informatics (BMI) approaches related to genomic medicine. Customized workflows will aid research tasks by linking heterogeneous Web services. Two significant examples of these European Commission-funded efforts are the INFOBIOMED Network of Excellence and the Advancing Clinico-Genomic Trials on Cancer (ACGT) integrated project. Supplying medical researchers and practitioners with omics data and biologists with clinical datasets can help to develop genomic medicine. BMI is contributing by providing the informatics methods and technological infrastructure needed for these collaborative efforts.

  9. Characterizing immunoglobulin repertoire from whole blood by a personal genome sequencer.

    Directory of Open Access Journals (Sweden)

    Fan Gao

    Full Text Available In human immune system, V(DJ recombination produces an enormously large repertoire of immunoglobulins (Ig so that they can tackle different antigens from bacteria, viruses and tumor cells. Several studies have demonstrated the utility of next-generation sequencers such as Roche 454 and Illumina Genome Analyzer to characterize the repertoire of immunoglobulins. However, these techniques typically require separation of B cell population from whole blood and require a few weeks for running the sequencers, so it may not be practical to implement them in clinical settings. Recently, the Ion Torrent personal genome sequencer has emerged as a tabletop personal genome sequencer that can be operated in a time-efficient and cost-effective manner. In this study, we explored the technical feasibility to use multiplex PCR for amplifying V(DJ recombination for IgH, directly from whole blood, then sequence the amplicons by the Ion Torrent sequencer. The whole process including data generation and analysis can be completed in one day. We tested the method in a pilot study on patients with benign, atypical and malignant meningiomas. Despite the noisy data, we were able to compare the samples by their usage frequencies of the V segment, as well as their somatic hypermutation rates. In summary, our study suggested that it is technically feasible to perform clinical monitoring of V(DJ recombination within a day by personal genome sequencers.

  10. wANNOVAR: annotating genetic variants for personal genomes via the web.

    Science.gov (United States)

    Chang, Xiao; Wang, Kai

    2012-07-01

    High-throughput DNA sequencing platforms have become widely available. As a result, personal genomes are increasingly being sequenced in research and clinical settings. However, the resulting massive amounts of variants data pose significant challenges to the average biologists and clinicians without bioinformatics skills. We developed a web server called wANNOVAR to address the critical needs for functional annotation of genetic variants from personal genomes. The server provides simple and intuitive interface to help users determine the functional significance of variants. These include annotating single nucleotide variants and insertions/deletions for their effects on genes, reporting their conservation levels (such as PhyloP and GERP++ scores), calculating their predicted functional importance scores (such as SIFT and PolyPhen scores), retrieving allele frequencies in public databases (such as the 1000 Genomes Project and NHLBI-ESP 5400 exomes), and implementing a 'variants reduction' protocol to identify a subset of potentially deleterious variants/genes. We illustrated how wANNOVAR can help draw biological insights from sequencing data, by analysing genetic variants generated on two Mendelian diseases. We conclude that wANNOVAR will help biologists and clinicians take advantage of the personal genome information to expedite scientific discoveries. The wANNOVAR server is available at http://wannovar.usc.edu, and will be continuously updated to reflect the latest annotation information.

  11. STORMSeq: An Open-Source, User-Friendly Pipeline for Processing Personal Genomics Data in the Cloud

    OpenAIRE

    Karczewski, Konrad J.; Fernald, Guy Haskin; Martin, Alicia R.; Snyder, Michael; Tatonetti, Nicholas P.; Dudley, Joel T.

    2014-01-01

    The increasing public availability of personal complete genome sequencing data has ushered in an era of democratized genomics. However, read mapping and variant calling software is constantly improving and individuals with personal genomic data may prefer to customize and update their variant calls. Here, we describe STORMSeq (Scalable Tools for Open-Source Read Mapping), a graphical interface cloud computing solution that does not require a parallel computing environment or extensive technic...

  12. Personal genome testing: Test characteristics to clarify the discourse on ethical, legal and societal issues

    Directory of Open Access Journals (Sweden)

    Janssens A Cecile JW

    2011-06-01

    Full Text Available Abstract Background As genetics technology proceeds, practices of genetic testing have become more heterogeneous: many different types of tests are finding their way to the public in different settings and for a variety of purposes. This diversification is relevant to the discourse on ethical, legal and societal issues (ELSI surrounding genetic testing, which must evolve to encompass these differences. One important development is the rise of personal genome testing on the basis of genetic profiling: the testing of multiple genetic variants simultaneously for the prediction of common multifactorial diseases. Currently, an increasing number of companies are offering personal genome tests directly to consumers and are spurring ELSI-discussions, which stand in need of clarification. This paper presents a systematic approach to the ELSI-evaluation of personal genome testing for multifactorial diseases along the lines of its test characteristics. Discussion This paper addresses four test characteristics of personal genome testing: its being a non-targeted type of testing, its high analytical validity, low clinical validity and problematic clinical utility. These characteristics raise their own specific ELSI, for example: non-targeted genetic profiling poses serious problems for information provision and informed consent. Questions about the quantity and quality of the necessary information, as well as about moral responsibilities with regard to the provision of information are therefore becoming central themes within ELSI-discussions of personal genome testing. Further, the current low level of clinical validity of genetic profiles raises questions concerning societal risks and regulatory requirements, whereas simultaneously it causes traditional ELSI-issues of clinical genetics, such as psychological and health risks, discrimination, and stigmatization, to lose part of their relevance. Also, classic notions of clinical utility are challenged by the

  13. The role of disease characteristics in the ethical debate on personal genome testing

    Directory of Open Access Journals (Sweden)

    Bunnik Eline M

    2012-01-01

    Full Text Available Abstract Background Companies are currently marketing personal genome tests directly-to-consumer that provide genetic susceptibility testing for a range of multifactorial diseases simultaneously. As these tests comprise multiple risk analyses for multiple diseases, they may be difficult to evaluate. Insight into morally relevant differences between diseases will assist researchers, healthcare professionals, policy-makers and other stakeholders in the ethical evaluation of personal genome tests. Discussion In this paper, we identify and discuss four disease characteristics - severity, actionability, age of onset, and the somatic/psychiatric nature of disease - and show how these lead to specific ethical issues. By way of illustration, we apply this framework to genetic susceptibility testing for three diseases: type 2 diabetes, age-related macular degeneration and clinical depression. For these three diseases, we point out the ethical issues that are relevant to the question whether it is morally justifiable to offer genetic susceptibility testing to adults or to children or minors, and on what conditions. Summary We conclude that the ethical evaluation of personal genome tests is challenging, for the ethical issues differ with the diseases tested for. An understanding of the ethical significance of disease characteristics will improve the ethical, legal and societal debate on personal genome testing.

  14. Attitudes towards Social Networking and Sharing Behaviors among Consumers of Direct-to-Consumer Personal Genomics.

    Science.gov (United States)

    Lee, Sandra Soo-Jin; Vernez, Simone L; Ormond, K E; Granovetter, Mark

    2013-10-14

    Little is known about how consumers of direct-to-consumer personal genetic services share personal genetic risk information. In an age of ubiquitous online networking and rapid development of social networking tools, understanding how consumers share personal genetic risk assessments is critical in the development of appropriate and effective policies. This exploratory study investigates how consumers share personal genetic information and attitudes towards social networking behaviors. Adult participants aged 23 to 72 years old who purchased direct-to-consumer genetic testing from a personal genomics company were administered a web-based survey regarding their sharing activities and social networking behaviors related to their personal genetic test results. 80 participants completed the survey; of those, 45% shared results on Facebook and 50.9% reported meeting or reconnecting with more than 10 other individuals through the sharing of their personal genetic information. For help interpreting test results, 70.4% turned to Internet websites and online sources, compared to 22.7% who consulted their healthcare providers. Amongst participants, 51.8% reported that they believe the privacy of their personal genetic information would be breached in the future. Consumers actively utilize online social networking tools to help them share and interpret their personal genetic information. These findings suggest a need for careful consideration of policy recommendations in light of the current ambiguity of regulation and oversight of consumer initiated sharing activities.

  15. Personalized Services Oriented towards Commercial Establishments

    Science.gov (United States)

    Marin Díaz, David; Rico Zuluaga, Alejandro; Carrillo-Ramos, Angela

    This paper presents the platform PlaSerEs, whose main objective is to provide information about the products y/o services offered by commercial establishments to their clients in a personalized way. This platform is structured in four layers: i) the adaptation layer, composed of four modules: the one of the context, the one of the access device, the one of the user and the one of the wireless connection. The latter is one of the main contributions of this work. ii) The general services layer, iii) the personalized services layer and iv) the application layer. In order to validate and to evaluate how PlaSerEs works, we developed a functional prototype for a restaurant.

  16. Relationships Between Service Personal Values, Service Value, Satisfaction, and Loyalty: A Study Regarding Services of Private and State Hospitals in Turkey

    Directory of Open Access Journals (Sweden)

    Metin Argan

    2017-06-01

    Full Text Available Service and value are the two inseparable concepts in experiential service environment. Service personal value is a concept that is subjectively assessed from a consumer perspective, and is associated with service value, consumer satisfaction and loyalty. In this context, the purpose of this study was to examine the relationships between services personal values, service value, satisfaction, and loyalty. Data were collected from persons (996 receiving services from private hospitals and state hospitals using convenience sampling method. The scales of service personal values, service value, satisfaction and loyalty were adapted from literature. Confirmatory factor analysis (CFA was used to investigate validity and reliability of the scales. Then, a structural equation model (SEM was developed and tested using data with Lisrel 8.80 software. The results of the study indicate significant relationships between services personal values, service value, satisfaction, and loyalty. The results of the study have significant implications as to how well private hospital managers design strategies of health service, satisfaction, and loyalty.

  17. Aftermath of bustamante attack on genomic beacon service.

    Science.gov (United States)

    Aziz, Md Momin Al; Ghasemi, Reza; Waliullah, Md; Mohammed, Noman

    2017-07-26

    With the enormous need for federated eco-system for holding global genomic and clinical data, Global Alliance for Genomic and Health (GA4GH) has created an international website called beacon service which allows a researcher to find out whether a specific dataset can be utilized to his or her research beforehand. This simple webservice is quite useful as it allows queries like whether a certain position of a target chromosome has a specific nucleotide. However, the increased integration of individuals genomic data into clinical practice and research raised serious privacy concern. Though the answer of such queries are yes or no in Bacon network, it results in serious privacy implication as demonstrated in a recent work from Shringarpure and Bustamante. In their attack model, the authors demonstrated that with a limited number of queries, presence of an individual in any dataset can be determined. We propose two lightweight algorithms (based on randomized response) which captures the efficacy while preserving the privacy of the participants in a genomic beacon service. We also elaborate the strength and weakness of the attack by explaining some of their statistical and mathematical models using real world genomic database. We extend their experimental simulations for different adversarial assumptions and parameters. We experimentally evaluated the solutions on the original attack model with different parameters for better understanding of the privacy and utility tradeoffs provided by these two methods. Also, the statistical analysis further elaborates the different aspects of the prior attack which leads to a better risk management for the participants in a beacon service. The differentially private and lightweight solutions discussed here will make the attack much difficult to succeed while maintaining the fundamental motivation of beacon database network.

  18. Willingness to participate in genomics research and desire for personal results among underrepresented minority patients: a structured interview study.

    Science.gov (United States)

    Sanderson, Saskia C; Diefenbach, Michael A; Zinberg, Randi; Horowitz, Carol R; Smirnoff, Margaret; Zweig, Micol; Streicher, Samantha; Jabs, Ethylin Wang; Richardson, Lynne D

    2013-10-01

    Patients from traditionally underrepresented communities need to be involved in discussions around genomics research including attitudes towards participation and receiving personal results. Structured interviews, including open-ended and closed-ended questions, were conducted with 205 patients in an inner-city hospital outpatient clinic: 48 % of participants self-identified as Black or African American, 29 % Hispanic, 10 % White; 49 % had an annual household income of personal results to be returned was not mentioned, 82 % of participants were willing to participate in genomics research. Reasons for willingness fell into four themes: altruism; benefit to family members; personal health benefit; personal curiosity and improving understanding. Reasons for being unwilling fell into five themes: negative perception of research; not personally relevant; negative feelings about procedures (e.g., blood draws); practical barriers; and fear of results. Participants were more likely to report that they would participate in genomics research if personal results were offered than if they were not offered (89 vs. 62 % respectively, p personal genomic risk results for cancer, heart disease and type 2 diabetes than obesity (89, 89, 91, 80 % respectively, all p personal results was disease-specific worry. There was considerable willingness to participate in and desire for personal results from genomics research in this sample of predominantly low-income, Hispanic and African American patients. When returning results is not practical, or even when it is, alternatively or additionally providing generic information about genomics and health may also be a valuable commodity to underrepresented minority and other populations considering participating in genomics research.

  19. Attitudes towards Social Networking and Sharing Behaviors among Consumers of Direct-to-Consumer Personal Genomics

    Directory of Open Access Journals (Sweden)

    Mark Granovetter

    2013-10-01

    Full Text Available Little is known about how consumers of direct-to-consumer personal genetic services share personal genetic risk information. In an age of ubiquitous online networking and rapid development of social networking tools, understanding how consumers share personal genetic risk assessments is critical in the development of appropriate and effective policies. This exploratory study investigates how consumers share personal genetic information and attitudes towards social networking behaviors. Methods: Adult participants aged 23 to 72 years old who purchased direct-to-consumer genetic testing from a personal genomics company were administered a web-based survey regarding their sharing activities and social networking behaviors related to their personal genetic test results. Results: 80 participants completed the survey; of those, 45% shared results on Facebook and 50.9% reported meeting or reconnecting with more than 10 other individuals through the sharing of their personal genetic information. For help interpreting test results, 70.4% turned to Internet websites and online sources, compared to 22.7% who consulted their healthcare providers. Amongst participants, 51.8% reported that they believe the privacy of their personal genetic information would be breached in the future. Conclusion: Consumers actively utilize online social networking tools to help them share and interpret their personal genetic information. These findings suggest a need for careful consideration of policy recommendations in light of the current ambiguity of regulation and oversight of consumer initiated sharing activities.

  20. 77 FR 2735 - National Human Genome Research Institute; Notice of Meetings

    Science.gov (United States)

    2012-01-19

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... personal privacy. Name of Committee: National Advisory Council for Human Genome Research. Date: February 13... Extramural Research National Human Genome Research Institute, 5635 Fishers Lane, Suite 4076, MSC 9305...

  1. 75 FR 51828 - National Human Genome Research Institute; Notice of Meetings

    Science.gov (United States)

    2010-08-23

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... personal privacy. Name of Committee: National Advisory Council for Human Genome Research. Date: February 7... Research, National Human Genome Research Institute, 5635 Fishers Lane, Suite 4076, MSC 9305, Bethesda, MD...

  2. 77 FR 59933 - National Human Genome Research Institute; Notice of Closed Meetings

    Science.gov (United States)

    2012-10-01

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... clearly unwarranted invasion of personal privacy. Name of Committee: National Human Genome Research....D., Scientific Review Officer, Scientific Review Branch, National Human Genome Research Institute...

  3. 76 FR 29772 - National Human Genome Research Institute; Notice of Closed Meetings

    Science.gov (United States)

    2011-05-23

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... clearly unwarranted invasion of personal privacy. Name of Committee: National Human Genome Research... of Scientific Review, National Human Genome Research Institute, National Institutes of Health...

  4. 77 FR 5035 - National Human Genome Research Institute; Notice of Closed Meetings

    Science.gov (United States)

    2012-02-01

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... clearly unwarranted invasion of personal privacy. Name of Committee: National Human Genome Research... Officer, Scientific Review Branch, National Human Genome Research Institute, National Institutes of Health...

  5. 77 FR 58402 - National Human Genome Research Institute; Notice of Closed Meetings

    Science.gov (United States)

    2012-09-20

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... clearly unwarranted invasion of personal privacy. Name of Committee: National Human Genome Research...: To review and evaluate grant applications. Place: National Human Genome Research Institute, 5635...

  6. 78 FR 55752 - National Human Genome Research Institute; Notice of Closed Meetings

    Science.gov (United States)

    2013-09-11

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... clearly unwarranted invasion of personal privacy. Name of Committee: National Human Genome Research.... Pozzatti, Ph.D., Scientific Review Officer, Scientific Review Branch, National Human Genome Research...

  7. 78 FR 56905 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2013-09-16

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... clearly unwarranted invasion of personal privacy. Name of Committee: National Human Genome Research....m. Agenda: To review and evaluate grant applications. Place: National Human Genome Research...

  8. Protecting and Evaluating Genomic Privacy in Medical Tests and Personalized Medicine

    OpenAIRE

    Ayday, Erman; Raisaro, Jean Louis; Rougemont, Jacques; Hubaux, Jean-Pierre

    2013-01-01

    In this paper, we propose privacy-enhancing technologies for medical tests and personalized medicine methods that use patients' genomic data. Focusing on genetic disease-susceptibility tests, we develop a new architecture (between the patient and the medical unit) and propose a "privacy-preserving disease susceptibility test" (PDS) by using homomorphic encryption and proxy re-encryption. Assuming the whole genome sequencing to be done by a certified institution, we propose to store patients' ...

  9. 22 CFR 92.93 - Notarial services or authentications connected with service of process by other persons.

    Science.gov (United States)

    2010-04-01

    ... with service of process by other persons. 92.93 Section 92.93 Foreign Relations DEPARTMENT OF STATE... or authentications connected with service of process by other persons. An officer of the Foreign Service may administer an oath to a person making an affidavit to the effect that legal process has ben...

  10. 77 FR 64816 - National Human Genome Research Institute; Notice of Meeting

    Science.gov (United States)

    2012-10-23

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome..., National Human Genome Research Institute. The meeting will be open to the public as indicated below, with... invasion of personal privacy. Name of Committee: Board of Scientific Counselors, National Human Genome...

  11. 76 FR 65204 - National Human Genome Research Institute; Notice of Meeting

    Science.gov (United States)

    2011-10-20

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome..., National Human Genome Research Institute. The meeting will be open to the public as indicated below, with... invasion of personal privacy. Name of Committee: Board of Scientific Counselors, National Human Genome...

  12. 75 FR 60467 - National Human Genome Research Institute; Notice of Meeting

    Science.gov (United States)

    2010-09-30

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome..., National Human Genome Research Institute. The meeting will be open to the public as indicated below, with... invasion of personal privacy. Name of Committee: Board of Scientific Counselors, National Human Genome...

  13. Personalized Boutique Service: Critical to Academic Library Success?

    Science.gov (United States)

    Tilley, Elizabeth

    2013-01-01

    An academic library that focuses on delivering a personalized service is examined within the context of the boutique library model. It is suggested that a critical success factor in adopting a personalized, boutique-style service is acquiring knowledge and insight of our users. This, together with appropriate evaluation, will assist with providing…

  14. 75 FR 8374 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2010-02-24

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... unwarranted invasion of personal privacy. Name of Committee: National Human Genome Research Institute Special... Officer, Scientific Review Branch, National Human Genome Research Institute, National Institutes of Health...

  15. 78 FR 64222 - National Human Genome Research Institute; Notice of Closed Meetings

    Science.gov (United States)

    2013-10-28

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... clearly unwarranted invasion of personal privacy. Name of Committee: National Human Genome Research... Review, National Human Genome Research Institute, National Institutes of Health, Bethesda, MD 20892, 301...

  16. 77 FR 60706 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2012-10-04

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... unwarranted invasion of personal privacy. Name of Committee: National Human Genome Research Institute Special.... Nakamura, Ph.D., Scientific Review Officer, Scientific Review Branch, National Human Genome Research...

  17. 77 FR 20646 - National Human Genome Research Institute; Notice of Closed Meetings

    Science.gov (United States)

    2012-04-05

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... clearly unwarranted invasion of personal privacy. Name of Committee: National Human Genome Research.... Agenda: To review and evaluate grant applications. Place: National Human Genome Research Institute, 5635...

  18. 78 FR 20933 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2013-04-08

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... unwarranted invasion of personal privacy. Name of Committee: National Human Genome Research Institute Special... review and evaluate grant applications. Place: National Human Genome Research Institute, Room 3055, 5635...

  19. 76 FR 22112 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2011-04-20

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... unwarranted invasion of personal privacy. Name of Committee: National Human Genome Research Institute Special....nih.gov . (Catalogue of Federal Domestic Assistance Program Nos. 93.172, Human Genome Research...

  20. 78 FR 31953 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2013-05-28

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... unwarranted invasion of personal privacy. Name of Committee: National Human Genome Research Institute Special... review and evaluate grant applications. Place: National Human Genome Research Institute, 3rd Floor...

  1. 75 FR 10488 - National Human Genome Research Institute; Notice of Closed Meetings

    Science.gov (United States)

    2010-03-08

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... clearly unwarranted invasion of personal privacy. Name of Committee: National Human Genome Research...- 4280, [email protected]gov . Name of Committee: National Human Genome Research Institute Special...

  2. 76 FR 65204 - National Human Genome Research Institute; Notice of Closed Meetings

    Science.gov (United States)

    2011-10-20

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... constitute a clearly unwarranted invasion of personal privacy. Name of Committee: National Human Genome... Review Officer, Scientific Review Branch, National Human Genome Research Institute, 5635 Fishers Lane...

  3. 75 FR 8373 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2010-02-24

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... unwarranted invasion of personal privacy. Name of Committee: National Human Genome Research Institute [email protected] . (Catalogue of Federal Domestic Assistance Program Nos. 93.172, Human Genome Research...

  4. 77 FR 12604 - National Human Genome Research Institute; Notice of Closed Meetings

    Science.gov (United States)

    2012-03-01

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... clearly unwarranted invasion of personal privacy. >Name of Committee: National Human Genome Research... review and evaluate contract proposals. Place: National Human Genome Reseach Institute, 5635 Fishers Lane...

  5. 77 FR 22332 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2012-04-13

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... unwarranted invasion of personal privacy. Name of Committee: National Human Genome Research Institute Special.... Agenda: To review and evaluate grant applications. Place: National Human Genome Research Institute, 5635...

  6. 76 FR 3642 - National Human Genome Research Institute; Notice of Closed Meetings

    Science.gov (United States)

    2011-01-20

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... clearly unwarranted invasion of personal privacy. Name of Committee: National Human Genome Research....nih.gov . Name of Committee: National Human Genome Research Institute Special Emphasis Panel eMERGE...

  7. 76 FR 17930 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2011-03-31

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... unwarranted invasion of personal privacy. Name of Committee: National Human Genome Research Institute Special... Review Officer, Scientific Review Branch, National Human Genome Research Institute, 5635 Fishers Lane...

  8. 75 FR 52537 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2010-08-26

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... unwarranted invasion of personal privacy. Name of Committee: National Human Genome Research Institute Initial....nih.gov . (Catalogue of Federal Domestic Assistance Program Nos. 93.172, Human Genome Research...

  9. 76 FR 58023 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2011-09-19

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... unwarranted invasion of personal privacy. Name of Committee: National Human Genome Research Institute Initial..., Scientific Review Officer, Office of Scientific Review, National Human Genome Research Institute, National...

  10. 76 FR 28056 - National Human Genome Research Institute; Notice of Closed Meetings

    Science.gov (United States)

    2011-05-13

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... clearly unwarranted invasion of personal privacy. Name of Committee: National Human Genome Research... D. Nakamura, PhD, Scientific Review Officer, Office of Scientific Review, National Human Genome...

  11. 75 FR 2148 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2010-01-14

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... unwarranted invasion of personal privacy. Name of Committee: National Human Genome Research Institute Initial....nih.gov . (Catalogue of Federal Domestic Assistance Program Nos. 93.172, Human Genome Research...

  12. 77 FR 28888 - National Human Genome Research Institute Notice of Closed Meeting

    Science.gov (United States)

    2012-05-16

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... unwarranted invasion of personal privacy. Name of Committee: National Human Genome Research Institute Initial...: To review and evaluate grant applications. Place: National Human Genome Research Institute, 3635...

  13. 78 FR 9707 - National Human Genome Research Institute; Notice of Closed Meetings

    Science.gov (United States)

    2013-02-11

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... clearly unwarranted invasion of personal privacy. Name of Committee: National Human Genome Research... Officer, Scientific Review Branch, National Human Genome Research Institute, 5635 Fishers Lane, Suite 4076...

  14. 77 FR 71604 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2012-12-03

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... unwarranted invasion of personal privacy. Name of Committee: National Human Genome Research Institute Special..., Scientific Review Branch, National Human Genome Research Institute, National Institutes of Health, 5635...

  15. 76 FR 5390 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2011-01-31

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... unwarranted invasion of personal privacy. Place: National Human Genome Research Institute Special Emphasis... Officer, Scientific Review Branch, National Human Genome Research Institute, 5635 Fishers Lane, Suite 4076...

  16. 75 FR 32957 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2010-06-10

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... unwarranted invasion of personal privacy. Name of Committee: National Human Genome Research Institute Special... funding cycle. (Catalogue of Federal Domestic Assistance Program Nos. 93.172, Human Genome Research...

  17. 78 FR 14806 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2013-03-07

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... unwarranted invasion of personal privacy. Name of Committee: National Human Genome Research Institute Special... p.m. Agenda: To review and evaluate grant applications. Place: National Human Genome Research...

  18. Privacy Challenges of Genomic Big Data.

    Science.gov (United States)

    Shen, Hong; Ma, Jian

    2017-01-01

    With the rapid advancement of high-throughput DNA sequencing technologies, genomics has become a big data discipline where large-scale genetic information of human individuals can be obtained efficiently with low cost. However, such massive amount of personal genomic data creates tremendous challenge for privacy, especially given the emergence of direct-to-consumer (DTC) industry that provides genetic testing services. Here we review the recent development in genomic big data and its implications on privacy. We also discuss the current dilemmas and future challenges of genomic privacy.

  19. Direct-to-Consumer Genetic Testing and Personal Genomics Services: A Review of Recent Empirical Studies

    Science.gov (United States)

    Ostergren, Jenny

    2013-01-01

    Direct-to-consumer genetic testing (DTC-GT) has sparked much controversy and undergone dramatic changes in its brief history. Debates over appropriate health policies regarding DTC-GT would benefit from empirical research on its benefits, harms, and limitations. We review the recent literature (2011-present) and summarize findings across (1) content analyses of DTC-GT websites, (2) studies of consumer perspectives and experiences, and (3) surveys of relevant health care providers. Findings suggest that neither the health benefits envisioned by DTC-GT proponents (e.g., significant improvements in positive health behaviors) nor the worst fears expressed by its critics (e.g., catastrophic psychological distress and misunderstanding of test results, undue burden on the health care system) have materialized to date. However, research in this area is in its early stages and possesses numerous key limitations. We note needs for future studies to illuminate the impact of DTC-GT and thereby guide practice and policy regarding this rapidly evolving approach to personal genomics. PMID:24058877

  20. Os riscos genômicos e a responsabilidade pessoal em saúde Genomic risk and personal responsibility in health

    Directory of Open Access Journals (Sweden)

    Luis David Castiel

    2006-03-01

    Full Text Available With the advent of genomic research, a new category of risk has emerged-genetic risk-from which an individual cannot be separated. Among the outcomes of this model is a discussion on personal accountability, according to which an individual may both be exempted from events related to certain states of health ("blame it on the genes" or be blamed for those events ("transmitter of disease". In addition, the search for genes to explain disease erases the line between what is normal and what is pathological, with a growing tendency towards considering individuals with no or very mild clinical manifestations as being "ill." The great emphasis on genomics may lead to both an exaggerated attention to genetics rather than social and environmental factors and to a reductionism that favors sociobiological explanations for human behavior. In addition, in this scenario, the right to information may paradoxically stimulate some to consume goods and services in order to prevent a hypothetical illness that could occur at some point in time as a result of genetic predisposition-goods and services that may not be available to everyone. It is essential that such issues be considered with the same urgency with which the genomic paradigm is being developed.

  1. 76 FR 3917 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2011-01-21

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... unwarranted invasion of personal privacy. Name of Committee: National Human Genome Research Institute Special... Branch, National Human Genome Research Institute, 5635 Fishers Lane, Suite 4076, MSC 9306, Rockville, MD...

  2. 75 FR 56115 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2010-09-15

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... unwarranted invasion of personal privacy. Name of Committee: National Human Genome Research Institute Special... Federal Domestic Assistance Program Nos. 93.172, Human Genome Research, National Institutes of Health, HHS...

  3. 76 FR 3643 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2011-01-20

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... unwarranted invasion of personal privacy. Name of Committee: National Human Genome Research Institute Initial... . (Catalogue of Federal Domestic Assistance Program Nos. 93.172, Human Genome Research, National Institutes of...

  4. 78 FR 24223 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2013-04-24

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... unwarranted invasion of personal privacy. Name of Committee: National Human Genome Research Institute Initial...: To review and evaluate grant applications. Place: National Human Genome Research Institute, 3rd floor...

  5. 76 FR 35224 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2011-06-16

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome...). Contact Person: Camilla E. Day, PhD, Scientific Review Officer, CIR, National Human Genome Research..., [email protected] . (Catalogue of Federal Domestic Assistance Program Nos. 93.172, Human Genome Research...

  6. 76 FR 22407 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2011-04-21

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... unwarranted invasion of personal privacy. Name of Committee: National Human Genome Research Institute Special.... (Catalogue of Federal Domestic Assistance Program Nos. 93.172, Human Genome Research, National Institutes of...

  7. 75 FR 48977 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2010-08-12

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome.... Contact Person: Camilla E. Day, PhD, Scientific Review Officer, CIDR, National Human Genome Research..., [email protected] . (Catalogue of Federal Domestic Assistance Program Nos. 93.172, Human Genome Research...

  8. 75 FR 26762 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2010-05-12

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... unwarranted invasion of personal privacy. Name of Committee: National Human Genome Research Institute Initial... . (Catalogue of Federal Domestic Assistance Program Nos. 93.172, Human Genome Research, National Institutes of...

  9. 75 FR 35821 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2010-06-23

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... Person: Camilla E. Day, PhD, Scientific Review Officer, CIDR, National Human Genome Research [email protected] . (Catalogue of Federal Domestic Assistance Program Nos. 93.172, Human Genome Research...

  10. 78 FR 47715 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2013-08-06

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... Person: Camilla E. Day, Ph.D., Scientific Review Officer, CIDR, National Human Genome Research [email protected] . (Catalogue of Federal Domestic Assistance Program Nos. 93.172, Human Genome Research...

  11. 77 FR 31863 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2012-05-30

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... unwarranted invasion of personal privacy. Name of Committee: National Human Genome Research Institute Special..., Human Genome Research, National Institutes of Health, HHS) Dated: May 22, 2012. Jennifer S. Spaeth...

  12. 76 FR 79199 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2011-12-21

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome.... Contact Person: Camilla E. Day, Ph.D., Scientific Review Officer, CIDR, National Human Genome Research..., [email protected] . (Catalogue of Federal Domestic Assistance Program Nos. 93.172, Human Genome Research...

  13. 76 FR 66731 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2011-10-27

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... unwarranted invasion of personal privacy. Name of Committee: National Human Genome Research Institute Special... Program Nos. 93.172, Human Genome Research, National Institutes of Health, HHS) Dated: October 21, 2011...

  14. 76 FR 36930 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2011-06-23

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... unwarranted invasion of personal privacy. Name of Committee: National Human Genome Research Institute Special..., Human Genome Research, National Institutes of Health, HHS) Dated: June 17, 2011. Jennifer S. Spaeth...

  15. 77 FR 61770 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2012-10-11

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... unwarranted invasion of personal privacy. Name of Committee: National Human Genome Research Institute Special... Assistance Program Nos. 93.172, Human Genome Research, National Institutes of Health, HHS) [[Page 61771...

  16. 76 FR 63932 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2011-10-14

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... unwarranted invasion of personal privacy. Name of Committee: National Human Genome Research Institute Special... Assistance Program Nos. 93.172, Human Genome Research, National Institutes of Health, HHS) Dated: October 7...

  17. VAT: a computational framework to functionally annotate variants in personal genomes within a cloud-computing environment.

    Science.gov (United States)

    Habegger, Lukas; Balasubramanian, Suganthi; Chen, David Z; Khurana, Ekta; Sboner, Andrea; Harmanci, Arif; Rozowsky, Joel; Clarke, Declan; Snyder, Michael; Gerstein, Mark

    2012-09-01

    The functional annotation of variants obtained through sequencing projects is generally assumed to be a simple intersection of genomic coordinates with genomic features. However, complexities arise for several reasons, including the differential effects of a variant on alternatively spliced transcripts, as well as the difficulty in assessing the impact of small insertions/deletions and large structural variants. Taking these factors into consideration, we developed the Variant Annotation Tool (VAT) to functionally annotate variants from multiple personal genomes at the transcript level as well as obtain summary statistics across genes and individuals. VAT also allows visualization of the effects of different variants, integrates allele frequencies and genotype data from the underlying individuals and facilitates comparative analysis between different groups of individuals. VAT can either be run through a command-line interface or as a web application. Finally, in order to enable on-demand access and to minimize unnecessary transfers of large data files, VAT can be run as a virtual machine in a cloud-computing environment. VAT is implemented in C and PHP. The VAT web service, Amazon Machine Image, source code and detailed documentation are available at vat.gersteinlab.org.

  18. Physician Personal Services Contract Enforceability: The Influence of the Thirteenth Amendment.

    Science.gov (United States)

    Fasko, Steven A; Kerr, Bernard J; Alvarez, M Raymond; Westrum, Andrew

    We explore the influence of the Thirteenth Amendment to the US Constitution on the enforceability of personal services contracts for physicians. This influence extends from the ambiguous definition to the legal interpretation of personal services contracts. The courts have struggled with determining contracts to be a personal service and whether to grant injunctions for continued performance. The award or denial of damages due to a breach of contract is vested in these enforceability complications. Because of the Thirteenth Amendment's influence, courts and contracting parties will continue to struggle with physician personal services contract enforceability; although other points of view may exist. Possible solutions are offered for health care contract managers dealing with challenges attributable to physician personal services contracts.

  19. STORMSeq: an open-source, user-friendly pipeline for processing personal genomics data in the cloud.

    Science.gov (United States)

    Karczewski, Konrad J; Fernald, Guy Haskin; Martin, Alicia R; Snyder, Michael; Tatonetti, Nicholas P; Dudley, Joel T

    2014-01-01

    The increasing public availability of personal complete genome sequencing data has ushered in an era of democratized genomics. However, read mapping and variant calling software is constantly improving and individuals with personal genomic data may prefer to customize and update their variant calls. Here, we describe STORMSeq (Scalable Tools for Open-Source Read Mapping), a graphical interface cloud computing solution that does not require a parallel computing environment or extensive technical experience. This customizable and modular system performs read mapping, read cleaning, and variant calling and annotation. At present, STORMSeq costs approximately $2 and 5-10 hours to process a full exome sequence and $30 and 3-8 days to process a whole genome sequence. We provide this open-access and open-source resource as a user-friendly interface in Amazon EC2.

  20. 76 FR 66076 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2011-10-25

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... Call). Contact Person: Camilla E. Day, PhD, Scientific Review Officer, CIDR, National Human Genome... Assistance Program Nos. 93.172, Human Genome Research, National Institutes of Health, HHS) Dated: October 19...

  1. 78 FR 61851 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2013-10-04

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... unwarranted invasion of personal privacy. Name of Committee: National Human Genome Research Institute Special... a.m. to 4:00 p.m. Agenda: To review and evaluate grant applications. Place: National Human Genome...

  2. 75 FR 80509 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2010-12-22

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... Call). Contact Person: Camilla E. Day, PhD, Scientific Review Officer, CIDR, National Human Genome... Assistance Program Nos. 93.172, Human Genome Research, National Institutes of Health, HHS) Dated: December 16...

  3. Matching phenotypes to whole genomes: Lessons learned from four iterations of the personal genome project community challenges.

    Science.gov (United States)

    Cai, Binghuang; Li, Biao; Kiga, Nikki; Thusberg, Janita; Bergquist, Timothy; Chen, Yun-Ching; Niknafs, Noushin; Carter, Hannah; Tokheim, Collin; Beleva-Guthrie, Violeta; Douville, Christopher; Bhattacharya, Rohit; Yeo, Hui Ting Grace; Fan, Jean; Sengupta, Sohini; Kim, Dewey; Cline, Melissa; Turner, Tychele; Diekhans, Mark; Zaucha, Jan; Pal, Lipika R; Cao, Chen; Yu, Chen-Hsin; Yin, Yizhou; Carraro, Marco; Giollo, Manuel; Ferrari, Carlo; Leonardi, Emanuela; Tosatto, Silvio C E; Bobe, Jason; Ball, Madeleine; Hoskins, Roger A; Repo, Susanna; Church, George; Brenner, Steven E; Moult, John; Gough, Julian; Stanke, Mario; Karchin, Rachel; Mooney, Sean D

    2017-09-01

    The advent of next-generation sequencing has dramatically decreased the cost for whole-genome sequencing and increased the viability for its application in research and clinical care. The Personal Genome Project (PGP) provides unrestricted access to genomes of individuals and their associated phenotypes. This resource enabled the Critical Assessment of Genome Interpretation (CAGI) to create a community challenge to assess the bioinformatics community's ability to predict traits from whole genomes. In the CAGI PGP challenge, researchers were asked to predict whether an individual had a particular trait or profile based on their whole genome. Several approaches were used to assess submissions, including ROC AUC (area under receiver operating characteristic curve), probability rankings, the number of correct predictions, and statistical significance simulations. Overall, we found that prediction of individual traits is difficult, relying on a strong knowledge of trait frequency within the general population, whereas matching genomes to trait profiles relies heavily upon a small number of common traits including ancestry, blood type, and eye color. When a rare genetic disorder is present, profiles can be matched when one or more pathogenic variants are identified. Prediction accuracy has improved substantially over the last 6 years due to improved methodology and a better understanding of features. © 2017 Wiley Periodicals, Inc.

  4. How Well Do Customers of Direct-to-Consumer Personal Genomic Testing Services Comprehend Genetic Test Results? Findings from the Impact of Personal Genomics Study.

    Science.gov (United States)

    Ostergren, Jenny E; Gornick, Michele C; Carere, Deanna Alexis; Kalia, Sarah S; Uhlmann, Wendy R; Ruffin, Mack T; Mountain, Joanna L; Green, Robert C; Roberts, J Scott

    2015-01-01

    To assess customer comprehension of health-related personal genomic testing (PGT) results. We presented sample reports of genetic results and examined responses to comprehension questions in 1,030 PGT customers (mean age: 46.7 years; 59.9% female; 79.0% college graduates; 14.9% non-White; 4.7% of Hispanic/Latino ethnicity). Sample reports presented a genetic risk for Alzheimer's disease and type 2 diabetes, carrier screening summary results for >30 conditions, results for phenylketonuria and cystic fibrosis, and drug response results for a statin drug. Logistic regression was used to identify correlates of participant comprehension. Participants exhibited high overall comprehension (mean score: 79.1% correct). The highest comprehension (range: 81.1-97.4% correct) was observed in the statin drug response and carrier screening summary results, and lower comprehension (range: 63.6-74.8% correct) on specific carrier screening results. Higher levels of numeracy, genetic knowledge, and education were significantly associated with greater comprehension. Older age (≥ 60 years) was associated with lower comprehension scores. Most customers accurately interpreted the health implications of PGT results; however, comprehension varied by demographic characteristics, numeracy and genetic knowledge, and types and format of the genetic information presented. Results suggest a need to tailor the presentation of PGT results by test type and customer characteristics. © 2015 S. Karger AG, Basel.

  5. STORMSeq: an open-source, user-friendly pipeline for processing personal genomics data in the cloud.

    Directory of Open Access Journals (Sweden)

    Konrad J Karczewski

    Full Text Available The increasing public availability of personal complete genome sequencing data has ushered in an era of democratized genomics. However, read mapping and variant calling software is constantly improving and individuals with personal genomic data may prefer to customize and update their variant calls. Here, we describe STORMSeq (Scalable Tools for Open-Source Read Mapping, a graphical interface cloud computing solution that does not require a parallel computing environment or extensive technical experience. This customizable and modular system performs read mapping, read cleaning, and variant calling and annotation. At present, STORMSeq costs approximately $2 and 5-10 hours to process a full exome sequence and $30 and 3-8 days to process a whole genome sequence. We provide this open-access and open-source resource as a user-friendly interface in Amazon EC2.

  6. Genome-wide Association Study of Personality Traits in the Long Life Family Study

    Directory of Open Access Journals (Sweden)

    Harold T Bae

    2013-05-01

    Full Text Available Personality traits have been shown to be associated with longevity and healthy aging. In order to discover novel genetic modifiers associated with personality traits as related with longevity, we performed a genome-wide association study (GWAS on personality factors assessed by NEO-FFI in individuals enrolled in the Long Life Family Study (LLFS, a study of 583 families (N up to 4595 with clustering for longevity in the United States and Denmark. Three SNPs, in almost perfect LD, associated with agreeableness reached genome-wide significance (p<10-8 and replicated in an additional sample of 1279 LLFS subjects, although one (rs9650241 failed to replicate and the other two were not available in two independent replication cohorts, the Baltimore Longitudinal Study of Aging and the New England Centenarian Study. Based on 10,000,000 permutations, the empirical p-value of 2X10-7 was observed for the genome-wide significant SNPs. Seventeen SNPs that reached marginal statistical significance in the two previous GWASs (p-value < 10-4 and 10-5, were also marginally significantly associated in this study (p-value < 0.05, although none of the associations passed the Bonferroni correction. In addition, we tested age-by-SNP interactions and found some significant associations. Since scores of personality traits in LLFS subjects change in the oldest ages, and genetic factors outweigh environmental factors to achieve extreme ages, these age-by-SNP interactions could be a proxy for complex gene-gene interactions affecting personality traits and longevity.

  7. Re-examining the Gene in Personalized Genomics

    Science.gov (United States)

    Bartol, Jordan

    2013-10-01

    Personalized genomics companies (PG; also called `direct-to-consumer genetics') are businesses marketing genetic testing to consumers over the Internet. While much has been written about these new businesses, little attention has been given to their roles in science communication. This paper provides an analysis of the gene concept presented to customers and the relation between the information given and the science behind PG. Two quite different gene concepts are present in company rhetoric, but only one features in the science. To explain this, we must appreciate the delicate tension between PG, academic science, public expectation, and market forces.

  8. Experienced ethical issues of personalized data-mined media services

    DEFF Research Database (Denmark)

    Sørensen, Jannick Kirk

    2008-01-01

    This tentative PhD project description concerns the ethnographic examination of users’ experience of privacy issues and usability related to personalized data mined (web-) services for media content.......This tentative PhD project description concerns the ethnographic examination of users’ experience of privacy issues and usability related to personalized data mined (web-) services for media content....

  9. Personalizing knowledge delivery services: a conceptual framework

    Science.gov (United States)

    Majchrzak, Ann; Chelleppa, Ramnath K.; Cooper, Lynne P.; Hars, Alexander

    2003-01-01

    Consistent with the call of the Minnesota Symposium for new theory in knowledge management, we offer a new conceptualization of Knowledge Management Systems (KMS) as a portfolio of personalized knowledge delivery services. Borrowing from research on online consumer behavior, we describe the challenges imposed by personalized knowledge delivery services, and suggest design parameters that can help to overcome these challenges. We develop our design constructs through a set of hypotheses and discuss the research implications of our new conceptualization. Finally, we describe practical implications suggested by our conceptualization - practical suggestions that we hope to gain some experience with as part of an ongoing action research project at our partner organization.

  10. Personalized Whole-Cell Kinetic Models of Metabolism for Discovery in Genomics and Pharmacodynamics

    DEFF Research Database (Denmark)

    Bordbar, Aarash; McCloskey, Douglas; Zielinski, Daniel C

    2015-01-01

    Understanding individual variation is fundamental to personalized medicine. Yet interpreting complex phenotype data, such as multi-compartment metabolomic profiles, in the context of genotype data for an individual is complicated by interactions within and between cells and remains an unresolved...... challenge. Here, we constructed multi-omic, data-driven, personalized whole-cell kinetic models of erythrocyte metabolism for 24 healthy individuals based on fasting-state plasma and erythrocyte metabolomics and whole-genome genotyping. We show that personalized kinetic rate constants, rather than...

  11. The Personal Genome Project Canada: findings from whole genome sequences of the inaugural 56 participants.

    Science.gov (United States)

    Reuter, Miriam S; Walker, Susan; Thiruvahindrapuram, Bhooma; Whitney, Joe; Cohn, Iris; Sondheimer, Neal; Yuen, Ryan K C; Trost, Brett; Paton, Tara A; Pereira, Sergio L; Herbrick, Jo-Anne; Wintle, Richard F; Merico, Daniele; Howe, Jennifer; MacDonald, Jeffrey R; Lu, Chao; Nalpathamkalam, Thomas; Sung, Wilson W L; Wang, Zhuozhi; Patel, Rohan V; Pellecchia, Giovanna; Wei, John; Strug, Lisa J; Bell, Sherilyn; Kellam, Barbara; Mahtani, Melanie M; Bassett, Anne S; Bombard, Yvonne; Weksberg, Rosanna; Shuman, Cheryl; Cohn, Ronald D; Stavropoulos, Dimitri J; Bowdin, Sarah; Hildebrandt, Matthew R; Wei, Wei; Romm, Asli; Pasceri, Peter; Ellis, James; Ray, Peter; Meyn, M Stephen; Monfared, Nasim; Hosseini, S Mohsen; Joseph-George, Ann M; Keeley, Fred W; Cook, Ryan A; Fiume, Marc; Lee, Hin C; Marshall, Christian R; Davies, Jill; Hazell, Allison; Buchanan, Janet A; Szego, Michael J; Scherer, Stephen W

    2018-02-05

    The Personal Genome Project Canada is a comprehensive public data resource that integrates whole genome sequencing data and health information. We describe genomic variation identified in the initial recruitment cohort of 56 volunteers. Volunteers were screened for eligibility and provided informed consent for open data sharing. Using blood DNA, we performed whole genome sequencing and identified all possible classes of DNA variants. A genetic counsellor explained the implication of the results to each participant. Whole genome sequencing of the first 56 participants identified 207 662 805 sequence variants and 27 494 copy number variations. We analyzed a prioritized disease-associated data set ( n = 1606 variants) according to standardized guidelines, and interpreted 19 variants in 14 participants (25%) as having obvious health implications. Six of these variants (e.g., in BRCA1 or mosaic loss of an X chromosome) were pathogenic or likely pathogenic. Seven were risk factors for cancer, cardiovascular or neurobehavioural conditions. Four other variants - associated with cancer, cardiac or neurodegenerative phenotypes - remained of uncertain significance because of discrepancies among databases. We also identified a large structural chromosome aberration and a likely pathogenic mitochondrial variant. There were 172 recessive disease alleles (e.g., 5 individuals carried mutations for cystic fibrosis). Pharmacogenomics analyses revealed another 3.9 potentially relevant genotypes per individual. Our analyses identified a spectrum of genetic variants with potential health impact in 25% of participants. When also considering recessive alleles and variants with potential pharmacologic relevance, all 56 participants had medically relevant findings. Although access is mostly limited to research, whole genome sequencing can provide specific and novel information with the potential of major impact for health care. © 2018 Joule Inc. or its licensors.

  12. 77 FR 64816 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2012-10-23

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome..., Human Genome Research, National Institutes of Health, HHS) Dated: October 16, 2012. David Clary, Program... Conference Call). Contact Person: Camilla E. Day, Ph.D., Scientific Review Officer, CIDR, National Human...

  13. 76 FR 9031 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2011-02-16

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... Call). Contact Person: Camilla E. Day, PhD, Scientific Review Officer, CIDR, National Human Genome...- 402-8837, [email protected] . (Catalogue of Federal Domestic Assistance Program Nos. 93.172, Human...

  14. 75 FR 62548 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2010-10-12

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... Call). Contact Person: Camilla E. Day, PhD, Scientific Review Officer, CIDR, National Human Genome...- 402-8837, [email protected] . Catalogue of Federal Domestic Assistance Program Nos. 93.172, Human...

  15. 78 FR 11898 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2013-02-20

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome....172, Human Genome Research, National Institutes of Health, HHS) Dated: February 13, 2013. David Clary... Conference Call). Contact Person: Camilla E. Day, Ph.D., Scientific Review Officer CIDR, National Human...

  16. 78 FR 77477 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2013-12-23

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome..., Human Genome Research, National Institutes of Health, HHS). Dated: December 17, 2013. David Clary... Conference Call). Contact Person: Camilla E. Day, Ph.D., Scientific Review Officer, CIDR, National Human...

  17. Genome-wide association study of antisocial personality disorder.

    Science.gov (United States)

    Rautiainen, M-R; Paunio, T; Repo-Tiihonen, E; Virkkunen, M; Ollila, H M; Sulkava, S; Jolanki, O; Palotie, A; Tiihonen, J

    2016-09-06

    The pathophysiology of antisocial personality disorder (ASPD) remains unclear. Although the most consistent biological finding is reduced grey matter volume in the frontal cortex, about 50% of the total liability to developing ASPD has been attributed to genetic factors. The contributing genes remain largely unknown. Therefore, we sought to study the genetic background of ASPD. We conducted a genome-wide association study (GWAS) and a replication analysis of Finnish criminal offenders fulfilling DSM-IV criteria for ASPD (N=370, N=5850 for controls, GWAS; N=173, N=3766 for controls and replication sample). The GWAS resulted in suggestive associations of two clusters of single-nucleotide polymorphisms at 6p21.2 and at 6p21.32 at the human leukocyte antigen (HLA) region. Imputation of HLA alleles revealed an independent association with DRB1*01:01 (odds ratio (OR)=2.19 (1.53-3.14), P=1.9 × 10(-5)). Two polymorphisms at 6p21.2 LINC00951-LRFN2 gene region were replicated in a separate data set, and rs4714329 reached genome-wide significance (OR=1.59 (1.37-1.85), P=1.6 × 10(-9)) in the meta-analysis. The risk allele also associated with antisocial features in the general population conditioned for severe problems in childhood family (β=0.68, P=0.012). Functional analysis in brain tissue in open access GTEx and Braineac databases revealed eQTL associations of rs4714329 with LINC00951 and LRFN2 in cerebellum. In humans, LINC00951 and LRFN2 are both expressed in the brain, especially in the frontal cortex, which is intriguing considering the role of the frontal cortex in behavior and the neuroanatomical findings of reduced gray matter volume in ASPD. To our knowledge, this is the first study showing genome-wide significant and replicable findings on genetic variants associated with any personality disorder.

  18. Genome-wide association study of antisocial personality disorder

    Science.gov (United States)

    Rautiainen, M-R; Paunio, T; Repo-Tiihonen, E; Virkkunen, M; Ollila, H M; Sulkava, S; Jolanki, O; Palotie, A; Tiihonen, J

    2016-01-01

    The pathophysiology of antisocial personality disorder (ASPD) remains unclear. Although the most consistent biological finding is reduced grey matter volume in the frontal cortex, about 50% of the total liability to developing ASPD has been attributed to genetic factors. The contributing genes remain largely unknown. Therefore, we sought to study the genetic background of ASPD. We conducted a genome-wide association study (GWAS) and a replication analysis of Finnish criminal offenders fulfilling DSM-IV criteria for ASPD (N=370, N=5850 for controls, GWAS; N=173, N=3766 for controls and replication sample). The GWAS resulted in suggestive associations of two clusters of single-nucleotide polymorphisms at 6p21.2 and at 6p21.32 at the human leukocyte antigen (HLA) region. Imputation of HLA alleles revealed an independent association with DRB1*01:01 (odds ratio (OR)=2.19 (1.53–3.14), P=1.9 × 10-5). Two polymorphisms at 6p21.2 LINC00951–LRFN2 gene region were replicated in a separate data set, and rs4714329 reached genome-wide significance (OR=1.59 (1.37–1.85), P=1.6 × 10−9) in the meta-analysis. The risk allele also associated with antisocial features in the general population conditioned for severe problems in childhood family (β=0.68, P=0.012). Functional analysis in brain tissue in open access GTEx and Braineac databases revealed eQTL associations of rs4714329 with LINC00951 and LRFN2 in cerebellum. In humans, LINC00951 and LRFN2 are both expressed in the brain, especially in the frontal cortex, which is intriguing considering the role of the frontal cortex in behavior and the neuroanatomical findings of reduced gray matter volume in ASPD. To our knowledge, this is the first study showing genome-wide significant and replicable findings on genetic variants associated with any personality disorder. PMID:27598967

  19. Virtual customer service agents: using social presence and personalization to shape online service encounters

    NARCIS (Netherlands)

    Verhagen, T.; van Nes, J; Feldberg, F; van Dolen, W.

    2014-01-01

    By performing tasks traditionally fulfilled by service personnel and having a humanlike appearance, virtual customer service agents bring classical service elements to the web, which may positively influence customer satisfaction through eliciting social responses and feelings of personalization.

  20. Virtual Customer Service Agents: Using Social Presence and Personalization to Shape Online Service Encounters

    NARCIS (Netherlands)

    Verhagen, T.; van Nes, J.; Feldberg, J.F.M.; van Dolen, W.M.

    2014-01-01

    By performing tasks traditionally fulfilled by service personnel and having a humanlike appearance, virtual customer service agents bring classical service elements to the web, which may positively influence customer satisfaction through eliciting social responses and feelings of personalization.

  1. Genic intolerance to functional variation and the interpretation of personal genomes.

    Directory of Open Access Journals (Sweden)

    Slavé Petrovski

    Full Text Available A central challenge in interpreting personal genomes is determining which mutations most likely influence disease. Although progress has been made in scoring the functional impact of individual mutations, the characteristics of the genes in which those mutations are found remain largely unexplored. For example, genes known to carry few common functional variants in healthy individuals may be judged more likely to cause certain kinds of disease than genes known to carry many such variants. Until now, however, it has not been possible to develop a quantitative assessment of how well genes tolerate functional genetic variation on a genome-wide scale. Here we describe an effort that uses sequence data from 6503 whole exome sequences made available by the NHLBI Exome Sequencing Project (ESP. Specifically, we develop an intolerance scoring system that assesses whether genes have relatively more or less functional genetic variation than expected based on the apparently neutral variation found in the gene. To illustrate the utility of this intolerance score, we show that genes responsible for Mendelian diseases are significantly more intolerant to functional genetic variation than genes that do not cause any known disease, but with striking variation in intolerance among genes causing different classes of genetic disease. We conclude by showing that use of an intolerance ranking system can aid in interpreting personal genomes and identifying pathogenic mutations.

  2. Organising healthcare services for persons with an intellectual disability.

    Science.gov (United States)

    Balogh, Robert; McMorris, Carly A; Lunsky, Yona; Ouellette-Kuntz, Helene; Bourne, Laurie; Colantonio, Angela; Gonçalves-Bradley, Daniela C

    2016-04-11

    When compared to the general population, persons with an intellectual disability have lower life expectancy, higher morbidity, and more difficulty finding and obtaining healthcare. Organisational interventions are used to reconfigure the structure or delivery of healthcare services. This is the first update of the original review. To assess the effects of organisational interventions of healthcare services for the mental and physical health problems of persons with an intellectual disability. For this update we searched CENTRAL, MEDLINE, EMBASE, CINAHL and other databases, from April 2006 to 4 September 2015. We checked reference lists of included studies and consulted experts in the field. Randomised controlled trials of organisational interventions of healthcare services aimed at improving care of mental and physical health problems of adult persons with an intellectual disability. We employed standard methodological procedures as outlined in the Cochrane Handbook of Systematic Reviews of Interventions, in addition to specific guidance from the Cochrane Effective Practice and Organisation of Care (EPOC) Group. We identified one new trial from the updated searches.Seven trials (347 participants) met the selection criteria. The interventions varied but had common components: interventions that increased the intensity and frequency of service delivery (4 trials, 200 participants), community-based specialist behaviour therapy (1 trial, 63 participants), and outreach treatment (1 trial, 50 participants). Another trial compared two active arms (traditional counselling and integrated intervention for bereavement, 34 participants).The included studies investigated interventions dealing with the mental health problems of persons with an intellectual disability; none focused on physical health problems. Four studies assessed the effect of organisational interventions on behavioural problems for persons with an intellectual disability, three assessed care giver burden, and

  3. 77 FR 50140 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2012-08-20

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome..., Human Genome Research, National Institutes of Health, HHS) Dated: August 13, 2012. Anna Snouffer, Deputy..., Bethesda, MD 20892. Contact Person: Camilla E. Day, Ph.D., Scientific Review Officer, CIDR, National Human...

  4. 76 FR 50486 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2011-08-15

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... Conference Call). Contact Person: Camilla E. Day, PhD, Scientific Review Officer, CIDR, National Human Genome...- 402-8837, [email protected] . (Catalogue of Federal Domestic Assistance Program Nos. 93.172, Human...

  5. Inmarsat and personal mobile satellite services

    Science.gov (United States)

    McDougal, Patrick; Barendse, Victor

    Personal communications - mobile satellite services (PC-MSS) hold much promise as a profitable business opportunity for a number of interested operators and manufacturers. What will be their impact on the overall mobile communications landscape, and what role will they play in the drive towards the universal personal communicator? It is the thesis of this paper that PC-MSS can provide one of the critical enabling technologies to allow a more rapid, global assimilation of personal mobile communications. Terrestrial mobile communications are local by definition, both in terms of service reach and regulatory oversight. It is estimated that cellular, and other forms of terrestrial mobile communications, will cover over 50% of the world's population, but only 15% of the land mass area by the year 2000. PC-MSS will allow 'cellular extension' to interested users in the uncovered parts of the world. The market opportunity is established and technical solutions are available. However 'user cooperation' will be required and cross mapping of market needs to the technology solutions is the key to financially viable solutions. The potential political and regulatory hurdles are daunting. Inmarsat, as the existing global MSS partnership, is already introducing PC-MSS products and services in the 1990s. The widespread use of briefcase satphones (Inm-M), laptop-sized data terminals (Inm-C), and pocket satpagers (Inm-paging) will break new ground in reshaping the international regulatory context of mobile communications, and in initiating the optimal public switched network integration necessary for global interconnect. It is suggested that this evolutionary approach, by means of international consensus-building within a global partnership of operators, is an effective and proven method to ensure both a sufficient financial return for investors, and fair and equitable access of these services for all countries and users.

  6. Personal Genomic Testing for Cancer Risk: Results From the Impact of Personal Genomics Study.

    Science.gov (United States)

    Gray, Stacy W; Gollust, Sarah E; Carere, Deanna Alexis; Chen, Clara A; Cronin, Angel; Kalia, Sarah S; Rana, Huma Q; Ruffin, Mack T; Wang, Catharine; Roberts, J Scott; Green, Robert C

    2017-02-20

    Purpose Significant concerns exist regarding the potential for unwarranted behavior changes and the overuse of health care resources in response to direct-to-consumer personal genomic testing (PGT). However, little is known about customers' behaviors after PGT. Methods Longitudinal surveys were given to new customers of 23andMe (Mountain View, CA) and Pathway Genomics (San Diego, CA). Survey data were linked to individual-level PGT results through a secure data transfer process. Results Of the 1,042 customers who completed baseline and 6-month surveys (response rate, 71.2%), 762 had complete cancer-related data and were analyzed. Most customers reported that learning about their genetic risk of cancers was a motivation for testing (colorectal, 88%; prostate, 95%; breast, 94%). No customers tested positive for pathogenic mutations in highly penetrant cancer susceptibility genes. A minority of individuals received elevated single nucleotide polymorphism-based PGT cancer risk estimates (colorectal, 24%; prostate, 24%; breast, 12%). At 6 months, customers who received elevated PGT cancer risk estimates were not significantly more likely to change their diet, exercise, or advanced planning behaviors or engage in cancer screening, compared with individuals at average or reduced risk. Men who received elevated PGT prostate cancer risk estimates changed their vitamin and supplement use more than those at average or reduced risk (22% v 7.6%, respectively; adjusted odds ratio, 3.41; 95% CI, 1.44 to 8.18). Predictors of 6-month behavior include baseline behavior (exercise, vitamin or supplement use, and screening), worse health status (diet and vitamin or supplement use), and older age (advanced planning, screening). Conclusion Most adults receiving elevated direct-to-consumer PGT single nucleotide polymorphism-based cancer risk estimates did not significantly change their diet, exercise, advanced care planning, or cancer screening behaviors.

  7. Approving of personal dosimeter services

    International Nuclear Information System (INIS)

    Bergman, K.; Malmqvist, L.

    2001-09-01

    The Swedish regulation SSI FS 98:5 requires that radiological workers of category A use dosemeters from an approved personal dosimetry service. The regulation also includes certain specific dosimeter requirements, which are based on those presented in the Technical Recommendations by the European Commission (Report EUR 14852 EN, 1994). All services have been tested for their ability to determine Hp(10) and some of them to determine Hp(0.07) at one radiation quality. The test was performed in the interval 0.2 mSv to 100 mSv at three different dose equivalents unknown to the system owner. The 11 services operating in Sweden at the moment use 5 different types of dosimeters. The five unique systems have been tested regarding the angular and energy dependence of the response of the dosimeters. The dosimeters were irradiated to a personal dose equivalent of about 1 mSv at three photon energies and at four angles (0, 20, 40 and 60 deg. resp. ) both vertically and horizontally rotated. Only 2 of the services determine Hp(0.07) for beta and gamma radiation and were tested for this quantity. The test results for Hp(10) are all except two within the trumpet curve. For the unique systems it is shown that the uncertainty related to angular response at a specified energy is within the required ±40 % except for the lowest X-ray quality at 40 kV. The response is more dependent on photon energy than on the direction of the photon radiation and the choice of radiation quality for the calibration is of great importance for the system performance

  8. Adopting genetics: motivations and outcomes of personal genomic testing in adult adoptees.

    Science.gov (United States)

    Baptista, Natalie M; Christensen, Kurt D; Carere, Deanna Alexis; Broadley, Simon A; Roberts, J Scott; Green, Robert C

    2016-09-01

    American adult adoptees may possess limited information about their biological families and turn to direct-to-consumer personal genomic testing (PGT) for genealogical and medical information. We investigated the motivations and outcomes of adoptees undergoing PGT using data from the Impact of Personal Genomics (PGen) Study. The PGen Study surveyed new 23andMe and Pathway Genomics customers before and 6 months after receiving PGT results. Exploratory analyses compared adoptees' and nonadoptees' PGT attitudes, expectations, and experiences. We evaluated the association of adoption status with motivations for testing and postdisclosure actions using logistic regression models. Of 1,607 participants, 80 (5%) were adopted. As compared with nonadoptees, adoptees were more likely to cite limited knowledge of family health history (OR = 10.1; 95% CI = 5.7-19.5) and the opportunity to learn genetic disease risks (OR = 2.7; 95% CI = 1.6-4.8) as strong motivations for PGT. Of 922 participants who completed 6-month follow-up, there was no significant association between adoption status and PGT-motivated health-care utilization or health-behavior change. PGT allows adoptees to gain otherwise inaccessible information about their genetic disease risks and ancestry, helping them to fill the void of an incomplete family health history.Genet Med 18 9, 924-932.

  9. Accessibility to health services by persons with disabilities.

    Science.gov (United States)

    Castro, Shamyr Sulyvan; Lefèvre, Fernando; Lefèvre, Ana Maria Cavalcanti; Cesar, Chester Luiz Galvão

    2011-02-01

    To analyze the difficulties in accessibility to health services experienced by persons with disabilities. A qualitative study was performed with individuals who reported having a certain type of disability (paralysis or amputation of limbs; low vision, unilateral or total blindness; low hearing, unilateral or total deafness). A total of 25 individuals (14 women) were interviewed in the city of São Paulo, Southeastern Brazil, between June and August 2007, responding to questions about transportation and accessibility to health services. Collective Subject Discourse was the methodology used to analyze results and analyses were performed with the Qualiquantisoft software. The analysis of discourses on transportation to health services revealed a diversity in terms of the user going to the service alone or accompanied; using a private car, public transportation or ambulance or walking; and requiring different times to arrive at the service. With regard to the difficulties in accessibility to health services, there were reports of delayed service, problems with parking, and lack of ramps, elevators, wheelchairs, doctors and adapted toilets. Individuals with a certain type of disability used various means of transportation, requiring someone to accompany them in some cases. Problems with accessibility to health services were reported by persons with disabilities, contradicting the principle of equity, a precept of the Brazilian Unified Health System.

  10. Tax subsidization of personal assistance services.

    Science.gov (United States)

    Mendelsohn, Steven; Myhill, William N; Morris, Michael

    2012-04-01

    Personal assistance services (PAS) is the term used to describe the range of assistance, services, and supports many people with disabilities and older Americans need to remain in their homes and communities. The Americans with Disabilities Act requires that people with disabilities receive essential services in the communities of their choice rather than in institutional settings. PAS availability often determines whether persons with disabilities become institutionalized or remain in their communities. PAS, however, are not inexpensive or broadly available. Strategies are needed to improve their availability to people with disabilities and the elderly. We sought to analyze 8 provisions of the Internal Revenue Code for their utility to make PAS more affordable and available. The authors conducted a legal analysis of 8 statutory provisions, as interpreted by regulations, court decisions, and other authoritative sources. Each of the tax provisions analyzed covers some PAS expenses incurred by an individual or family. Favorable tax treatment is impacted by the nature and amount of expenses and by the location and conditions of services. The current limitations and complexities of legal interpretations and the fact that many individuals with disabilities are uninformed about these tax provisions present challenges and opportunities. As the need for PAS grows, reform of tax policy is an important complement to health care and long-term services and supports for people with disabilities. To increase utilization of current beneficial tax provisions that subsidize the cost of PAS, individuals with disabilities and tax preparers must become better informed about using these provisions. Copyright © 2012 Elsevier Inc. All rights reserved.

  11. Promoting personal safety of building service workers: issues and challenges.

    Science.gov (United States)

    Chen, Shelley I; Skillen, D Lynn

    2006-06-01

    This exploratory, descriptive study conducted at a large western Canadian university solicited perceptions of personal safety among building service workers who perform night shift work alone. Ten semi-structured interviews were conducted at approximately 10:00 p.m. or 7:00 a.m with a convenience sample of night building service workers in private or semi-private locations on the university campus. Transcribed interview data were subjected to inductive content analysis using descriptive, interpretive, and pattern coding (Miles & Huberman, 1994). Results suggest that building service night shift workers are exposed to personal safety hazards in their physical and psychosocial work environments. In addition, culturally and linguistically appropriate delivery of safety training and education about policies and procedures is required for culturally diverse building service workers. Promotion of personal safety in this heterogeneous worker population requires due diligence, assessment, and advocacy.

  12. Borderline Personality Disorder in an Intermediate Psychological Therapies Service

    Science.gov (United States)

    Ryan, Seamus; Danquah, Adam N.; Berry, Katherine; Hopper, Mary

    2017-01-01

    The intermediate psychological therapies service is provided for individuals referred with common mental health problems within the primary care psychological therapies service, but whose difficulties are longstanding and/or complex. The prevalence of borderline personality disorder (BPD) in intermediate psychological therapy services has not been…

  13. Comparative Effectiveness Research, Genomics-Enabled Personalized Medicine, and Rapid Learning Health Care: A Common Bond

    Science.gov (United States)

    Ginsburg, Geoffrey S.; Kuderer, Nicole M.

    2012-01-01

    Despite stunning advances in our understanding of the genetics and the molecular basis for cancer, many patients with cancer are not yet receiving therapy tailored specifically to their tumor biology. The translation of these advances into clinical practice has been hindered, in part, by the lack of evidence for biomarkers supporting the personalized medicine approach. Most stakeholders agree that the translation of biomarkers into clinical care requires evidence of clinical utility. The highest level of evidence comes from randomized controlled clinical trials (RCTs). However, in many instances, there may be no RCTs that are feasible for assessing the clinical utility of potentially valuable genomic biomarkers. In the absence of RCTs, evidence generation will require well-designed cohort studies for comparative effectiveness research (CER) that link detailed clinical information to tumor biology and genomic data. CER also uses systematic reviews, evidence-quality appraisal, and health outcomes research to provide a methodologic framework for assessing biologic patient subgroups. Rapid learning health care (RLHC) is a model in which diverse data are made available, ideally in a robust and real-time fashion, potentially facilitating CER and personalized medicine. Nonetheless, to realize the full potential of personalized care using RLHC requires advances in CER and biostatistics methodology and the development of interoperable informatics systems, which has been recognized by the National Cancer Institute's program for CER and personalized medicine. The integration of CER methodology and genomics linked to RLHC should enhance, expedite, and expand the evidence generation required for fully realizing personalized cancer care. PMID:23071236

  14. The role of disease characteristics in the ethical debate on personal genome testing

    NARCIS (Netherlands)

    E.M. Bunnik (Eline); M.H.N. Schermer (Maartje); A.C.J.W. Janssens (Cécile)

    2012-01-01

    textabstractBackground: Companies are currently marketing personal genome tests directly-to-consumer that provide genetic susceptibility testing for a range of multifactorial diseases simultaneously. As these tests comprise multiple risk analyses for multiple diseases, they may be difficult to

  15. Personalized Location-Based Recommendation Services for Tour Planning in Mobile Tourism Applications

    Science.gov (United States)

    Yu, Chien-Chih; Chang, Hsiao-Ping

    Travel and tour planning is a process of searching, selecting, grouping and sequencing destination related products and services including attractions, accommodations, restaurants, and activities. Personalized recommendation services aim at suggesting products and services to meet users’ preferences and needs, while location-based services focus on providing information based on users’ current positions. Due to the fast growing of user needs in the mobile tourism domain, how to provide personalized location-based tour recommendation services becomes a critical research and practical issue. The objective of this paper is to propose a system architecture and design methods for facilitating the delivery of location-based recommendation services to support personalized tour planning. Based on tourists’ current location and time, as well as personal preferences and needs, various recommendations regarding sightseeing spots, hotels, restaurants, and packaged tour plans can be generated efficiently. An application prototype is also implemented to illustrate and test the system feasibility and effectiveness.

  16. Interprofessional education for personalized medicine through technology-based learning.

    Science.gov (United States)

    Haga, Susanne B; Mills, Rachel; Aucoin, Julia; Taekman, Jeff

    2015-06-01

    The delivery of personalized medicine utilizing genetic and genomic technologies is anticipated to involve many medical specialties. Interprofessional education will be key to the delivery of personalized medicine in order to reduce disjointed or uncoordinated clinical care, and optimize effective communication to promote patient understanding and engagement regarding the use of or need for these services. While several health professional organizations have endorsed and/or developed core competencies for genetics and genomics, the lack of interprofessional guidelines and training may hamper the delivery of coordinated personalized medicine. In this perspective, we consider the potential for interprofessional education and training using technology-based approaches, such as virtual simulation and gaming, compared with traditional educational approaches.

  17. Genome-Wide Association Uncovers Shared Genetic Effects Among Personality Traits and Mood States

    NARCIS (Netherlands)

    Luciano, Michelle; Huffman, Jennifer E.; Arias-Vásquez, Alejandro; Vinkhuyzen, Anna A. E.; Middeldorp, Christel M.; Giegling, Ina; Payton, Antony; Davies, Gail; Zgaga, Lina; Janzing, Joost; Ke, Xiayi; Galesloot, Tessel; Hartmann, Annette M.; Ollier, William; Tenesa, Albert; Hayward, Caroline; Verhagen, Maaike; Montgomery, Grant W.; Hottenga, Jouke-Jan; Konte, Bettina; Starr, John M.; Vitart, Veronique; Vos, Pieter E.; Madden, Pamela A. F.; Willemsen, Gonneke; Konnerth, Heike; Horan, Michael A.; Porteous, David J.; Campbell, Harry; Vermeulen, Sita H.; Heath, Andrew C.; Wright, Alan; Polasek, Ozren; Kovacevic, Sanja B.; Hastie, Nicholas D.; Franke, Barbara; Boomsma, Dorret I.; Martin, Nicholas G.; Rujescu, Dan; Wilson, James F.; Buitelaar, Jan; Pendleton, Neil; Rudan, Igor; Deary, Ian J.

    2012-01-01

    Measures of personality and psychological distress are correlated and exhibit genetic covariance. We conducted univariate genome-wide SNP (similar to 2.5 million) and gene-based association analyses of these traits and examined the overlap in results across traits, including a prediction analysis of

  18. Deep brain stimulation, brain maps and personalized medicine: lessons from the human genome project.

    Science.gov (United States)

    Fins, Joseph J; Shapiro, Zachary E

    2014-01-01

    Although the appellation of personalized medicine is generally attributed to advanced therapeutics in molecular medicine, deep brain stimulation (DBS) can also be so categorized. Like its medical counterpart, DBS is a highly personalized intervention that needs to be tailored to a patient's individual anatomy. And because of this, DBS like more conventional personalized medicine, can be highly specific where the object of care is an N = 1. But that is where the similarities end. Besides their differing medical and surgical provenances, these two varieties of personalized medicine have had strikingly different impacts. The molecular variant, though of a more recent vintage has thrived and is experiencing explosive growth, while DBS still struggles to find a sustainable therapeutic niche. Despite its promise, and success as a vetted treatment for drug resistant Parkinson's Disease, DBS has lagged in broadening its development, often encountering regulatory hurdles and financial barriers necessary to mount an adequate number of quality trials. In this paper we will consider why DBS-or better yet neuromodulation-has encountered these challenges and contrast this experience with the more successful advance of personalized medicine. We will suggest that personalized medicine and DBS's differential performance can be explained as a matter of timing and complexity. We believe that DBS has struggled because it has been a journey of scientific exploration conducted without a map. In contrast to molecular personalized medicine which followed the mapping of the human genome and the Human Genome Project, DBS preceded plans for the mapping of the human brain. We believe that this sequence has given personalized medicine a distinct advantage and that the fullest potential of DBS will be realized both as a cartographical or electrophysiological probe and as a modality of personalized medicine.

  19. 78 FR 48466 - Hewlett Packard Company, Printing & Personal System Americas Division, Marketing Services...

    Science.gov (United States)

    2013-08-08

    ..., Printing & Personal System Americas Division, Marketing Services, Houston, Texas; Notice of Investigation... Division, Marketing Services, Houston, Texas. On January 25, 2013, the Department issued a Notice of... & Personal System Americas Division, Marketing Services, Houston, Texas) to be filed. Because the later-filed...

  20. Care and Service at Home for Persons With Dementia in Europe.

    Science.gov (United States)

    Bökberg, Christina; Ahlström, Gerd; Leino-Kilpi, Helena; Soto-Martin, Maria E; Cabrera, Esther; Verbeek, Hilde; Saks, Kai; Stephan, Astrid; Sutcliffe, Caroline; Karlsson, Staffan

    2015-09-01

    To describe available and utilized formal care and service at home for persons with dementia, from diagnosis to end-of-life stage, in eight European countries. A descriptive cross-country design concerning eight European countries as a part of the European research project RightTimePlaceCare. The research team in each country used a mapping system to collect country-specific information concerning dementia care and service system. The mapping system consists of 50 types of care and service activities. Sixteen of the 50 predefined activities concerning care and service at home were selected for this study and subdivided into three categories, following the stages of dementia. Availability was reported to be higher than utilization, and the findings indicated more similarities than differences among the eight countries involved. Even though there were several available activities of "basic care and services" and "healthcare interventions," they were utilized by few in most countries. Furthermore, "specialized dementia care and services" were sparsely available and even more sparsely utilized in the participating countries. The findings indicated that persons with dementia in Europe received formal care and service on a general, basic level but seldom adjusted to their specific needs. This study describes the gap between service provision and utilization enabling nurses to develop individually adjusted care plans for persons with dementia during the progress of the disease. The findings do not include matters of quality of care or how to best organize effective care and services. However, the activities of care and services presented here should shed light on what room there is for improvement when it comes to enabling persons with dementia to go on living at home. © 2015 Sigma Theta Tau International.

  1. Direct-to-consumer genomics on the scales of autonomy

    Science.gov (United States)

    Vayena, Effy

    2015-01-01

    Direct-to-consumer (DTC) genetic services have generated enormous controversy from their first emergence. A dramatic recent manifestation of this is the Food and Drug Administration's (FDA) cease and desist order against 23andMe, the leading provider in the market. Critics have argued for the restrictive regulation of such services, and even their prohibition, on the grounds of the harm they pose to consumers. Their advocates, by contrast, defend them as a means of enhancing the autonomy of those same consumers. Autonomy emerges as a key battle-field in this debate, because many of the ‘harm’ arguments can be interpreted as identifying threats to autonomy. This paper assesses whether DTC genomic services are a threat to, or instead, an enhancement of, personal autonomy. It deploys Joseph Raz's account of personal autonomy, with its emphasis on choice from a range of valuable options. It then seeks to counter claims that DTC genomics threatens autonomy because it involves manipulation in contravention of consumers’ independence or because it does not generate valuable options which can be meaningfully engaged with by consumers. It is stressed that the value of the options generated by DTC genomics should not be judged exclusively from the perspective of medical actionability, but should take into consideration plural utilities. Finally, the paper ends by broaching policy recommendations, suggesting that there is a strong autonomy-based argument for permitting DTC genomic services, and that the key question is the nature of the regulatory conditions under which they should be permitted. The discussion of autonomy in this paper helps illuminate some of these conditions. PMID:24797610

  2. 26 CFR 1.162-7 - Compensation for personal services.

    Science.gov (United States)

    2010-04-01

    ... 26 Internal Revenue 2 2010-04-01 2010-04-01 false Compensation for personal services. 1.162-7 Section 1.162-7 Internal Revenue INTERNAL REVENUE SERVICE, DEPARTMENT OF THE TREASURY (CONTINUED) INCOME... a flat rate. Generally speaking, if contingent compensation is paid pursuant to a free bargain...

  3. Multicultural personality and posttraumatic stress in U.S. service members.

    Science.gov (United States)

    Herrera, Catherine J; Owens, Gina P

    2015-04-01

    Modern military missions place numerous demands on service members, including tactical, personal, and cultural challenges. The purpose of this study was to explore how domains of multicultural personality (cultural empathy, open-mindedness, social initiative, emotional stability, and flexibility) and combat exposure relate to posttraumatic stress disorder (PTSD) in service members. Participants (N = 163) completed the Multicultural Personality Questionnaire, Combat Exposure Scale, and PTSD Checklist-Military as part of an online survey. The majority of participants were Caucasian (87%), mean age was 33 years, and all were deployed at least once to Iraq or Afghanistan Regression results indicated that higher levels of combat exposure and open-mindedness and lower levels of flexibility and emotional stability were significant predictors of higher PTSD severity. The interactions between combat exposure and flexibility and combat exposure and openness were also significant. Higher levels of flexibility and emotional stability seem particularly important in their association with lower PTSD severity for service members. © 2014 Wiley Periodicals, Inc.

  4. Privacy in the Genomic Era

    Science.gov (United States)

    NAVEED, MUHAMMAD; AYDAY, ERMAN; CLAYTON, ELLEN W.; FELLAY, JACQUES; GUNTER, CARL A.; HUBAUX, JEAN-PIERRE; MALIN, BRADLEY A.; WANG, XIAOFENG

    2015-01-01

    Genome sequencing technology has advanced at a rapid pace and it is now possible to generate highly-detailed genotypes inexpensively. The collection and analysis of such data has the potential to support various applications, including personalized medical services. While the benefits of the genomics revolution are trumpeted by the biomedical community, the increased availability of such data has major implications for personal privacy; notably because the genome has certain essential features, which include (but are not limited to) (i) an association with traits and certain diseases, (ii) identification capability (e.g., forensics), and (iii) revelation of family relationships. Moreover, direct-to-consumer DNA testing increases the likelihood that genome data will be made available in less regulated environments, such as the Internet and for-profit companies. The problem of genome data privacy thus resides at the crossroads of computer science, medicine, and public policy. While the computer scientists have addressed data privacy for various data types, there has been less attention dedicated to genomic data. Thus, the goal of this paper is to provide a systematization of knowledge for the computer science community. In doing so, we address some of the (sometimes erroneous) beliefs of this field and we report on a survey we conducted about genome data privacy with biomedical specialists. Then, after characterizing the genome privacy problem, we review the state-of-the-art regarding privacy attacks on genomic data and strategies for mitigating such attacks, as well as contextualizing these attacks from the perspective of medicine and public policy. This paper concludes with an enumeration of the challenges for genome data privacy and presents a framework to systematize the analysis of threats and the design of countermeasures as the field moves forward. PMID:26640318

  5. Privacy in the Genomic Era.

    Science.gov (United States)

    Naveed, Muhammad; Ayday, Erman; Clayton, Ellen W; Fellay, Jacques; Gunter, Carl A; Hubaux, Jean-Pierre; Malin, Bradley A; Wang, Xiaofeng

    2015-09-01

    Genome sequencing technology has advanced at a rapid pace and it is now possible to generate highly-detailed genotypes inexpensively. The collection and analysis of such data has the potential to support various applications, including personalized medical services. While the benefits of the genomics revolution are trumpeted by the biomedical community, the increased availability of such data has major implications for personal privacy; notably because the genome has certain essential features, which include (but are not limited to) (i) an association with traits and certain diseases, (ii) identification capability (e.g., forensics), and (iii) revelation of family relationships. Moreover, direct-to-consumer DNA testing increases the likelihood that genome data will be made available in less regulated environments, such as the Internet and for-profit companies. The problem of genome data privacy thus resides at the crossroads of computer science, medicine, and public policy. While the computer scientists have addressed data privacy for various data types, there has been less attention dedicated to genomic data. Thus, the goal of this paper is to provide a systematization of knowledge for the computer science community. In doing so, we address some of the (sometimes erroneous) beliefs of this field and we report on a survey we conducted about genome data privacy with biomedical specialists. Then, after characterizing the genome privacy problem, we review the state-of-the-art regarding privacy attacks on genomic data and strategies for mitigating such attacks, as well as contextualizing these attacks from the perspective of medicine and public policy. This paper concludes with an enumeration of the challenges for genome data privacy and presents a framework to systematize the analysis of threats and the design of countermeasures as the field moves forward.

  6. The Personal Norm of Reciprocity among mental health service users: conceptual development and measurement.

    Science.gov (United States)

    Matejkowski, Jason; McCarthy, Kevin S; Draine, Jeffrey

    2011-01-01

    A measure of an individual's level of internalization of the norm of reciprocity may signal exchange preferences and indicate whether "active" or "passive" mental health services are preferable to consumers. We evaluated the psychometric properties of one such measure, the Personal Norm of Reciprocity (PNR) scale. We recruited 70 persons receiving mental health services and 65 comparison participants to complete questionnaires assessing reciprocity tendencies and correlates of mental illness. Two of three subscales of a shortened PNR showed evidence of reliability and validity. Consumers endorsed higher levels of the reciprocity norm than persons not seeking services. Persons in "active" service settings displayed greater rigidity in application of the reciprocity norm than individuals in "passive" service settings or comparison participants. The shortened PNR can be a useful measure of individual reciprocity preferences. Measurement of the internalization of the norm of reciprocity may assist practitioners in identifying what types of services are more likely to retain and benefit mental health service consumers.

  7. Inside Dropbox: Understanding Personal Cloud Storage Services

    NARCIS (Netherlands)

    Drago, Idilio; Mellia, Marco; Munafò, Maurizio M.; Sperotto, Anna; Sadre, R.; Pras, Aiko

    2012-01-01

    Personal cloud storage services are gaining popularity. With a rush of providers to enter the market and an increasing offer of cheap storage space, it is to be expected that cloud storage will soon generate a high amount of Internet traffic. Very little is known about the architecture and the

  8. An exploration of person-centred concepts in human services: A thematic analysis of the literature.

    Science.gov (United States)

    Waters, Rebecca A; Buchanan, Angus

    2017-10-01

    Being 'person-centred' in the delivery of health and human services has become synonymous with quality care, and it is a core feature of policy reform in Australia and other Western countries. This research aimed to identify the uses, definitions and characteristics of the term 'person-centred' in the ageing, mental health and disability literature. A thematic analysis identified seven common core themes of person-centredness: honouring the person, being in relationship, facilitating participation and engagement, social inclusion/citizenship, experiencing compassionate love, being strengths/capacity focussed, and organisational characteristics. These suggest a set of higher-order experiences for people that are translated differently in different human services. There is no common definition of what it means to be person-centred, despite being a core feature of contemporary health and human service policy, and this suggests that its inclusion facilitates further misunderstanding and misinterpretation. A common understanding and policy conceptualisation of person-centredness is likely to support quality outcomes in service delivery especially where organisations work across human service groups. Further research into the application and service expressions of being 'person-centred' in context is necessary. Copyright © 2017 Elsevier B.V. All rights reserved.

  9. Health services needs of older persons: emerging findings from Tarakan City, East Kalimantan

    Directory of Open Access Journals (Sweden)

    Rina K. Kusumaratna

    2011-12-01

    Full Text Available As older persons are steadily increasing in number and there are no specialized comprehensive healthcare services for older persons in Indonesia, including East Kalimantan, the aim of the present study was to determine the extent of the problems facing healthcare staff and officials in Tarakan City, East Kalimantan, in providing comprehensive healthcare services attuned to the needs of older persons.This study was a qualitative interview-based survey with focus group discussions, involving heads and healthcare officials of seven puskesmas in Tarakan City, East Kalimantan district, with the addition of a number of district health planning officials. The results revealed a difference between daily hospital referral rate of older persons by puskesmas staff and actual daily hospital admission rate for the referrals. None of the consulted healthcare staff had any speciality education in geriatrics or older persons health. The older persons most frequently presented to the hospital with hypertension, diabetes, and myocardial insufficiency. On the other hand, at the health centers the presenting conditions were hypertension, gastroenteritis, rheumatism, sleep disorders, and upper respiratory tract infections. Improved access to healthcare for older persons should be achieved by improving knowledge and skills of human resources, including communication skills, and of supporting healthcare service infrastructure at puskesmas, specifically oriented towards the needs of and designed for use by older persons, such as ramps for wheelchairs, and handrails in corridors. Local governments should strengthen the appropriate service delivery to older persons, and provide support for the maintenance, sustainability and strengthening of community-based care for older persons.

  10. Health service needs of older persons: emerging findings from Tarakan City, East Kalimantan

    Directory of Open Access Journals (Sweden)

    Rina K. Kusumaratna

    2016-02-01

    Full Text Available As older persons are steadily increasing in number and there are no specialized comprehensive healthcare services for older persons in Indonesia, including East Kalimantan, the aim of the present study was to determine the extent of the problems facing healthcare staff and officials in Tarakan City, East Kalimantan, in providing comprehensive healthcare services attuned to the needs of older persons.This study was a qualitative interview-based survey with focus group discussions, involving heads and healthcare officials of seven puskesmas in Tarakan City, East Kalimantan district, with the addition of a number of district health planning officials. The results revealed a difference between daily hospital referral rate of older persons by puskesmas staff and actual daily hospital admission rate for the referrals. None of the consulted healthcare staff had any speciality education in geriatrics or older persons health. The older persons most frequently presented to the hospital with hypertension, diabetes, and myocardial insufficiency. On the other hand, at the health centers the presenting conditions were hypertension, gastroenteritis, rheumatism, sleep disorders, and upper respiratory tract infections. Improved access to healthcare for older persons should be achieved by improving knowledge and skills of human resources, including communication skills, and of supporting healthcare service infrastructure at puskesmas, specifically oriented towards the needs of and designed for use by older persons, such as ramps for wheelchairs, and handrails in corridors. Local governments should strengthen the appropriate service delivery to older persons, and provide support for the maintenance, sustainability and strengthening of community-based care for older persons.

  11. A Personal Context-Aware Multi-Device Coaching Service that Supports a Healthy Lifestyle

    NARCIS (Netherlands)

    op den Akker, Hendrikus J.A.; Klaassen, Randy; Lavrysen, Tine; Geleijnse, Gijs; van Halteren, Aart; Schwietert, Henk; van der Hout, Marloes

    2011-01-01

    This paper describes work in progress in the European Artemis project Smarcos. Smarcos focuses on interusability of multi-device embedded and networked services. The work presented here is devoted to the development of context-aware personal coaching service systems that give users personalized

  12. Personality assessment of homeless adults as a tool for service planning.

    Science.gov (United States)

    Tolomiczenko, G S; Sota, T; Goering, P N

    2000-01-01

    The psychiatric status of homeless adults has been described primarily in terms of Axis I disorders. By adding a subset of the Personality Assessment Inventory, this study tests the feasibility and usefulness of a brief, self-administered questionnaire to obtain scores on several dimensions of personality. Cluster analysis sorted 112 tested subjects into four groups characterized by distinct profiles. Two of these were characterized by extreme scores on pathological dimensions of personality (borderline features, antisocial traits, and aggressivity) and differed primarily on the dimension of suicidality. The third reflected moderate levels of personality dysfunction and the fourth did not deviate from adult nonclinical norms. The validity of the clusters was supported by demographic, background, and diagnostic subgroup differences. Brief personality assessment can be a cost-effective approach to matching services with clinical needs of homeless adults by attending to interpersonal dimensions that will likely affect service provision.

  13. How brand personality, brand identification and service quality influence service brand equity

    Directory of Open Access Journals (Sweden)

    Sandra Maria Correia Loureiro

    2014-12-01

    Full Text Available During the past couple of decades, brand equity has emerged as one of the key concepts in marketing. Literature concerned with consumer brand relationship is calling for more studies in order to increase understanding of brand equity dimensions. Therefore, this study aims to contribute to the existing body of knowledge by examining the strength of relational variables on brand equity perceived by consumers. Findings support the proposed model in the service industry revealing that brand loyalty, brand identification, trust, brand personality and brand awareness are the variables that have a greatest impact on brand equity. Thus, this study is the first to measure the strength of assorted relational variables, and variables related with identification and personality on brand equity for brands in the service industry. In this vein, brand managers should be aware of the importance of building a brand regarding the way they communicate the features of the brand.

  14. The Information Technology Infrastructure for the Translational Genomics Core and the Partners Biobank at Partners Personalized Medicine

    Directory of Open Access Journals (Sweden)

    Natalie Boutin

    2016-01-01

    Full Text Available The Biobank and Translational Genomics core at Partners Personalized Medicine requires robust software and hardware. This Information Technology (IT infrastructure enables the storage and transfer of large amounts of data, drives efficiencies in the laboratory, maintains data integrity from the time of consent to the time that genomic data is distributed for research, and enables the management of complex genetic data. Here, we describe the functional components of the research IT infrastructure at Partners Personalized Medicine and how they integrate with existing clinical and research systems, review some of the ways in which this IT infrastructure maintains data integrity and security, and discuss some of the challenges inherent to building and maintaining such infrastructure.

  15. Integrating sequencing technologies in personal genomics: optimal low cost reconstruction of structural variants.

    Directory of Open Access Journals (Sweden)

    Jiang Du

    2009-07-01

    Full Text Available The goal of human genome re-sequencing is obtaining an accurate assembly of an individual's genome. Recently, there has been great excitement in the development of many technologies for this (e.g. medium and short read sequencing from companies such as 454 and SOLiD, and high-density oligo-arrays from Affymetrix and NimbelGen, with even more expected to appear. The costs and sensitivities of these technologies differ considerably from each other. As an important goal of personal genomics is to reduce the cost of re-sequencing to an affordable point, it is worthwhile to consider optimally integrating technologies. Here, we build a simulation toolbox that will help us optimally combine different technologies for genome re-sequencing, especially in reconstructing large structural variants (SVs. SV reconstruction is considered the most challenging step in human genome re-sequencing. (It is sometimes even harder than de novo assembly of small genomes because of the duplications and repetitive sequences in the human genome. To this end, we formulate canonical problems that are representative of issues in reconstruction and are of small enough scale to be computationally tractable and simulatable. Using semi-realistic simulations, we show how we can combine different technologies to optimally solve the assembly at low cost. With mapability maps, our simulations efficiently handle the inhomogeneous repeat-containing structure of the human genome and the computational complexity of practical assembly algorithms. They quantitatively show how combining different read lengths is more cost-effective than using one length, how an optimal mixed sequencing strategy for reconstructing large novel SVs usually also gives accurate detection of SNPs/indels, how paired-end reads can improve reconstruction efficiency, and how adding in arrays is more efficient than just sequencing for disentangling some complex SVs. Our strategy should facilitate the sequencing of

  16. 76 FR 52378 - Privacy Act; System of Records: State-76, Personal Services Contractor Records

    Science.gov (United States)

    2011-08-22

    ... Services Contractor Records SUMMARY: Notice is hereby given that the Department of State proposes to create a new system of records, Personal Services Contractor Records, State-76, pursuant to the provisions... July 20, 2011. It is proposed that the new system be named ``Personal Services Contractor Records.'' It...

  17. Models of home care services for persons with dementia: a narrative review.

    Science.gov (United States)

    Low, Lee-Fay; Fletcher, Jennifer

    2015-10-01

    Worldwide trends of increasing dementia prevalence, have put economic and workforce pressures to shifting care for persons with dementia from residential care to home care. We reviewed the effects of the four dominant models of home care delivery on outcomes for community-dwelling persons with dementia. These models are: case management, integrated care, consumer directed care, and restorative care. This narrative review describes benefits and possible drawbacks for persons with dementia outcomes and elements that comprise successful programs. Case management for persons with dementia may increase use of community-based services and delay nursing home admission. Integrated care is associated with greater client satisfaction, increased use of community based services, and reduced hospital days however the clinical impacts on persons with dementia and their carers are not known. Consumer directed care increases satisfaction with care and service usage, but had little effect on clinical outcomes. Restorative models of home care have been shown to improve function and quality of life however these trials have excluded persons with dementia, with the exception of a pilot study. There has been a little research into models of home care for people with dementia, and no head-to-head comparison of the different models. Research to inform evidence-based policy and service delivery for people with dementia needs to evaluate both the impact of different models on outcomes, and investigate how to best deliver these models to maximize outcomes.

  18. A proposed clinical decision support architecture capable of supporting whole genome sequence information.

    Science.gov (United States)

    Welch, Brandon M; Loya, Salvador Rodriguez; Eilbeck, Karen; Kawamoto, Kensaku

    2014-04-04

    Whole genome sequence (WGS) information may soon be widely available to help clinicians personalize the care and treatment of patients. However, considerable barriers exist, which may hinder the effective utilization of WGS information in a routine clinical care setting. Clinical decision support (CDS) offers a potential solution to overcome such barriers and to facilitate the effective use of WGS information in the clinic. However, genomic information is complex and will require significant considerations when developing CDS capabilities. As such, this manuscript lays out a conceptual framework for a CDS architecture designed to deliver WGS-guided CDS within the clinical workflow. To handle the complexity and breadth of WGS information, the proposed CDS framework leverages service-oriented capabilities and orchestrates the interaction of several independently-managed components. These independently-managed components include the genome variant knowledge base, the genome database, the CDS knowledge base, a CDS controller and the electronic health record (EHR). A key design feature is that genome data can be stored separately from the EHR. This paper describes in detail: (1) each component of the architecture; (2) the interaction of the components; and (3) how the architecture attempts to overcome the challenges associated with WGS information. We believe that service-oriented CDS capabilities will be essential to using WGS information for personalized medicine.

  19. A study of the NRPB fast neutron personal monitoring service

    International Nuclear Information System (INIS)

    Bartlett, D.T.; Knight, A.; Marshall, T.O.

    1975-10-01

    The NRPB Fast Neutron Personal Monitoring Service has been reviewed and modifications have been, or are being, introduced to improve the accuracy and reliability of the nuclear emulsion dosemeter employed by the Service. This report presents the conclusions of the study. Experimental results of the investigations undertaken in the course of this study, together with full details of the dosemeter and Service, are appended. (author)

  20. Integrating Personalized and Community Services for Mobile Travel Planning and Management

    Science.gov (United States)

    Yu, Chien-Chih

    Personalized and community services have been noted as keys to enhance and facilitate e-tourism as well as mobile applications. This paper aims at proposing an integrated service framework for combining personalized and community functions to support mobile travel planning and management. Major mobile tourism related planning and decision support functions specified include personalized profile management, information search and notification, evaluation and recommendation, do-it-yourself planning and design, community and collaboration management, auction and negotiation, transaction and payment, as well as trip tracking and quality control. A system implementation process with an example prototype is also presented for illustrating the feasibility and effectiveness of the proposed system framework, process model, and development methodology.

  1. Development and evaluation of a genomics training program for community health workers in Texas.

    Science.gov (United States)

    Chen, Lei-Shih; Zhao, Shixi; Stelzig, Donaji; Dhar, Shweta U; Eble, Tanya; Yeh, Yu-Chen; Kwok, Oi-Man

    2018-01-04

    PurposeGenomics services have the potential to reduce incidence and mortality of diseases by providing individualized, family health history (FHH)-based prevention strategies to clients. These services may benefit from the involvement of community health workers (CHWs) in the provision of FHH-based genomics education and services, as CHWs are frontline public health workers and lay health educators, who share similar ethnicities, languages, socioeconomic statuses, and life experiences with the communities they serve. We developed, implemented, and evaluated the FHH-based genomics training program for CHWs.MethodsThis theory- and evidence-based FHH-focused genomics curriculum was developed by an interdisciplinary team. Full-day workshops in English and Spanish were delivered to 145 Texas CHWs (91.6% were Hispanic/black). Preworkshop, postworkshop, and 3-month follow-up data were collected.ResultsCHWs significantly improved their attitudes, intention, self-efficacy, and knowledge regarding adopting FHH-based genomics into their practice after the workshops. At 3-month follow-up, these scores remained higher, and there was a significant increase in CHWs' genomics practices.ConclusionThis FHH-based genomics training successfully educated Texas CHWs, and the outcomes were promising. Dissemination of training to CHWs in and outside of Texas is needed to promote better access to and delivery of personalized genomics services for the lay and underserved communities.GENETICS in MEDICINE advance online publication, 4 January 2018; doi:10.1038/gim.2017.236.

  2. Derivation and validation of the Personal Support Algorithm: an evidence-based framework to inform allocation of personal support services in home and community care.

    Science.gov (United States)

    Sinn, Chi-Ling Joanna; Jones, Aaron; McMullan, Janet Legge; Ackerman, Nancy; Curtin-Telegdi, Nancy; Eckel, Leslie; Hirdes, John P

    2017-11-25

    Personal support services enable many individuals to stay in their homes, but there are no standard ways to classify need for functional support in home and community care settings. The goal of this project was to develop an evidence-based clinical tool to inform service planning while allowing for flexibility in care coordinator judgment in response to patient and family circumstances. The sample included 128,169 Ontario home care patients assessed in 2013 and 25,800 Ontario community support clients assessed between 2014 and 2016. Independent variables were drawn from the Resident Assessment Instrument-Home Care and interRAI Community Health Assessment that are standardised, comprehensive, and fully compatible clinical assessments. Clinical expertise and regression analyses identified candidate variables that were entered into decision tree models. The primary dependent variable was the weekly hours of personal support calculated based on the record of billed services. The Personal Support Algorithm classified need for personal support into six groups with a 32-fold difference in average billed hours of personal support services between the highest and lowest group. The algorithm explained 30.8% of the variability in billed personal support services. Care coordinators and managers reported that the guidelines based on the algorithm classification were consistent with their clinical judgment and current practice. The Personal Support Algorithm provides a structured yet flexible decision-support framework that may facilitate a more transparent and equitable approach to the allocation of personal support services.

  3. Derivation and validation of the Personal Support Algorithm: an evidence-based framework to inform allocation of personal support services in home and community care

    Directory of Open Access Journals (Sweden)

    Chi-Ling Joanna Sinn

    2017-11-01

    Full Text Available Abstract Background Personal support services enable many individuals to stay in their homes, but there are no standard ways to classify need for functional support in home and community care settings. The goal of this project was to develop an evidence-based clinical tool to inform service planning while allowing for flexibility in care coordinator judgment in response to patient and family circumstances. Methods The sample included 128,169 Ontario home care patients assessed in 2013 and 25,800 Ontario community support clients assessed between 2014 and 2016. Independent variables were drawn from the Resident Assessment Instrument-Home Care and interRAI Community Health Assessment that are standardised, comprehensive, and fully compatible clinical assessments. Clinical expertise and regression analyses identified candidate variables that were entered into decision tree models. The primary dependent variable was the weekly hours of personal support calculated based on the record of billed services. Results The Personal Support Algorithm classified need for personal support into six groups with a 32-fold difference in average billed hours of personal support services between the highest and lowest group. The algorithm explained 30.8% of the variability in billed personal support services. Care coordinators and managers reported that the guidelines based on the algorithm classification were consistent with their clinical judgment and current practice. Conclusions The Personal Support Algorithm provides a structured yet flexible decision-support framework that may facilitate a more transparent and equitable approach to the allocation of personal support services.

  4. Genome Engineering for Personalized Arthritis Therapeutics.

    Science.gov (United States)

    Adkar, Shaunak S; Brunger, Jonathan M; Willard, Vincent P; Wu, Chia-Lung; Gersbach, Charles A; Guilak, Farshid

    2017-10-01

    Arthritis represents a family of complex joint pathologies responsible for the majority of musculoskeletal conditions. Nearly all diseases within this family, including osteoarthritis, rheumatoid arthritis, and juvenile idiopathic arthritis, are chronic conditions with few or no disease-modifying therapeutics available. Advances in genome engineering technology, most recently with CRISPR-Cas9, have revolutionized our ability to interrogate and validate genetic and epigenetic elements associated with chronic diseases such as arthritis. These technologies, together with cell reprogramming methods, including the use of induced pluripotent stem cells, provide a platform for human disease modeling. We summarize new evidence from genome-wide association studies and genomics that substantiates a genetic basis for arthritis pathogenesis. We also review the potential contributions of genome engineering in the development of new arthritis therapeutics. Copyright © 2017 Elsevier Ltd. All rights reserved.

  5. Interoperable eHealth Platform for Personalized Smart Services

    DEFF Research Database (Denmark)

    Mihaylov, Mihail Rumenov; Mihovska, Albena Dimitrova; Kyriazakos, Sofoklis

    2015-01-01

    personalized context-aware applications to serve the user's needs. This paper proposes the use of advised sensing, context-aware and cloud-based lifestyle reasoning to design an innovative eHealth platform that supports highly personalized smart services to primary users. The architecture of the platform has...... been designed in accordance with the interoperability requirements and standards as proposed by ITU-T and Continua Alliance. In particular, we define the interface dependencies and functional requirements needed, to allow eCare and eHealth vendors to manufacture interoperable sensors, ambient and home...

  6. [Personalizing the reference level: gold standard to evaluate the quality of service perceived].

    Science.gov (United States)

    Rodrigo-Rincón, I; Reyes-Pérez, M; Martínez-Lozano, M E

    2014-01-01

    To know the cutoff point at which in-house Nuclear Medicine Department (MND) customers consider that the quality of service is good (personalized cutoff). We conducted a survey of the professionals who had requested at least 5 tests to the Nuclear Medicine Department. A total of 71 doctors responded (response rate: 30%). A question was added to the questionnaire for the user to establish a cutoff point for which they would consider the quality of service as good. The quality non-conformities, areas of improvement and strong points of the six questions measuring the quality of service (Likert scale 0 to 10) were compared with two different thresholds: personalized cutoff and one proposed by the service itself a priori. Test statistics: binomial and Student's t-test for paired data. A cutoff value of 7 was proposed by the service as a reference while 68.1% of respondents suggested a cutoff above 7 points (mean 7.9 points). The 6 elements of perceived quality were considered strong points with the cutoff proposed by the MND, while there were 3 detected with the personalized threshold. Thirteen percent of the answers were nonconformities with the service cutoff versus 19.2% with the personalized one, the differences being statistically significant (difference 95% CI 6.44%:0,83-12.06). The final image of the perceived quality of an in-house customer is different when using the cutoff established by the Department versus the personalized cutoff given by the respondent. Copyright © 2013 Elsevier España, S.L. and SEMNIM. All rights reserved.

  7. Genomic research and data-mining technology: implications for personal privacy and informed consent.

    Science.gov (United States)

    Tavani, Herman T

    2004-01-01

    This essay examines issues involving personal privacy and informed consent that arise at the intersection of information and communication technology (ICT) and population genomics research. I begin by briefly examining the ethical, legal, and social implications (ELSI) program requirements that were established to guide researchers working on the Human Genome Project (HGP). Next I consider a case illustration involving deCODE Genetics, a privately owned genetic company in Iceland, which raises some ethical concerns that are not clearly addressed in the current ELSI guidelines. The deCODE case also illustrates some ways in which an ICT technique known as data mining has both aided and posed special challenges for researchers working in the field of population genomics. On the one hand, data-mining tools have greatly assisted researchers in mapping the human genome and in identifying certain "disease genes" common in specific populations (which, in turn, has accelerated the process of finding cures for diseases tha affect those populations). On the other hand, this technology has significantly threatened the privacy of research subjects participating in population genomics studies, who may, unwittingly, contribute to the construction of new groups (based on arbitrary and non-obvious patterns and statistical correlations) that put those subjects at risk for discrimination and stigmatization. In the final section of this paper I examine some ways in which the use of data mining in the context of population genomics research poses a critical challenge for the principle of informed consent, which traditionally has played a central role in protecting the privacy interests of research subjects participating in epidemiological studies.

  8. Gaining competitive advantage in personal dosimetry services through ISO 9001 certification

    International Nuclear Information System (INIS)

    Noriah, M.A.

    2005-01-01

    Full text: In Malaysia, the harmonization of dose monitoring for almost 12,000 radiation workers is assigned to the Secondary Standard Dosimetry Laboratory of Malaysian Institute for Nuclear Technology Research, SSDL-MINT. Established in 1980, SSDL-MINT is responsible for improving personal and workplace safety by providing high quality personal dosimetry services. It is important to demonstrate that the performance of personal dosimetry meets recognized standards, to ensure radiation doses to individual workers are within the safe limits and to verify compliance with dose limits. Concern on the quality of personal dosimetry service began to be expressed in 2000. The concern led to the ISO certification, which brought an unprecedented effort characterized by high degree coordination, proper documentation and well trained of personal dosimetry operators. These huge efforts resulted with certification ISO 9002:1994 by the SIRIM International QAS Sdn. Bhd. in January 2002. The adoption of these requirements for the ISO 9002 standard makes routine handling of the process easier, and increases the reliability and effectiveness of the services. This helps to increase the quality and uniformity of personal dosimetry. The revision of the ISO 9002:1994 to ISO 9001:2000 necessitated SSDL-MINT revising its quality management system. The work began in middle 2002, and by May 2003, SSDL-MINT has been upgraded to ISO 9001:2000. Certification to the ISO 9001:2000 demonstrates our ability to consistency provide service that meets the requirements of the customer and the regulatory authority. These includes: improved consistency of service / product performance and therefore higher customer satisfaction levels; uniformity in work processes across organizations; simplified and more uniform structure for quality documents; improved customer perception of the organizations image, culture and performance; reduced number of product and process non-conformances; greater employee

  9. An intelligent tele-healthcare environment offering person-centric and wellness-maintenance services.

    Science.gov (United States)

    Abidi, S S

    2001-06-01

    Worldwide healthcare delivery trends are undergoing a subtle paradigm shift--patient centered services as opposed to provider centered services and wellness maintenance as opposed to illness management. In this paper we present a Tele-Healthcare project TIDE--Tele-Healthcare Information and Diagnostic Environment. TIDE manifests an 'intelligent' healthcare environment that aims to ensure lifelong coverage of person-specific health maintenance decision-support services--i.e., both wellness maintenance and illness management services--ubiquitously available via the Internet/WWW. Taking on an all-encompassing health maintenance role--spanning from wellness to illness issues--the functionality of TIDE involves the generation and delivery of (a) Personalized, Pro-active, Persistent, Perpetual, and Present wellness maintenance services, and (b) remote diagnostic services for managing noncritical illnesses. Technically, TIDE is an amalgamation of diverse computer technologies--Artificial Intelligence, Internet, Multimedia, Databases, and Medical Informatics--to implement a sophisticated healthcare delivery infostructure.

  10. A Proposed Clinical Decision Support Architecture Capable of Supporting Whole Genome Sequence Information

    Directory of Open Access Journals (Sweden)

    Brandon M. Welch

    2014-04-01

    Full Text Available Whole genome sequence (WGS information may soon be widely available to help clinicians personalize the care and treatment of patients. However, considerable barriers exist, which may hinder the effective utilization of WGS information in a routine clinical care setting. Clinical decision support (CDS offers a potential solution to overcome such barriers and to facilitate the effective use of WGS information in the clinic. However, genomic information is complex and will require significant considerations when developing CDS capabilities. As such, this manuscript lays out a conceptual framework for a CDS architecture designed to deliver WGS-guided CDS within the clinical workflow. To handle the complexity and breadth of WGS information, the proposed CDS framework leverages service-oriented capabilities and orchestrates the interaction of several independently-managed components. These independently-managed components include the genome variant knowledge base, the genome database, the CDS knowledge base, a CDS controller and the electronic health record (EHR. A key design feature is that genome data can be stored separately from the EHR. This paper describes in detail: (1 each component of the architecture; (2 the interaction of the components; and (3 how the architecture attempts to overcome the challenges associated with WGS information. We believe that service-oriented CDS capabilities will be essential to using WGS information for personalized medicine.

  11. Personal technology use by U.S. military service members and veterans: an update.

    Science.gov (United States)

    Bush, Nigel E; Wheeler, William M

    2015-04-01

    Although personal electronic devices, such as mobile phones, computers, and tablets, increasingly are being leveraged as vehicles for health in the civilian world, almost nothing is known about personal technology use in the U.S. military. In 2012 we conducted a unique survey of personal technologies used by U.S. military service members. However, with the rapidly growing sophistication of personal technology and changes in consumer habits, that knowledge must be continuously updated to be useful. Accordingly, we recently surveyed new samples of active duty service members, National Guard and Reserve, and veterans. We collected data by online surveys in 2013 from 239 active, inactive, and former service members. Online surveys were completed in-person via laptop computers at a large military installation and remotely via Web-based surveys posted on the Army Knowledge Online Web site and on a Defense Center Facebook social media channel. We measured high rates of personal technology use by service members at home across popular electronic media. The most dramatic change since our earlier survey was the tremendous increase in mobile phone use at home for a wide variety of purposes. Participants also reported moderate non-work uses of computers and tablets while on recent deployment to Iraq and Afghanistan, but almost no mobile phone use, ostensibly because of military restrictions in the war zone. These latest results will enable researchers and technology developers target their efforts on the most promising and popular technologies for psychological health in the military.

  12. Personalized medicine: genome, e-health and intelligent systems. Part 1. Genomics and monitoring of clinical data

    Directory of Open Access Journals (Sweden)

    B. A. Kobrinskii

    2017-01-01

    Full Text Available The transition to personalized medicine in practical terms should combine the solution of the genomics problems as the basis for possible diseases and phenotypic manifestations that are markers and early signs of emerging pathological changes. Most diseases have their first principles in childhood. Therefore, in all age groups, it is necessary to monitor the minimum deviations and their dynamics, use mobile devices for this purpose and accumulate the received data. Processing big data (Big Data will provide more informative information. On this basis it will be possible to identify analogs for targeted therapy in similar variants of diseases in large databases of publications on the problem of interest.

  13. The Study on the Preferences of Customer Personal Values with Chinese Culture Background in Services

    Science.gov (United States)

    Li, Yi; Zhao, Hong; Yang, Yue

    Customer personal values are the important factors which affect customer behaviors, and they guide and decide the customer's attitudes and behaviors on the products or the services. The paper thinks there are only several important customer personal values to guide customer's decisions, and these values will have -strong cultural differences. This study focuses on discussing the preferences of customer personal values with Chinese culture background when customers consume service and analyzes on the customer preferences of customer personal values with the deep interview method. After interviewing 16 responders with the semi-structured questionnaires, the study finds out some interesting results: (1) Some customers have recognized the existent of customer personal values, even though customer perceived values still have the strong influences on customer behaviors. (2) As they pursue to high quality lives, customers enjoy the lives in easy and pleasure way and care about the safe of the family. Quick response, simple and professional services contribute to enhance the experiences of easy and pleasure lives. (3) Non-rational consumers need the respect from the staff and the companies seriously. In comparison, the rational customers care less about the respect. (4) The sociable requirements have become a common consuming psychology of the customers. More and more customers try to gain the friends by consuming some services. (5) The preferences of customer personal values have a close relationship with the Chinese culture, such as collective values, family conception and "face" culture. The results benefit for service companies improving service brands and service quality.

  14. Data partitioning enables the use of standard SOAP Web Services in genome-scale workflows.

    Science.gov (United States)

    Sztromwasser, Pawel; Puntervoll, Pål; Petersen, Kjell

    2011-07-26

    Biological databases and computational biology tools are provided by research groups around the world, and made accessible on the Web. Combining these resources is a common practice in bioinformatics, but integration of heterogeneous and often distributed tools and datasets can be challenging. To date, this challenge has been commonly addressed in a pragmatic way, by tedious and error-prone scripting. Recently however a more reliable technique has been identified and proposed as the platform that would tie together bioinformatics resources, namely Web Services. In the last decade the Web Services have spread wide in bioinformatics, and earned the title of recommended technology. However, in the era of high-throughput experimentation, a major concern regarding Web Services is their ability to handle large-scale data traffic. We propose a stream-like communication pattern for standard SOAP Web Services, that enables efficient flow of large data traffic between a workflow orchestrator and Web Services. We evaluated the data-partitioning strategy by comparing it with typical communication patterns on an example pipeline for genomic sequence annotation. The results show that data-partitioning lowers resource demands of services and increases their throughput, which in consequence allows to execute in-silico experiments on genome-scale, using standard SOAP Web Services and workflows. As a proof-of-principle we annotated an RNA-seq dataset using a plain BPEL workflow engine.

  15. Data partitioning enables the use of standard SOAP Web Services in genome-scale workflows

    Directory of Open Access Journals (Sweden)

    Sztromwasser Paweł

    2011-06-01

    Full Text Available Biological databases and computational biology tools are provided by research groups around the world, and made accessible on the Web. Combining these resources is a common practice in bioinformatics, but integration of heterogeneous and often distributed tools and datasets can be challenging. To date, this challenge has been commonly addressed in a pragmatic way, by tedious and error-prone scripting. Recently however a more reliable technique has been identified and proposed as the platform that would tie together bioinformatics resources, namely Web Services. In the last decade the Web Services have spread wide in bioinformatics, and earned the title of recommended technology. However, in the era of high-throughput experimentation, a major concern regarding Web Services is their ability to handle large-scale data traffic. We propose a stream-like communication pattern for standard SOAP Web Services, that enables efficient flow of large data traffic between a workflow orchestrator and Web Services. We evaluated the data-partitioning strategy by comparing it with typical communication patterns on an example pipeline for genomic sequence annotation. The results show that data-partitioning lowers resource demands of services and increases their throughput, which in consequence allows to execute in-silico experiments on genome-scale, using standard SOAP Web Services and workflows. As a proof-of-principle we annotated an RNA-seq dataset using a plain BPEL workflow engine.

  16. Validated Competency Task Lists for General Merchandise Retailing, Food Service Management, and Business and Personal Services Marketing.

    Science.gov (United States)

    Faught, Suzanne G.

    This publication contains competency task lists that address principal entry-level and career-sustaining jobs in the occupational categories of general merchandise retailing, food service management, and business and personal services marketing. Section I, Development of the Competency Task Lists, provides details on how the competencies were…

  17. The UK Human Genome Mapping Project online computing service.

    Science.gov (United States)

    Rysavy, F R; Bishop, M J; Gibbs, G P; Williams, G W

    1992-04-01

    This paper presents an overview of computing and networking facilities developed by the Medical Research Council to provide online computing support to the Human Genome Mapping Project (HGMP) in the UK. The facility is connected to a number of other computing facilities in various centres of genetics and molecular biology research excellence, either directly via high-speed links or through national and international wide-area networks. The paper describes the design and implementation of the current system, a 'client/server' network of Sun, IBM, DEC and Apple servers, gateways and workstations. A short outline of online computing services currently delivered by this system to the UK human genetics research community is also provided. More information about the services and their availability could be obtained by a direct approach to the UK HGMP-RC.

  18. Study of the personal dosimetry service by thermoluminiscence

    International Nuclear Information System (INIS)

    Penaherrera, Patricio; Buitron, Susana; Prado, Elizabeth; Ceron Fabiola

    1992-01-01

    This paper is concerned with the personal dosimetry service given by the Ecuadorian Atomic Energy Commission to radiation exposed workers in Ecuador. The study has taken in consideration the number of professionals working in Ecuador by province and by area of work, and also the radiation doses received by them during the period 1987-1990

  19. Personalized commissioning, public spaces: the limits of the market in English social care services.

    Science.gov (United States)

    Needham, Catherine

    2013-01-01

    The article explores the implications of personal budgets within English social care services, which position the individual as market actor. Rooting the research in the broader personalization agenda, the study looks at the limitations of the market in relation to individual purchase of private goods (e.g. home care), in the pooling of funds to purchase group services and in the provision of public goods such as building-based services. The article takes a multi-method approach, combining an interpretive focus on the framing of the personal budget-holder by advocates of personalization with national evaluation data, and data from a small survey of day centre workers. The article identifies three framings of the individual budget-holder articulated by advocates of personalization. The first is that personal budget-holders will be empowered market actors, commissioning the services they need. The second is that budget-holders will pool resources with others to purchase group services in order to broaden the range of options available to them. The third is that services which cannot be disaggregated into individual or group budgets - such as day centres - are not valued by service users. The article looks at the evaluation data on these three claims in turn. It identifies four limitations to the capacity of people to purchase care goods on an individual basis: lack of transparency in allocating budgets, complexity in managing a budget, excessive auditing of spending and lack of responsiveness from the provider market. Pooling of budgets to purchase collective services is found to be underdeveloped, and hampered by the complexity which is a broader limitation on personal budgets. Day centres are found to be closing not in response to commissioning decisions by individual budget-holders but because of decommissioning by local authorities, minimising the scope for individuals to express a preference for this type of care. The survey highlights patterns of day centre

  20. Recovery in Borderline Personality Disorder (BPD: a qualitative study of service users' perspectives.

    Directory of Open Access Journals (Sweden)

    Christina Katsakou

    Full Text Available Symptom improvement in Borderline Personality Disorder (BPD is more common than previously hypothesised. However, it remains unclear whether it reflects service users' personal goals of recovery. The present study aimed to explore what service users with BPD view as recovery.48 service users were recruited from secondary mental health services and their views on their personal goals and the meaning of recovery were explored in in-depth semi-structured interviews. The study drew on grounded theory and thematic analysis.Service users believed that recovery involved developing self-acceptance and self-confidence, gaining control over emotions, improving relationships, employment, and making progress in symptoms like suicidality and self-harming. They felt that psychotherapies for BPD often had an extreme focus on specific areas, like self-harming or relationships, and that some of their goals were neglected. Although full recovery was seen as a distant goal, interviewees felt that they could learn how to deal with their problems in more effective ways and make meaningful progress in their lives.Specialist therapies for BPD explicitly address some of the recovery goals that are important to service users, whereas other goals are only indirectly or poorly addressed. Professionals might need to work with service users towards devising comprehensive individualised case formulations, including all treatment targets that are important to service users, their priorities, and long-term plans on how their targets might be met and which services might be involved.

  1. An approved personal dosimetry service based on an electronic dosimeter

    International Nuclear Information System (INIS)

    Marshall, T.O.; Bartlett, D.T.; Burgess, P.H.; Campbell, J.I.; Hill, C.E.; Pook, E.A.; Sandford, D.J.

    1991-01-01

    At the Second Conference on Radiation Protection and Dosimetry a paper was presented which, in part, announced the development of an electronic dosimeter to be undertaken in the UK by the National Radiological Protection Board (NRPB) and Siemens Plessey Controls Ltd. This dosimeter was to be of a standard suitable for use as the basis of an approved personal dosimetry service for photon and beta radiations. The project has progressed extremely well and dosimeters and readers are about to become commercially available. The system and the specification of the dosimeter are presented. The NRPB is in the process of applying for approval by the Health and Safety Executive (HSE) to operate as personal monitoring service based on this dosimeter. As part of the approval procedure the dosimeter is being type tested and is also undergoing an HSE performance test and wearer trials. The tests and the wearer trials are described and a summary of the results to date presented. The way in which the service will be organized and operated is described and a comparison is made between the running of the service and others based on passive dosimeters at NRPB

  2. Reference architecture of application services for personal wellbeing information management.

    Science.gov (United States)

    Tuomainen, Mika; Mykkänen, Juha

    2011-01-01

    Personal information management has been proposed as an important enabler for individual empowerment concerning citizens' wellbeing and health information. In the MyWellbeing project in Finland, a strictly citizen-driven concept of "Coper" and related architectural and functional guidelines have been specified. We present a reference architecture and a set of identified application services to support personal wellbeing information management. In addition, the related standards and developments are discussed.

  3. Ion torrent personal genome machine sequencing for genomic typing of Neisseria meningitidis for rapid determination of multiple layers of typing information.

    Science.gov (United States)

    Vogel, Ulrich; Szczepanowski, Rafael; Claus, Heike; Jünemann, Sebastian; Prior, Karola; Harmsen, Dag

    2012-06-01

    Neisseria meningitidis causes invasive meningococcal disease in infants, toddlers, and adolescents worldwide. DNA sequence-based typing, including multilocus sequence typing, analysis of genetic determinants of antibiotic resistance, and sequence typing of vaccine antigens, has become the standard for molecular epidemiology of the organism. However, PCR of multiple targets and consecutive Sanger sequencing provide logistic constraints to reference laboratories. Taking advantage of the recent development of benchtop next-generation sequencers (NGSs) and of BIGSdb, a database accommodating and analyzing genome sequence data, we therefore explored the feasibility and accuracy of Ion Torrent Personal Genome Machine (PGM) sequencing for genomic typing of meningococci. Three strains from a previous meningococcus serogroup B community outbreak were selected to compare conventional typing results with data generated by semiconductor chip-based sequencing. In addition, sequencing of the meningococcal type strain MC58 provided information about the general performance of the technology. The PGM technology generated sequence information for all target genes addressed. The results were 100% concordant with conventional typing results, with no further editing being necessary. In addition, the amount of typing information, i.e., nucleotides and target genes analyzed, could be substantially increased by the combined use of genome sequencing and BIGSdb compared to conventional methods. In the near future, affordable and fast benchtop NGS machines like the PGM might enable reference laboratories to switch to genomic typing on a routine basis. This will reduce workloads and rapidly provide information for laboratory surveillance, outbreak investigation, assessment of vaccine preventability, and antibiotic resistance gene monitoring.

  4. 48 CFR 731.205-6 - Compensation for personal services.

    Science.gov (United States)

    2010-10-01

    ... Organizations 731.205-6 Compensation for personal services. (a) General. When establishing the workweek for... base salary plus overseas recruitment incentive, if any (see AIDAR 731.205-70) exceeds the USAID... such approval after internal Agency procedures for review/approval of salaries in excess of the USAID...

  5. The Neutron Personal Dosimetry Service of the Centre for Radiation, Chemical and Environmental Hazards, PHE-UK

    International Nuclear Information System (INIS)

    Campo Blanco, X.

    2015-01-01

    The Centre for Radiation, Chemical and Environmental Hazards (CRCEH), that belongs to Public Health England (PHE), hosts the official Neutron Personal Dosimetry Service of the United Kingdom. They use etched-track detectors, made of a material called PADC (poly-allyl diglycol carbonate), to determinate de neutron personal dose. A two weeks visit has been made to this center, in order to learn about the facilities, the methods employed and the legislative framework of the Neutron Personal Dosimetry Service. In this work the main results of this visits are shown, which are interesting for the future development of an official neutron personal dosimetry service in Spain.

  6. Gatekeepers or intermediaries? The role of clinicians in commercial genomic testing.

    Directory of Open Access Journals (Sweden)

    Michelle L McGowan

    Full Text Available Many commentators on "direct-to-consumer" genetic risk information have raised concerns that giving results to individuals with insufficient knowledge and training in genomics may harm consumers, the health care system, and society. In response, several commercial laboratories offering genomic risk profiling have shifted to more traditional "direct-to-provider" (DTP marketing strategies, repositioning clinicians as the intended recipients of advertising of laboratory services and as gatekeepers to personal genomic information. Increasing popularity of next generation sequencing puts a premium on ensuring that those who are charged with interpreting, translating, communicating and managing commercial genomic risk information are appropriately equipped for the job. To shed light on their gatekeeping role, we conducted a study to assess how and why early clinical users of genomic risk assessment incorporate these tools in their clinical practices and how they interpret genomic information for their patients.We conducted qualitative in-depth interviews with 18 clinicians providing genomic risk assessment services to their patients in partnership with DNA Direct and Navigenics. Our findings suggest that clinicians learned most of what they knew about genomics directly from the commercial laboratories. Clinicians rely on the expertise of the commercial laboratories without the ability to critically evaluate the knowledge or assess risks.DTP service delivery model cannot guarantee that providers will have adequate expertise or sound clinical judgment. Even if clinicians want greater genomic knowledge, the current market structure is unlikely to build the independent substantive expertise of clinicians, but rather promote its continued outsourcing. Because commercial laboratories have the most "skin in the game" financially, genetics professionals and policymakers should scrutinize the scientific validity and clinical soundness of the process by which

  7. Gatekeepers or intermediaries? The role of clinicians in commercial genomic testing.

    Science.gov (United States)

    McGowan, Michelle L; Fishman, Jennifer R; Settersten, Richard A; Lambrix, Marcie A; Juengst, Eric T

    2014-01-01

    Many commentators on "direct-to-consumer" genetic risk information have raised concerns that giving results to individuals with insufficient knowledge and training in genomics may harm consumers, the health care system, and society. In response, several commercial laboratories offering genomic risk profiling have shifted to more traditional "direct-to-provider" (DTP) marketing strategies, repositioning clinicians as the intended recipients of advertising of laboratory services and as gatekeepers to personal genomic information. Increasing popularity of next generation sequencing puts a premium on ensuring that those who are charged with interpreting, translating, communicating and managing commercial genomic risk information are appropriately equipped for the job. To shed light on their gatekeeping role, we conducted a study to assess how and why early clinical users of genomic risk assessment incorporate these tools in their clinical practices and how they interpret genomic information for their patients. We conducted qualitative in-depth interviews with 18 clinicians providing genomic risk assessment services to their patients in partnership with DNA Direct and Navigenics. Our findings suggest that clinicians learned most of what they knew about genomics directly from the commercial laboratories. Clinicians rely on the expertise of the commercial laboratories without the ability to critically evaluate the knowledge or assess risks. DTP service delivery model cannot guarantee that providers will have adequate expertise or sound clinical judgment. Even if clinicians want greater genomic knowledge, the current market structure is unlikely to build the independent substantive expertise of clinicians, but rather promote its continued outsourcing. Because commercial laboratories have the most "skin in the game" financially, genetics professionals and policymakers should scrutinize the scientific validity and clinical soundness of the process by which these laboratories

  8. Human Genome Sequencing in Health and Disease

    Science.gov (United States)

    Gonzaga-Jauregui, Claudia; Lupski, James R.; Gibbs, Richard A.

    2013-01-01

    Following the “finished,” euchromatic, haploid human reference genome sequence, the rapid development of novel, faster, and cheaper sequencing technologies is making possible the era of personalized human genomics. Personal diploid human genome sequences have been generated, and each has contributed to our better understanding of variation in the human genome. We have consequently begun to appreciate the vastness of individual genetic variation from single nucleotide to structural variants. Translation of genome-scale variation into medically useful information is, however, in its infancy. This review summarizes the initial steps undertaken in clinical implementation of personal genome information, and describes the application of whole-genome and exome sequencing to identify the cause of genetic diseases and to suggest adjuvant therapies. Better analysis tools and a deeper understanding of the biology of our genome are necessary in order to decipher, interpret, and optimize clinical utility of what the variation in the human genome can teach us. Personal genome sequencing may eventually become an instrument of common medical practice, providing information that assists in the formulation of a differential diagnosis. We outline herein some of the remaining challenges. PMID:22248320

  9. Innovative methods and tools for professionals working in supported living services for intellectually disabled persons.

    Science.gov (United States)

    Gruiz, Katalin

    2015-01-01

    Autonomy of mid-seriously and seriously intellectually disabled persons is encouraged both by legislations on human rights and the modern social care and services. The process leading to the maximum possible autonomy is illustrated by a developmental spiral in our model. Specialty of the development is that the personal educational projects are realized during everyday activities. The process requires conscious professionals with an empowering and motivating attitude, with adult relationship to the intellectually disabled persons and versatile skills and tools. In this educational relationship the social professional and the supported person are equal partners moving together along the spiral of human development. An innovative tool-battery has been developed aiding support-staff in the 'pedagogical' task embedded into everyday social services. The tool-battery and its first application in supported living services of the Hungarian Down Foundation are introduced in this paper.

  10. Smartphone as a personal, pervasive health informatics services platform: literature review.

    Science.gov (United States)

    Wac, K

    2012-01-01

    The article provides an overview of current trends in personal sensor, signal and imaging informatics, that are based on emerging mobile computing and communications technologies enclosed in a smartphone and enabling the provision of personal, pervasive health informatics services. The article reviews examples of these trends from the PubMed and Google scholar literature search engines, which, by no means claim to be complete, as the field is evolving and some recent advances may not be documented yet. There exist critical technological advances in the surveyed smartphone technologies, employed in provision and improvement of diagnosis, acute and chronic treatment and rehabilitation health services, as well as in education and training of healthcare practitioners. However, the most emerging trend relates to a routine application of these technologies in a prevention/wellness sector, helping its users in self-care to stay healthy. Smartphone-based personal health informatics services exist, but still have a long way to go to become an everyday, personalized healthcare-provisioning tool in the medical field and in a clinical practice. Key main challenge for their widespread adoption involve lack of user acceptance striving from variable credibility and reliability of applications and solutions as they a) lack evidence- based approach; b) have low levels of medical professional involvement in their design and content; c) are provided in an unreliable way, influencing negatively its usability; and, in some cases, d) being industry-driven, hence exposing bias in information provided, for example towards particular types of treatment or intervention procedures.

  11. Comparison of Teachers and Pre-Service Teachers with Respect to Personality Traits and Career Adaptability

    Science.gov (United States)

    Eryilmaz, Ali; Kara, Ahmet

    2017-01-01

    The aim of the study is to compare teachers and pre-service teachers in terms of personality traits and career adaptability. The relationships between personality traits and career adaptability are also investigated. A total of 176 pre-service teachers took part in the study, including 90 men and 76 women, and a total of 204 teachers took part in…

  12. 77 FR 40626 - RP9580.210, Personal Assistance Services in Shelters Fact Sheet

    Science.gov (United States)

    2012-07-10

    ... DEPARTMENT OF HOMELAND SECURITY Federal Emergency Management Agency [Docket ID FEMA-2012-0014] RP9580.210, Personal Assistance Services in Shelters Fact Sheet AGENCY: Federal Emergency Management... Management Agency (FEMA) is accepting comments on Recovery Fact Sheet RP9580.210, Personal Assistance...

  13. Career Pathing among General Administrative and Support Services Employees Based on Holland?s Typology of Personality Theory and Personal Style Inventory

    Science.gov (United States)

    Mendoza, Catalino N.

    2009-01-01

    The study is about the prevailing differences, commonalities and significant contributions of the career pathing among the general administrative and support services employees based on Holland's Typology of Personality Theory and Personal Style Inventory of selected higher educational institutions in Metro Manila.

  14. Hospitality, Recreation, and Personal Service Occupations: Grade 8. Cluster V.

    Science.gov (United States)

    Calhoun, Olivia H.

    A curriculum guide for grade 8, the document is devoted to the occupational cluster "Hospitality, Recreation, and Personal Service Occupations." It is divided into four units: recreational resources for education, employment, and professional opportunities; barbering and cosmetology; mortuary science; hotel-motel management. Each unit is…

  15. Privacy calculus and its utility for personalization services in e-commerce : An analysis of consumer decision-making

    NARCIS (Netherlands)

    Zhu, H.; Ou, Carol; van den Heuvel, Willem-Jan; Liu, H.W.

    Modern consumers increasingly embrace the personalization of services. Whether to disclose private information to companies for the sake of receiving personalized service is largely contingent to relative valuations and the utility of private information. Unfortunately, there is a lack of balanced

  16. On-call service of neurosurgeons in Germany: organization, use of communication services, and personal acceptance of modern technologies.

    Science.gov (United States)

    Brenke, Christopher; Lassel, Elke A; Terris, Darcey; Kurt, Aysel; Schmieder, Kirsten; Schoenberg, Stefan O; Weisser, Gerald

    2014-05-01

    A significant proportion of acute care neurosurgical patients present to hospital outside regular working hours. The objective of our study was to evaluate the structure of neurosurgical on-call services in Germany, the use of modern communication devices and teleradiology services, and the personal acceptance of modern technologies by neurosurgeons. A nationwide survey of all 141 neurosurgical departments in Germany was performed. The questionnaire consisted of two parts: one for neurosurgical departments and one for individual neurosurgeons. The questionnaire, available online and mailed in paper form, included 21 questions about on-call service structure; the availability and use of communication devices, teleradiology services, and other information services; and neurosurgeons' personal acceptance of modern technologies. The questionnaire return rate from departments was 63.1% (89/141), whereas 187 individual neurosurgeons responded. For 57.3% of departments, teleradiology services were available and were frequently used by 62.2% of neurosurgeons. A further 23.6% of departments described using smartphone screenshots of computed tomography (CT) images transmitted by multimedia messaging service (MMS), and 8.6% of images were described as sent by unencrypted email. Although 47.0% of neurosurgeons reported owning a smartphone, only 1.1% used their phone for on-call image communication. Teleradiology services were observed to be widely used by on-call neurosurgeons in Germany. Nevertheless, a significant number of departments appear to use outdated techniques or techniques that leave patient data unprotected. On-call neurosurgeons in Germany report a willingness to adopt more modern approaches, utilizing readily available smartphones or tablet technology. Georg Thieme Verlag KG Stuttgart · New York.

  17. The role and impact of personal faith and religion among genetic service providers.

    Science.gov (United States)

    Geller, Gail; Micco, Ellyn; Silver, Rachel J; Kolodner, Ken; Bernhardt, Barbara A

    2009-02-15

    This paper describes the impact of genetic service providers' personal faith and religious values on their experiences interacting with colleagues and patients. We surveyed 480 clinical geneticists (MDs), genetic counselors (GCs), and genetic nurses randomly selected from their professional associations, and then interviewed a sample of survey respondents. Outcomes included religiosity, coping with distress through spiritual beliefs, and personal value conflicts (PVCs). Two hundred fourteen providers completed the survey out of an estimated 348 eligible (61% response rate). Importance attributed to regular attendance at religious services ranged from 39% (not at all important) to 27% (very important). Reliance on religion and spiritual beliefs as a source of comfort ranged from 48% (never) to 33% (sometimes or often). Religiosity varied by discipline with 58% of nurses thinking regular attendance at religious services was moderately or very important as compared to 47% of GCs and 30% of MDs (P = 0.006). Ten percent of respondents had difficulty reconciling their own faith with being a genetics professional, 14% felt the need to hide their own faith from their colleagues or patients, 7% thought their professional stance was not consistent with their personal values, and 4% felt ostracized by the genetics community because of their personal beliefs. The experience of such PVCs was positively correlated with religiosity (r = 0.35; P religion among genetics professionals. (c) 2009 Wiley-Liss, Inc.

  18. Personal assistance services in the workplace: A literature review.

    Science.gov (United States)

    Dowler, Denetta L; Solovieva, Tatiana I; Walls, Richard T

    2011-10-01

    Personal assistance services (PAS) can be valuable adjuncts to the complement of accommodations that support workers with disabilities. This literature review explored the professional literature on the use of PAS in the workplace. Bibliographic sources were used to locate relevant research studies on the use of PAS in the workplace. The studies in this review used both qualitative and quantitative methods to identify current definitions of work-related and personal care-related PAS, agency-directed versus consumer-directed PAS, long-term and short-term funding issues, development of PAS policy, and barriers to successful implementation of PAS. The studies uncovered issues related to (a) recruiting, training, and retaining personal assistants, (b) employer concerns, (c) costs and benefits of workplace PAS, (d) wages and incentives for personal assistants, and (e) sources for financing PAS as a workplace accommodation. The findings reveal the value and benefits of effective PAS on the job. PAS can lead to successful employment of people with disabilities when other accommodations cannot provide adequate workplace support. Additionally, the evolution of workplace PAS is dependent on development of realistic PAS policy and funding options. Published by Elsevier Inc.

  19. Genomic research perspectives in Kazakhstan

    Directory of Open Access Journals (Sweden)

    Ainur Akilzhanova

    2014-01-01

    Full Text Available Introduction: Technological advancements rapidly propel the field of genome research. Advances in genetics and genomics such as the sequence of the human genome, the human haplotype map, open access databases, cheaper genotyping and chemical genomics, have transformed basic and translational biomedical research. Several projects in the field of genomic and personalized medicine have been conducted at the Center for Life Sciences in Nazarbayev University. The prioritized areas of research include: genomics of multifactorial diseases, cancer genomics, bioinformatics, genetics of infectious diseases and population genomics. At present, DNA-based risk assessment for common complex diseases, application of molecular signatures for cancer diagnosis and prognosis, genome-guided therapy, and dose selection of therapeutic drugs are the important issues in personalized medicine. Results: To further develop genomic and biomedical projects at Center for Life Sciences, the development of bioinformatics research and infrastructure and the establishment of new collaborations in the field are essential. Widespread use of genetic tools will allow the identification of diseases before the onset of clinical symptoms, the individualization of drug treatment, and could induce individual behavioral changes on the basis of calculated disease risk. However, many challenges remain for the successful translation of genomic knowledge and technologies into health advances, such as medicines and diagnostics. It is important to integrate research and education in the fields of genomics, personalized medicine, and bioinformatics, which will be possible with opening of the new Medical Faculty at Nazarbayev University. People in practice and training need to be educated about the key concepts of genomics and engaged so they can effectively apply their knowledge in a matter that will bring the era of genomic medicine to patient care. This requires the development of well

  20. Method of Improving Personal Name Search in Academic Information Service

    Directory of Open Access Journals (Sweden)

    Heejun Han

    2012-12-01

    Full Text Available All academic information on the web or elsewhere has its creator, that is, a subject who has created the information. The subject can be an individual, a group, or an institution, and can be a nation depending on the nature of the relevant information. Most information is composed of a title, an author, and contents. An essay which is under the academic information category has metadata including a title, an author, keyword, abstract, data about publication, place of publication, ISSN, and the like. A patent has metadata including the title, an applicant, an inventor, an attorney, IPC, number of application, and claims of the invention. Most web-based academic information services enable users to search the information by processing the meta-information. An important element is to search information by using the author field which corresponds to a personal name. This study suggests a method of efficient indexing and using the adjacent operation result ranking algorithm to which phrase search-based boosting elements are applied, and thus improving the accuracy of the search results of personal names. It also describes a method for providing the results of searching co-authors and related researchers in searching personal names. This method can be effectively applied to providing accurate and additional search results in the academic information services.

  1. Intercomparison of personal radiation monitoring services in the Asia/Pacific region

    International Nuclear Information System (INIS)

    Young, J.G.; Hargrave, N.J.

    1994-01-01

    The Australian Radiation Laboratory conducted an international intercomparison of personal radiation monitoring services in the Asia/Pacific region during 1991. Twenty nine organizations from sixteen countries took part in the study, with the People's Republic of China having eleven participants. Dosemeters incorporating thermoluminescent phosphors and conventional film were submitted for evaluation. Both types were irradiated at normal incidence on a phantom with 137 Cs gamma rays, X rays and beta radiation from a 90 Sr/ 90 Y source. Participants were requested to assess their dosemeters in terms of the new operational quantities of the ICRU for personal radiation monitoring, in particular the personal dose equivalents H p (0.07) and H p (10). (author)

  2. Obfuscatable multi-recipient re-encryption for secure privacy-preserving personal health record services.

    Science.gov (United States)

    Shi, Yang; Fan, Hongfei; Xiong, Guoyue

    2015-01-01

    With the rapid development of cloud computing techniques, it is attractive for personal health record (PHR) service providers to deploy their PHR applications and store the personal health data in the cloud. However, there could be a serious privacy leakage if the cloud-based system is intruded by attackers, which makes it necessary for the PHR service provider to encrypt all patients' health data on cloud servers. Existing techniques are insufficiently secure under circumstances where advanced threats are considered, or being inefficient when many recipients are involved. Therefore, the objectives of our solution are (1) providing a secure implementation of re-encryption in white-box attack contexts and (2) assuring the efficiency of the implementation even in multi-recipient cases. We designed the multi-recipient re-encryption functionality by randomness-reusing and protecting the implementation by obfuscation. The proposed solution is secure even in white-box attack contexts. Furthermore, a comparison with other related work shows that the computational cost of the proposed solution is lower. The proposed technique can serve as a building block for supporting secure, efficient and privacy-preserving personal health record service systems.

  3. Comparison of Teachers and Pre-Service Teachers with Respect to Personality Traits and Career Adaptability

    Directory of Open Access Journals (Sweden)

    Ali Eryılmaz

    2017-01-01

    Full Text Available The aim of the study is to compare teachers and pre-service teachers in terms of personality traits and career adaptability. The relationships between personality traits and career adaptability are also investigated. A total of 176 pre-service teachers took part in the study, including 90 men and 76 women, and a total of 204 teachers took part in the study, including 98 men and 106 women. The data collected included items from the Big Five Inventory and the Scale of Career Adaptability. The relationship between variables was examined by using independent t-tests for gender differences and multiple regression analysis techniques. According to the results, the level of career adaptability is higher in teachers than in pre-service teachers. Additionally, career exploration and plans were related to certain personality traits. The results of the present study might be used in career counselling, and also teacher profession development.

  4. Challenges and strategies for implementing genomic services in diverse settings: experiences from the Implementing GeNomics In pracTicE (IGNITE) network.

    Science.gov (United States)

    Sperber, Nina R; Carpenter, Janet S; Cavallari, Larisa H; J Damschroder, Laura; Cooper-DeHoff, Rhonda M; Denny, Joshua C; Ginsburg, Geoffrey S; Guan, Yue; Horowitz, Carol R; Levy, Kenneth D; Levy, Mia A; Madden, Ebony B; Matheny, Michael E; Pollin, Toni I; Pratt, Victoria M; Rosenman, Marc; Voils, Corrine I; W Weitzel, Kristen; Wilke, Russell A; Ryanne Wu, R; Orlando, Lori A

    2017-05-22

    data within existing EHRs and educate stakeholders about the value of genomic services are considered important for effective implementation. Future work could build on these findings to evaluate which strategies are optimal under what conditions. This information will be useful for guiding translation of discoveries to clinical care, which, in turn, can provide data to inform continual improvement of genomic innovations and their applications.

  5. Controlling the signal: Practical privacy protection of genomic data sharing through Beacon services.

    Science.gov (United States)

    Wan, Zhiyu; Vorobeychik, Yevgeniy; Kantarcioglu, Murat; Malin, Bradley

    2017-07-26

    Genomic data is increasingly collected by a wide array of organizations. As such, there is a growing demand to make summary information about such collections available more widely. However, over the past decade, a series of investigations have shown that attacks, rooted in statistical inference methods, can be applied to discern the presence of a known individual's DNA sequence in the pool of subjects. Recently, it was shown that the Beacon Project of the Global Alliance for Genomics and Health, a web service for querying about the presence (or absence) of a specific allele, was vulnerable. The Integrating Data for Analysis, Anonymization, and Sharing (iDASH) Center modeled a track in their third Privacy Protection Challenge on how to mitigate the Beacon vulnerability. We developed the winning solution for this track. This paper describes our computational method to optimize the tradeoff between the utility and the privacy of the Beacon service. We generalize the genomic data sharing problem beyond that which was introduced in the iDASH Challenge to be more representative of real world scenarios to allow for a more comprehensive evaluation. We then conduct a sensitivity analysis of our method with respect to several state-of-the-art methods using a dataset of 400,000 positions in Chromosome 10 for 500 individuals from Phase 3 of the 1000 Genomes Project. All methods are evaluated for utility, privacy and efficiency. Our method achieves better performance than all state-of-the-art methods, irrespective of how key factors (e.g., the allele frequency in the population, the size of the pool and utility weights) change from the original parameters of the problem. We further illustrate that it is possible for our method to exhibit subpar performance under special cases of allele query sequences. However, we show our method can be extended to address this issue when the query sequence is fixed and known a priori to the data custodian, so that they may plan stage their

  6. The Playlist Experience: Personal Playlists in Music Streaming Services

    OpenAIRE

    Hagen, Anja Nylund

    2015-01-01

    Music streaming services encompass features that enable the organization of music into playlists. This article inquires how users describe and make sense of practices and experiences of creating, curating, maintaining, and using personal playlists. The analysis relies on a mixed-method study, including music-diary self-reports, online observations, and in-depth interviews with 12 heavy users of Spotify or/and WiMP Music. The findings suggest heterogeneous management of static and dynamic play...

  7. [SOCIAL SERVICES ORGANIZATION FOR ELDERLY CITIZENS AND DISABLED PERSONS IN SOUTH FEDERAL DISTRICT OF RUSSIA].

    Science.gov (United States)

    Bashkireva, A S; Bogdanov, E A; Shestakov, V P; Svintsov, A A; Chernova, G I; Cherniakina, T S

    2015-01-01

    The article presents a comparative analysis of the effectiveness of the individual rehabilitation programs among elderly citizens and disabled persons of the Astrakhan region, the part of the South Federal District of Russia. We analyzed the data of the statistical survey of the social services provided rehabilitation facilities for the elderly and disabled people in the Astrakhan region. Analytical results thus obtained shown that the network of agencies and centers of social rehabilitation in the Astrakhan region did not correspond to the needs of elderly people and disabled persons. The negative dynamics in the number of social care centers as well as in the number of people who were provided with their services revealed the need for optimization of the institutional structure and its management. These specific characteristics of the social rehabilitation services in the Astrakhan region thus identified should be taken into consideration in order to improve the rehabilitation programs among elderly citizens and disabled persons in the South Region of the Russian Federation.

  8. The YH database: the first Asian diploid genome database

    DEFF Research Database (Denmark)

    Li, Guoqing; Ma, Lijia; Song, Chao

    2009-01-01

    genome consensus. The YH database is currently one of the three personal genome database, organizing the original data and analysis results in a user-friendly interface, which is an endeavor to achieve fundamental goals for establishing personal medicine. The database is available at http://yh.genomics.org.cn....

  9. Personal microbiome analysis improves student engagement and interest in Immunology, Molecular Biology, and Genomics undergraduate courses

    Science.gov (United States)

    Bridgewater, Laura C.; Jensen, Jamie L.; Breakwell, Donald P.; Nielsen, Brent L.; Johnson, Steven M.

    2018-01-01

    A critical area of emphasis for science educators is the identification of effective means of teaching and engaging undergraduate students. Personal microbiome analysis is a means of identifying the microbial communities found on or in our body. We hypothesized the use of personal microbiome analysis in the classroom could improve science education by making courses more applied and engaging for undergraduate students. We determined to test this prediction in three Brigham Young University undergraduate courses: Immunology, Advanced Molecular Biology Laboratory, and Genomics. These three courses have a two-week microbiome unit and students during the 2016 semester students could submit their own personal microbiome kit or use the demo data, whereas during the 2017 semester students were given access to microbiome data from an anonymous individual. The students were surveyed before, during, and after the human microbiome unit to determine whether analyzing their own personal microbiome data, compared to analyzing demo microbiome data, impacted student engagement and interest. We found that personal microbiome analysis significantly enhanced the engagement and interest of students while completing microbiome assignments, the self-reported time students spent researching the microbiome during the two week microbiome unit, and the attitudes of students regarding the course overall. Thus, we found that integrating personal microbiome analysis in the classroom was a powerful means of improving student engagement and interest in undergraduate science courses. PMID:29641525

  10. Long term care needs and personal care services under Medicaid: a survey of administrators.

    Science.gov (United States)

    Palley, H A; Oktay, J S

    1991-01-01

    Home and community based care services constitute a public initiative in the development of a long term care service network. One such home based initiative is the personal care service program of Medicaid. The authors conducted a national survey of administrators of this program. They received a response from 16 administrators of such programs in 1987-1988. The responses raise significant issues regarding training, access to and equity of services, quality of services, administrative oversight and the coordination of home-based care in a network of available services. Based on administrator responses, the authors draw several conclusions.

  11. Closing the gap between knowledge and clinical application: challenges for genomic translation.

    Science.gov (United States)

    Burke, Wylie; Korngiebel, Diane M

    2015-01-01

    Despite early predictions and rapid progress in research, the introduction of personal genomics into clinical practice has been slow. Several factors contribute to this translational gap between knowledge and clinical application. The evidence available to support genetic test use is often limited, and implementation of new testing programs can be challenging. In addition, the heterogeneity of genomic risk information points to the need for strategies to select and deliver the information most appropriate for particular clinical needs. Accomplishing these tasks also requires recognition that some expectations for personal genomics are unrealistic, notably expectations concerning the clinical utility of genomic risk assessment for common complex diseases. Efforts are needed to improve the body of evidence addressing clinical outcomes for genomics, apply implementation science to personal genomics, and develop realistic goals for genomic risk assessment. In addition, translational research should emphasize the broader benefits of genomic knowledge, including applications of genomic research that provide clinical benefit outside the context of personal genomic risk.

  12. Personalized medicine beyond genomics: alternative futures in big data-proteomics, environtome and the social proteome.

    Science.gov (United States)

    Özdemir, Vural; Dove, Edward S; Gürsoy, Ulvi K; Şardaş, Semra; Yıldırım, Arif; Yılmaz, Şenay Görücü; Ömer Barlas, I; Güngör, Kıvanç; Mete, Alper; Srivastava, Sanjeeva

    2017-01-01

    No field in science and medicine today remains untouched by Big Data, and psychiatry is no exception. Proteomics is a Big Data technology and a next generation biomarker, supporting novel system diagnostics and therapeutics in psychiatry. Proteomics technology is, in fact, much older than genomics and dates to the 1970s, well before the launch of the international Human Genome Project. While the genome has long been framed as the master or "elite" executive molecule in cell biology, the proteome by contrast is humble. Yet the proteome is critical for life-it ensures the daily functioning of cells and whole organisms. In short, proteins are the blue-collar workers of biology, the down-to-earth molecules that we cannot live without. Since 2010, proteomics has found renewed meaning and international attention with the launch of the Human Proteome Project and the growing interest in Big Data technologies such as proteomics. This article presents an interdisciplinary technology foresight analysis and conceptualizes the terms "environtome" and "social proteome". We define "environtome" as the entire complement of elements external to the human host, from microbiome, ambient temperature and weather conditions to government innovation policies, stock market dynamics, human values, political power and social norms that collectively shape the human host spatially and temporally. The "social proteome" is the subset of the environtome that influences the transition of proteomics technology to innovative applications in society. The social proteome encompasses, for example, new reimbursement schemes and business innovation models for proteomics diagnostics that depart from the "once-a-life-time" genotypic tests and the anticipated hype attendant to context and time sensitive proteomics tests. Building on the "nesting principle" for governance of complex systems as discussed by Elinor Ostrom, we propose here a 3-tiered organizational architecture for Big Data science such as

  13. 26 CFR 1.280H-1T - Limitation on certain amounts paid to employee-owners by personal service corporations electing...

    Science.gov (United States)

    2010-04-01

    ... period of the applicable election year under its normal method of accounting. However, a personal service... 1.280H-1T Internal Revenue INTERNAL REVENUE SERVICE, DEPARTMENT OF THE TREASURY (CONTINUED) INCOME...) Introduction. This section applies to any taxable year that a personal service corporation has a section 444...

  14. Arranging for personal assistance services and assistive technology at work. A report of the rehabilitation research and training center on personal assistance services.

    Science.gov (United States)

    Stoddard, Susan; Kraus, Lewis

    2006-01-01

    For an employee with a disability, reasonable accommodation can make the difference in finding work, maintaining employment, and succeeding on the job. Today, employers and employees alike are more aware that appropriate accommodation, including workplace personal assistance services (PAS) as well as assistive technology, improves an employee's ability to succeed. While assistive technology is in widespread use as an accommodation, workplace personal assistance is less understood. The goal of the study was to learn more about how workplace PAS and AT are arranged for in the workplace, and the issues that arise. Structured phone interviews were conducted with 20 workplace PAS users, 21 employers familiar with workplace PAS, and 19 employment organizations. Interview transcripts are the basis for the qualitative analysis of findings. Requirements for personal assistance accommodations focus on task-related needs. Personal care needs at work are not included in the Americans with Disabilities act but may be needed by the employee. Employers and PAS users have developed many creative ways to address PAS need. Organizations can construct an approach that fits the needs, abilities, and constraints of each organization. The interview respondents have identified a number of practices that are succeeding, including establishment of policies for arranging for PAS; centralization of accommodation budgets to remove work unit disincentives; and providing a shared personal assistant for interpreting or for task-related and personal care tasks. A number of important research questions remain. What is the extent of the need for PAS in the workplace? Will an expanded PAS supply increase the employment opportunities for people with disabilities? Will better models of workplace PAS be adopted by employers?

  15. Mobile Messaging Services-Based Personal Electrocardiogram Monitoring System

    Directory of Open Access Journals (Sweden)

    Ashraf A. Tahat

    2009-01-01

    Full Text Available A mobile monitoring system utilizing Bluetooth and mobile messaging services (MMS/SMSs with low-cost hardware equipment is proposed. A proof of concept prototype has been developed and implemented to enable transmission of an Electrocardiogram (ECG signal and body temperature of a patient, which can be expanded to include other vital signs. Communication between a mobile smart-phone and the ECG and temperature acquisition apparatus is implemented using the popular personal area network standard specification Bluetooth. When utilizing MMS for transmission, the mobile phone plots the received ECG signal and displays the temperature using special application software running on the client mobile phone itself, where the plot can be captured and saved as an image before transmission. Alternatively, SMS can be selected as a transmission means, where in this scenario, dedicated application software is required at the receiving device. The experimental setup can be operated for monitoring from anywhere in the globe covered by a cellular network that offers data services.

  16. Mobile messaging services-based personal electrocardiogram monitoring system.

    Science.gov (United States)

    Tahat, Ashraf A

    2009-01-01

    A mobile monitoring system utilizing Bluetooth and mobile messaging services (MMS/SMSs) with low-cost hardware equipment is proposed. A proof of concept prototype has been developed and implemented to enable transmission of an Electrocardiogram (ECG) signal and body temperature of a patient, which can be expanded to include other vital signs. Communication between a mobile smart-phone and the ECG and temperature acquisition apparatus is implemented using the popular personal area network standard specification Bluetooth. When utilizing MMS for transmission, the mobile phone plots the received ECG signal and displays the temperature using special application software running on the client mobile phone itself, where the plot can be captured and saved as an image before transmission. Alternatively, SMS can be selected as a transmission means, where in this scenario, dedicated application software is required at the receiving device. The experimental setup can be operated for monitoring from anywhere in the globe covered by a cellular network that offers data services.

  17. VISION-AIDED CONTEXT-AWARE FRAMEWORK FOR PERSONAL NAVIGATION SERVICES

    Directory of Open Access Journals (Sweden)

    S. Saeedi

    2012-07-01

    Full Text Available The ubiquity of mobile devices (such as smartphones and tablet-PCs has encouraged the use of location-based services (LBS that are relevant to the current location and context of a mobile user. The main challenge of LBS is to find a pervasive and accurate personal navigation system (PNS in different situations of a mobile user. In this paper, we propose a method of personal navigation for pedestrians that allows a user to freely move in outdoor environments. This system aims at detection of the context information which is useful for improving personal navigation. The context information for a PNS consists of user activity modes (e.g. walking, stationary, driving, and etc. and the mobile device orientation and placement with respect to the user. After detecting the context information, a low-cost integrated positioning algorithm has been employed to estimate pedestrian navigation parameters. The method is based on the integration of the relative user’s motion (changes of velocity and heading angle estimation based on the video image matching and absolute position information provided by GPS. A Kalman filter (KF has been used to improve the navigation solution when the user is walking and the phone is in his/her hand. The Experimental results demonstrate the capabilities of this method for outdoor personal navigation systems.

  18. Truebounded, Overbounded, or Underbounded? Scientists’ Personal Publication Lists versus Lists Generated through Bibliographic Information Services

    Directory of Open Access Journals (Sweden)

    Isabelle Dorsch

    2018-02-01

    Full Text Available A truebounded publication list of a scientific author consists of exactly all publications that meet two criteria: (1 they are formally published (e.g., journal article or proceeding paper; (2 they have scientific, scholarly, or academic content. A publication list is overbounded if it includes documents which do not meet the two criteria (such as novels; a publication list is underbounded if it is incomplete. Are authors’ personal publication lists, found on their personal sites on the Internet or in institutional repositories, truebounded, overbounded, or underbounded? And are the respective publication lists generated through bibliographic information services truebounded, overbounded, or underbounded? As case studies, publications of nine International Society of Scientometrics and Informetrics (ISSI Committee members (published between 2007 and 2016 were collected to create preferably complete personal publication lists according to the two criteria. We connect the “relative visibility of an author” with the concepts of truebounded, overbounded, and underbounded publication lists. The authors’ relative visibility values were determined for the information services Web of Science (WoS, Scopus, and Google Scholar and compared to the relative visibility of the authors’ personal publication lists. All results of the bibliographic information services are underbounded. Relative visibility is highest in Google Scholar, followed by Scopus and WoS.

  19. New Media Institute – Personal Public Service Announcement Project

    Centers for Disease Control (CDC) Podcasts

    2009-05-15

    In this podcast, Erin Edgerton, CDC, and Scott Shamp, New Media Institute, University of Georgia, discuss new media and the personal public service announcement project.  Created: 5/15/2009 by National Center for Health Marketing (NCHM), Division of eHealth Marketing (DeHM).   Date Released: 2/10/2010.

  20. An Analysis of Personal Technology Use by Service Members and Military Behavioral Health Providers.

    Science.gov (United States)

    Edwards-Stewart, Amanda; Smolenski, Derek J; Reger, Greg M; Bush, Nigel; Workman, Don E

    2016-07-01

    Personal technology use is ubiquitous in the United States today and technology, in general, continues to change the face of health care. However, little is known about the personal technology use of military service members and the behavioral health care providers that treat them. This study reports the technology use of 1,101 active duty service members and 45 behavioral health care providers at a large military installation. Participants reported Internet usage; ownership of smartphones, tablets, and e-readers; usage of mobile applications (apps); and basic demographic information. Compared with providers, service members reported higher rates of smartphone ownership, were more likely to own Android smartphones than iPhones, and spent more time gaming. Both groups spent a comparable amount of time using social media. With the exception of gaming, however, differences between service members and providers were not statistically significant when demographics were matched and controlled. Among service members, younger respondents (18-34) were statistically more likely than older respondents (35-58) to own smartphones, spend time gaming, and engage in social media. Our findings can help inform provider's technology-based education and intervention of their patients and guide the development of new technologies to support the psychological health of service members. Reprint & Copyright © 2016 Association of Military Surgeons of the U.S.

  1. Barriers to care and service needs among chronically homeless persons in a housing first program.

    Science.gov (United States)

    Parker, R David; Albrecht, Helmut A

    2012-01-01

    In 2010, more than 600,000 people in the United States experienced homelessness. Efficient and cost-effective housing methods that reduce homelessness need to be implemented. Housing Ready programs are the standard method that often has set requirements including earned income and sobriety, among others. These programs enable a subset of the homeless to become housed. However, chronically homeless persons, who use the most resources, are often not successful at enrollment or maintaining enrollment. Housing First (H1) is a method focusing on chronically homeless persons. Housing First places a client in housing and provides services after stabilization. This article assessed differences between chronically homeless persons in a H1 program and chronically homeless persons who are not in H1. A case-control study imbedded within a homeless service program collected sociodemographic and service variables, including access and barriers to care. Although the sample was 100% native English speaking, 22% of homeless persons reported that their providers do not speak their same language. All (100%) of participants had a disabling condition under HUD guidelines, but only 17.78% of homeless controls reported having a disabling condition. There were no differences on housing status based on income, gender, race, or age. The lack of differences between these groups indicates that a H1 program can be a clear derivation from the more common Housing Ready programs that have specific requirements for participation. Provider communication may negatively impact an individual's ability to transition from homelessness. Furthermore, chronically homeless persons not in intensive case management are less likely to understand the eligibility requirements for housing and, therefore, self-disqualify because of this lack of knowledge. Intentional communication and education for chronically homeless persons are 2 examples where case managers could improve the ability of the chronically homeless

  2. Health Orientation, Knowledge, and Attitudes toward Genetic Testing and Personalized Genomic Services: Preliminary Data from an Italian Sample

    Directory of Open Access Journals (Sweden)

    Serena Oliveri

    2016-01-01

    Full Text Available Objective. The study aims at assessing personality tendencies and orientations that could be closely correlated with knowledge, awareness, and interest toward undergoing genetic testing. Methods. A sample of 145 subjects in Italy completed an online survey, investigating demographic data, health orientation, level of perceived knowledge about genetic risk, genetic screening, and personal attitudes toward direct to consumer genetic testing (DTCGT. Results. Results showed that respondents considered genetic assessment to be helpful for disease prevention, but they were concerned that results could affect their life planning with little clinical utility. Furthermore, a very high percentage of respondents (67% had never heard about genetic testing directly available to the public. Data showed that personality tendencies, such as personal health consciousness, health internal control, health esteem, and confidence, motivation to avoid unhealthiness and motivation for healthiness affected the uptake of genetic information and the interest in undergoing genetic testing. Conclusions. Public knowledge and attitudes toward genetic risk and genetic testing among European countries, along with individual personality and psychological tendencies that could affect these attitudes, remain unexplored. The present study constitutes one of the first attempts to investigate how such personality tendencies could motivation to undergo genetic testing and engagement in lifestyle changes.

  3. Persons with physical disabilities’ experiences of rehabilitation services at Community Health Centres in Cape Town.

    Directory of Open Access Journals (Sweden)

    C.K. Kahonde

    2010-02-01

    Full Text Available Background: Rehabilitation is of fundamental importance for the persons with disability to achieve functional independence and have an improved quality of life. To enhance the effectiveness of rehabilitation, it  is  important  to  seek  clients’  perspectives  of  the  rehabilitation  services and  to  incorporate  these  perspectives  into  the  planning  and  delivery  of rehabilitation  services.  The  aim  of  this  study  was  to  explore  the  persons with  physical  disabilities’  experiences  of  the  rehabilitation  services  they received at Community Health Centres (CHCs. Methods: In-depth  qualitative  interviews  were  used  to  collect  data.  Ten  persons  with  physical  disabilities,  who  had  received  rehabilitation  services at CHCs participated in the in-depth interviews. The interviews were tape-recorded and transcribed verbatim.  Thematic analysis was used to analyse the data.  Results: The  clients  experienced  problems  with  accessing  transport  and  obtaining  information  from  the  service providers. Experiences regarding clients’ involvement in the rehabilitation were varied. All the clients reported positive experiences regarding their interaction with service providers and family involvement. Conclusion: The experiences of the participants who accessed CHCs for rehabilitation were positive and negative. The service providers should therefore address the aspects of rehabilitation that were negatively experienced.

  4. Relationships between personality, emotional labor, work engagement and job satisfaction in service professions.

    Science.gov (United States)

    Mróz, Justyna; Kaleta, Kinga

    2016-01-01

    Although there have been studies linking personality to selected aspects of functioning at work, Polish literature reports a shortage of detailed analyses considering, e.g., specific professional groups or certain variables. The aim of our study was to explore the links between personality traits and emotional labor, work engagement and job satisfaction among service workers. The study was based on a cross-sectional, self-report survey of 137 workers representing different service industries in Poland. Each participant received a demographic data sheet and a set of questionnaires: NEO Five-Factor Inventory, the Deep Acting and Surface Acting Scale, the Job Satisfaction Scale and the Utrecht Work Engagement Scale - all in their Polish versions. A correlation analysis revealed numerous relationships between the examined variables. However, results of the regression analysis showed that only some personality traits were related with individual aspects of functioning at work. Neuroticism accounted for the phenomenon of faking emotions. Conscientiousness was significantly related to general work engagement, vigor and dedication. Agreeableness and neuroticism significantly predicted job satisfaction. Individual personality traits account for various aspects of work functioning. Int J Occup Med Environ Health 2016;29(5):767-782. This work is available in Open Access model and licensed under a CC BY-NC 3.0 PL license.

  5. Relationships between personality, emotional labor, work engagement and job satisfaction in service professions

    Directory of Open Access Journals (Sweden)

    Justyna Mróz

    2016-10-01

    Full Text Available Objectives: Although there have been studies linking personality to selected aspects of functioning at work, Polish literature reports a shortage of detailed analyses considering, e.g., specific professional groups or certain variables. The aim of our study was to explore the links between personality traits and emotional labor, work engagement and job satisfaction among service workers. Material and Methods: The study was based on a cross-sectional, self-report survey of 137 workers representing different service industries in Poland. Each participant received a demographic data sheet and a set of questionnaires: NEO Five-Factor Inventory, the Deep Acting and Surface Acting Scale, the Job Satisfaction Scale and the Utrecht Work Engagement Scale – all in their Polish versions. Results: A correlation analysis revealed numerous relationships between the examined variables. However, results of the regression analysis showed that only some personality traits were related with individual aspects of functioning at work. Neuroticism accounted for the phenomenon of faking emotions. Conscientiousness was significantly related to general work engagement, vigor and dedication. Agreeableness and neuroticism significantly predicted job satisfaction. Conclusions: Individual personality traits account for various aspects of work functioning. Int J Occup Med Environ Health 2016;29(5:767–782

  6. Balancing Social Responsibility and Personal Autonomy: Adolescents' Reasoning About Community Service Programs.

    Science.gov (United States)

    McNeil, Justin; Helwig, Charles C

    2015-01-01

    Many jurisdictions in North America have implemented mandatory community service programs in high schools. However, little research exists examining the reasoning of youth themselves about such programs. This study examined how youth reason about community service programs, and how they balance the prosocial goals of these programs against their personal autonomy. Seventy-two participants between 10 and 18 years old evaluated voluntary community service along with 4 hypothetical mandatory programs that varied according to whether students or the government decided the areas in which students would serve, and whether a structured reflection component was included. The findings reveal that youth are not simply self-focused but rather balance and coordinate considerations of autonomy and community in their judgments and reasoning about community service.

  7. Bluejay 1.0: genome browsing and comparison with rich customization provision and dynamic resource linking

    Directory of Open Access Journals (Sweden)

    Turinsky Andrei L

    2008-10-01

    Full Text Available Abstract Background The Bluejay genome browser has been developed over several years to address the challenges posed by the ever increasing number of data types as well as the increasing volume of data in genome research. Beginning with a browser capable of rendering views of XML-based genomic information and providing scalable vector graphics output, we have now completed version 1.0 of the system with many additional features. Our development efforts were guided by our observation that biologists who use both gene expression profiling and comparative genomics gain functional insights above and beyond those provided by traditional per-gene analyses. Results Bluejay 1.0 is a genome viewer integrating genome annotation with: (i gene expression information; and (ii comparative analysis with an unlimited number of other genomes in the same view. This allows the biologist to see a gene not just in the context of its genome, but also its regulation and its evolution. Bluejay now has rich provision for personalization by users: (i numerous display customization features; (ii the availability of waypoints for marking multiple points of interest on a genome and subsequently utilizing them; and (iii the ability to take user relevance feedback of annotated genes or textual items to offer personalized recommendations. Bluejay 1.0 also embeds the Seahawk browser for the Moby protocol, enabling users to seamlessly invoke hundreds of Web Services on genomic data of interest without any hard-coding. Conclusion Bluejay offers a unique set of customizable genome-browsing features, with the goal of allowing biologists to quickly focus on, analyze, compare, and retrieve related information on the parts of the genomic data they are most interested in. We expect these capabilities of Bluejay to benefit the many biologists who want to answer complex questions using the information available from completely sequenced genomes.

  8. Relationships between personality, emotional labor, work engagement and job satisfaction in service professions

    OpenAIRE

    Justyna Mróz; Kinga Kaleta

    2016-01-01

    Objectives: Although there have been studies linking personality to selected aspects of functioning at work, Polish literature reports a shortage of detailed analyses considering, e.g., specific professional groups or certain variables. The aim of our study was to explore the links between personality traits and emotional labor, work engagement and job satisfaction among service workers. Material and Methods: The study was based on a cross-sectional, self-report survey of 137 workers represen...

  9. Person-centered care planning and service engagement: a study protocol for a randomized controlled trial.

    Science.gov (United States)

    Stanhope, Victoria; Tondora, Janis; Davidson, Larry; Choy-Brown, Mimi; Marcus, Steven C

    2015-04-22

    Service disengagement is a pervasive challenge the mental health care system faces. Mental health services are of little value should persons with mental illnesses continue to opt out of receiving them. Consumers attribute disengagement from care to an absence of choice in their treatment. In response, the mental health system is adopting a person-centered model, based upon recovery principles, to engage consumers more actively in their care. Person-centered care planning is a promising practice involving collaboration to develop and implement an actionable plan to assist the person in achieving personal recovery goals. This study design combines a parallel-group randomized controlled trial of community mental health organizations with qualitative methods to assess the effectiveness of person-centered care planning. Participants at 14 sites in Delaware and Connecticut will be randomized to treatment as usual or the person-centered care planning intervention. Participants will be in leadership (n = 70) or supervisory or direct care (n = 210) roles. The person-centered care planning intervention involves intensive staff training and 12 months of ongoing technical assistance. Quantitative survey data will be collected at baseline, 6 months and 12 months measuring person-centered care planning competency and organizational factors. Consumer outcomes (engagement, medication adherence, functioning and consumer satisfaction) will be assessed by Medicaid and state-level data. Qualitative data focused on process factors will include staff and consumer interviews and focus groups. In this intent-to-treat analysis, we will use mixed-effects multivariate regression models to evaluate the differential impact of the person-centered care planning intervention on each consumer and implementation outcome as well as the extent to which clinician assessments of organizational factors are associated with the implementation outcome. Mixed methods will triangulate and strengthen the

  10. REHABILITATION SERVICES FOR PERSONS AFFECTED BY STROKE IN JORDAN

    Directory of Open Access Journals (Sweden)

    Ann Moore

    2011-05-01

    Full Text Available The purpose of this study was to explore the perceptions stroke survivors have of the rehabilitation services received by them in the Jordanian community. A secondary aim was to explore the impact of culture on providing appropriate services for stroke survivors.Eighteen stroke survivors were recruited from an outpatient stroke rehabilitation programme. All 18 participants had been discharged from hospital for between one and six months. Semi-structured interviews were performed, either in the physiotherapy outpatient clinic where the affected person was attending a clinic or in their homes. Transcription of interviews carried out in Arabic and thematic analysis was also carried out in that language by transcribers who were fluent in Arabic and English, using a back-translation method. Necessary measures were taken to ensure the accuracy, reliability and validity of the data collection and analysis. Following thematic analysis, themes arising out of the data included physiotherapy and occupational therapy support in the community, out-patient rehabilitation clinic services, community clinic services and support from families, friends and neighbours. Participants expressed satisfaction with their therapists, but there were large areas of unmet rehabilitation need for stroke survivors in the Jordanian community such as a limited availability of occupational therapy services, insufficient amount of therapy services and poor medical support.   This study presents a unique contribution to knowledge relating to the experiences of stroke survivors in a developing country, and also shows how care systems are very dependent on cultural contexts, cultural beliefs and practises.DOI 10.5463/DCID.v22i1.18

  11. A new generation of cancer genome diagnostics for routine clinical use: overcoming the roadblocks to personalized cancer medicine.

    Science.gov (United States)

    Heuckmann, J M; Thomas, R K

    2015-09-01

    The identification of 'druggable' kinase gene alterations has revolutionized cancer treatment in the last decade by providing new and successfully targetable drug targets. Thus, genotyping tumors for matching the right patients with the right drugs have become a clinical routine. Today, advances in sequencing technology and computational genome analyses enable the discovery of a constantly growing number of genome alterations relevant for clinical decision making. As a consequence, several technological approaches have emerged in order to deal with these rapidly increasing demands for clinical cancer genome analyses. Here, we describe challenges on the path to the broad introduction of diagnostic cancer genome analyses and the technologies that can be applied to overcome them. We define three generations of molecular diagnostics that are in clinical use. The latest generation of these approaches involves deep and thus, highly sensitive sequencing of all therapeutically relevant types of genome alterations-mutations, copy number alterations and rearrangements/fusions-in a single assay. Such approaches therefore have substantial advantages (less time and less tissue required) over PCR-based methods that typically have to be combined with fluorescence in situ hybridization for detection of gene amplifications and fusions. Since these new technologies work reliably on routine diagnostic formalin-fixed, paraffin-embedded specimens, they can help expedite the broad introduction of personalized cancer therapy into the clinic by providing comprehensive, sensitive and accurate cancer genome diagnoses in 'real-time'. © The Author 2015. Published by Oxford University Press on behalf of the European Society for Medical Oncology. All rights reserved. For permissions, please email: journals.permissions@oup.com.

  12. Population genetic inference from personal genome data: impact of ancestry and admixture on human genomic variation.

    Science.gov (United States)

    Kidd, Jeffrey M; Gravel, Simon; Byrnes, Jake; Moreno-Estrada, Andres; Musharoff, Shaila; Bryc, Katarzyna; Degenhardt, Jeremiah D; Brisbin, Abra; Sheth, Vrunda; Chen, Rong; McLaughlin, Stephen F; Peckham, Heather E; Omberg, Larsson; Bormann Chung, Christina A; Stanley, Sarah; Pearlstein, Kevin; Levandowsky, Elizabeth; Acevedo-Acevedo, Suehelay; Auton, Adam; Keinan, Alon; Acuña-Alonzo, Victor; Barquera-Lozano, Rodrigo; Canizales-Quinteros, Samuel; Eng, Celeste; Burchard, Esteban G; Russell, Archie; Reynolds, Andy; Clark, Andrew G; Reese, Martin G; Lincoln, Stephen E; Butte, Atul J; De La Vega, Francisco M; Bustamante, Carlos D

    2012-10-05

    Full sequencing of individual human genomes has greatly expanded our understanding of human genetic variation and population history. Here, we present a systematic analysis of 50 human genomes from 11 diverse global populations sequenced at high coverage. Our sample includes 12 individuals who have admixed ancestry and who have varying degrees of recent (within the last 500 years) African, Native American, and European ancestry. We found over 21 million single-nucleotide variants that contribute to a 1.75-fold range in nucleotide heterozygosity across diverse human genomes. This heterozygosity ranged from a high of one heterozygous site per kilobase in west African genomes to a low of 0.57 heterozygous sites per kilobase in segments inferred to have diploid Native American ancestry from the genomes of Mexican and Puerto Rican individuals. We show evidence of all three continental ancestries in the genomes of Mexican, Puerto Rican, and African American populations, and the genome-wide statistics are highly consistent across individuals from a population once ancestry proportions have been accounted for. Using a generalized linear model, we identified subtle variations across populations in the proportion of neutral versus deleterious variation and found that genome-wide statistics vary in admixed populations even once ancestry proportions have been factored in. We further infer that multiple periods of gene flow shaped the diversity of admixed populations in the Americas-70% of the European ancestry in today's African Americans dates back to European gene flow happening only 7-8 generations ago. Copyright © 2012 The American Society of Human Genetics. Published by Elsevier Inc. All rights reserved.

  13. Decision Support for Personalized Cloud Service Selection through Multi-Attribute Trustworthiness Evaluation

    Science.gov (United States)

    Ding, Shuai; Xia, Chen-Yi; Zhou, Kai-Le; Yang, Shan-Lin; Shang, Jennifer S.

    2014-01-01

    Facing a customer market with rising demands for cloud service dependability and security, trustworthiness evaluation techniques are becoming essential to cloud service selection. But these methods are out of the reach to most customers as they require considerable expertise. Additionally, since the cloud service evaluation is often a costly and time-consuming process, it is not practical to measure trustworthy attributes of all candidates for each customer. Many existing models cannot easily deal with cloud services which have very few historical records. In this paper, we propose a novel service selection approach in which the missing value prediction and the multi-attribute trustworthiness evaluation are commonly taken into account. By simply collecting limited historical records, the current approach is able to support the personalized trustworthy service selection. The experimental results also show that our approach performs much better than other competing ones with respect to the customer preference and expectation in trustworthiness assessment. PMID:24972237

  14. To tell the right story : Functions of the personal user narrative in service user involvement

    Directory of Open Access Journals (Sweden)

    Erik Eriksson

    2015-03-01

    Full Text Available From the starting point of narrative ethnography, this article explores a specific kind of service user involvement in psychiatry: staff training activities in which patients and former patients are invited to “tell their stories”. A core feature of these stories is that they are based on the narrators’ self-perceived experience, and they all have a highly personal character. I call these stories service user narratives, and these are the topic of study in this article. The narratives’ disposition, content and functions are explored, as is the role played by the personal aspects of the stories. This article investigates two functions of the service user narrative: the narrative as a means (1 of creating alternative images of mental ill health, and (2 of enabling a critique of psychiatry.

  15. 31 CFR 539.306 - Goods, technology, or services produced or provided by a designated foreign person.

    Science.gov (United States)

    2010-07-01

    ... 31 Money and Finance: Treasury 3 2010-07-01 2010-07-01 false Goods, technology, or services..., technology, or services produced or provided by a designated foreign person. With respect to the prohibitions in §§ 539.201 and 539.202, the term goods, technology, or services produced or provided by a...

  16. Next-Generation Genomics Facility at C-CAMP: Accelerating Genomic Research in India

    Science.gov (United States)

    S, Chandana; Russiachand, Heikham; H, Pradeep; S, Shilpa; M, Ashwini; S, Sahana; B, Jayanth; Atla, Goutham; Jain, Smita; Arunkumar, Nandini; Gowda, Malali

    2014-01-01

    Next-Generation Sequencing (NGS; http://www.genome.gov/12513162) is a recent life-sciences technological revolution that allows scientists to decode genomes or transcriptomes at a much faster rate with a lower cost. Genomic-based studies are in a relatively slow pace in India due to the non-availability of genomics experts, trained personnel and dedicated service providers. Using NGS there is a lot of potential to study India's national diversity (of all kinds). We at the Centre for Cellular and Molecular Platforms (C-CAMP) have launched the Next Generation Genomics Facility (NGGF) to provide genomics service to scientists, to train researchers and also work on national and international genomic projects. We have HiSeq1000 from Illumina and GS-FLX Plus from Roche454. The long reads from GS FLX Plus, and high sequence depth from HiSeq1000, are the best and ideal hybrid approaches for de novo and re-sequencing of genomes and transcriptomes. At our facility, we have sequenced around 70 different organisms comprising of more than 388 genomes and 615 transcriptomes – prokaryotes and eukaryotes (fungi, plants and animals). In addition we have optimized other unique applications such as small RNA (miRNA, siRNA etc), long Mate-pair sequencing (2 to 20 Kb), Coding sequences (Exome), Methylome (ChIP-Seq), Restriction Mapping (RAD-Seq), Human Leukocyte Antigen (HLA) typing, mixed genomes (metagenomes) and target amplicons, etc. Translating DNA sequence data from NGS sequencer into meaningful information is an important exercise. Under NGGF, we have bioinformatics experts and high-end computing resources to dissect NGS data such as genome assembly and annotation, gene expression, target enrichment, variant calling (SSR or SNP), comparative analysis etc. Our services (sequencing and bioinformatics) have been utilized by more than 45 organizations (academia and industry) both within India and outside, resulting several publications in peer-reviewed journals and several genomic

  17. Penerapan Personal Hygiene Pada Karyawan Food and Beverage Service Hotel Aryaduta Pekanbaru

    OpenAIRE

    Kurniawan, Adi; Sidiq, Siti Sofro

    2016-01-01

    In the world of hospitality especially in food and beverage service every single thing must be considered to give the best food to guest of hotel. Actually not only about food but the first thing seen by guest of hotel before they enjoy their food is about employee. Employee of food and beverage service must be clean in every single thing in their body.Because of that really need knowledge about important thing implementation personal hygiene for the employee. Not only in working area but als...

  18. 38 CFR 13.55 - Veterans Service Center Manager to select and appoint or recommend for appointment the person or...

    Science.gov (United States)

    2010-07-01

    ... Manager to select and appoint or recommend for appointment the person or legal entity to receive....55 Veterans Service Center Manager to select and appoint or recommend for appointment the person or.... The Veterans Service Center Manager is authorized to select and appoint (or in the case of a court...

  19. MALINA: a web service for visual analytics of human gut microbiota whole-genome metagenomic reads.

    Science.gov (United States)

    Tyakht, Alexander V; Popenko, Anna S; Belenikin, Maxim S; Altukhov, Ilya A; Pavlenko, Alexander V; Kostryukova, Elena S; Selezneva, Oksana V; Larin, Andrei K; Karpova, Irina Y; Alexeev, Dmitry G

    2012-12-07

    MALINA is a web service for bioinformatic analysis of whole-genome metagenomic data obtained from human gut microbiota sequencing. As input data, it accepts metagenomic reads of various sequencing technologies, including long reads (such as Sanger and 454 sequencing) and next-generation (including SOLiD and Illumina). It is the first metagenomic web service that is capable of processing SOLiD color-space reads, to authors' knowledge. The web service allows phylogenetic and functional profiling of metagenomic samples using coverage depth resulting from the alignment of the reads to the catalogue of reference sequences which are built into the pipeline and contain prevalent microbial genomes and genes of human gut microbiota. The obtained metagenomic composition vectors are processed by the statistical analysis and visualization module containing methods for clustering, dimension reduction and group comparison. Additionally, the MALINA database includes vectors of bacterial and functional composition for human gut microbiota samples from a large number of existing studies allowing their comparative analysis together with user samples, namely datasets from Russian Metagenome project, MetaHIT and Human Microbiome Project (downloaded from http://hmpdacc.org). MALINA is made freely available on the web at http://malina.metagenome.ru. The website is implemented in JavaScript (using Ext JS), Microsoft .NET Framework, MS SQL, Python, with all major browsers supported.

  20. 76 FR 26678 - Withholding on Payments by Government Entities to Persons Providing Property or Services

    Science.gov (United States)

    2011-05-09

    ... INCOME TAX AT SOURCE Paragraph 1. The authority citation for part 31 continues to read in part as follows... withhold income tax when making payments to persons providing property or services. These proposed... property or services. The proposed regulations reflect changes in the law made by the Tax Increase...

  1. Genomics With Cloud Computing

    OpenAIRE

    Sukhamrit Kaur; Sandeep Kaur

    2015-01-01

    Abstract Genomics is study of genome which provides large amount of data for which large storage and computation power is needed. These issues are solved by cloud computing that provides various cloud platforms for genomics. These platforms provides many services to user like easy access to data easy sharing and transfer providing storage in hundreds of terabytes more computational power. Some cloud platforms are Google genomics DNAnexus and Globus genomics. Various features of cloud computin...

  2. Personalized Popular Blog Recommender Service for Mobile Applications

    Science.gov (United States)

    Tsai, Pei-Yun; Liu, Duen-Ren

    Weblogs have emerged as a new communication and publication medium on the Internet for diffusing the latest useful information. Providing value-added mobile services such as blog articles is increasingly important to attract mobile users to mobile commerce. There are, however, a tremendous number of blog articles, and mobile users generally have difficulty in browsing weblogs. Accordingly, providing mobile users with blog articles that suit their interests is an important issue. Very little research, however, focuses on this issue. In this work, we propose a Customized Content Service on a mobile device (m-CCS) to filter and push blog articles to mobile users. The m-CCS can predict the latest popular blog topics by forecasting the trend of time-sensitive popularity of weblogs. Furthermore, to meet the diversified interest of mobile users, m-CCS further analyzes users’ browsing logs to derive their interests, which are then used to recommend their preferred popular blog topics and articles. The prototype system of m-CCS demonstrates that the system can effectively recommend mobile users desirable blog articles with respect to both popularity and personal interests.

  3. Personality Self-Perceptions of Turkish Music Pre-Service Teachers in Relation to Departmental Satisfaction

    Science.gov (United States)

    Cevik, Beste

    2011-01-01

    The purpose of this study was to examine individual differences in the field of music education. The "Big Five" model of personality served as the framework to help meet the purpose. Using a sample of 83 music pre-service teachers enrolled in a department of music education, we found that music pre-service teachers scored high in the Openness,…

  4. An Investigation of Pre-Service Science and Mathematics Teachers' Personal Growth Initiative

    Science.gov (United States)

    Büyükgöze, Hilal

    2015-01-01

    The current paper primarily aims to investigate pre-service science and mathematics teachers' personal growth initiative levels. The second aim of the study is to examine whether participants' initiative levels differ in relation to their gender, grade, department, perceived academic achievement, and willingness to attend graduate education after…

  5. Successful preimplantation genetic diagnosis by targeted next-generation sequencing on an ion torrent personal genome machine platform.

    Science.gov (United States)

    Hao, Yan; Chen, Dawei; Zhang, Zhiguo; Zhou, Ping; Cao, Yunxia; Wei, Zhaolian; Xu, Xiaofeng; Chen, Beili; Zou, Weiwei; Lv, Mingrong; Ji, Dongmei; He, Xiaojin

    2018-04-01

    Hearing loss may place a heavy burden on the patient and patient's family. Given the high incidence of hearing loss among newborns and the huge cost of treatment and care (including cochlear implantation), prenatal diagnosis is strongly recommended. Termination of the fetus may be considered as an extreme outcome to the discovery of a potential deaf fetus, and therefore preimplantation genetic diagnosis has become an important option for avoiding the birth of affected children without facing the risk of abortion following prenatal diagnosis. In one case, a couple had a 7-year-old daughter affected by non-syndromic sensorineural hearing loss. The affected fetus carried a causative compound heterozygous mutation c.919-2 A>G (IVS7-2 A>G) and c.1707+5 G>A (IVS15+5 G>A) of the solute carrier family 26 member 4 gene inherited from maternal and paternal sides, respectively. The present study applied multiple displacement amplification for whole genome amplification of biopsied trophectoderm cells and next-generation sequencing (NGS)-based single nucleotide polymorphism haplotyping on an Ion Torrent Personal Genome Machine. One unaffected embryo was transferred in a frozen-thawed embryo transfer cycle and the patient was impregnated. To conclude, to the best of our knowledge, this may be the first report of NGS-based preimplantation genetic diagnosis (PGD) for non-syndromic hearing loss caused by a compound heterozygous mutation using an Ion Torrent Personal Genome Machine. NGS provides unprecedented high-throughput, highly parallel and base-pair resolution data for genetic analysis. The method meets the requirements of medium-sized diagnostics laboratories. With decreased costs compared with previous techniques (such as Sanger sequencing), this technique may have potential widespread clinical application in PGD of other types of monogenic disease.

  6. Analysis of the whole mitochondrial genome: translation of the Ion Torrent Personal Genome Machine system to the diagnostic bench?

    Science.gov (United States)

    Seneca, Sara; Vancampenhout, Kim; Van Coster, Rudy; Smet, Joél; Lissens, Willy; Vanlander, Arnaud; De Paepe, Boel; Jonckheere, An; Stouffs, Katrien; De Meirleir, Linda

    2015-01-01

    Next-generation sequencing (NGS), an innovative sequencing technology that enables the successful analysis of numerous gene sequences in a massive parallel sequencing approach, has revolutionized the field of molecular biology. Although NGS was introduced in a rather recent past, the technology has already demonstrated its potential and effectiveness in many research projects, and is now on the verge of being introduced into the diagnostic setting of routine laboratories to delineate the molecular basis of genetic disease in undiagnosed patient samples. We tested a benchtop device on retrospective genomic DNA (gDNA) samples of controls and patients with a clinical suspicion of a mitochondrial DNA disorder. This Ion Torrent Personal Genome Machine platform is a high-throughput sequencer with a fast turnaround time and reasonable running costs. We challenged the chemistry and technology with the analysis and processing of a mutational spectrum composed of samples with single-nucleotide substitutions, indels (insertions and deletions) and large single or multiple deletions, occasionally in heteroplasmy. The output data were compared with previously obtained conventional dideoxy sequencing results and the mitochondrial revised Cambridge Reference Sequence (rCRS). We were able to identify the majority of all nucleotide alterations, but three false-negative results were also encountered in the data set. At the same time, the poor performance of the PGM instrument in regions associated with homopolymeric stretches generated many false-positive miscalls demanding additional manual curation of the data.

  7. Pre-Service Teacher Opinions about Eco-Friendly Person Activity Package Developed to Raise Environmental Awareness

    Science.gov (United States)

    Candan, Sevcan; Erten, Sinan

    2015-01-01

    In this study, the effectiveness of Eco-Friendly Person Activity Package developed in order to raise environmental awareness in pre-service teachers and enable them to be an example of an eco-friendly teacher for their future students, and the responses about Eco-Friendly Person Activity Package were investigated. The study was conducted on 75…

  8. Rat Genome Database (RGD)

    Data.gov (United States)

    U.S. Department of Health & Human Services — The Rat Genome Database (RGD) is a collaborative effort between leading research institutions involved in rat genetic and genomic research to collect, consolidate,...

  9. Personal Services Contracts. Is It Time to Lift the Ban

    Science.gov (United States)

    2016-03-01

    example, if you bought a ticket to see Elvis Presley in Las Vegas in 1971, it would have been unac- ceptable for the venue to replace him with an...impersonator and expect you to be satisfied. Elvis provided a type of personal service that would have been problematic, essentially impos- sible, to...Constitution trumps the ob- ligations of the contractual parties. In the Elvis example, if the substitute’s performances did not fulfill the patrons’ expecta

  10. Family genome browser: visualizing genomes with pedigree information.

    Science.gov (United States)

    Juan, Liran; Liu, Yongzhuang; Wang, Yongtian; Teng, Mingxiang; Zang, Tianyi; Wang, Yadong

    2015-07-15

    Families with inherited diseases are widely used in Mendelian/complex disease studies. Owing to the advances in high-throughput sequencing technologies, family genome sequencing becomes more and more prevalent. Visualizing family genomes can greatly facilitate human genetics studies and personalized medicine. However, due to the complex genetic relationships and high similarities among genomes of consanguineous family members, family genomes are difficult to be visualized in traditional genome visualization framework. How to visualize the family genome variants and their functions with integrated pedigree information remains a critical challenge. We developed the Family Genome Browser (FGB) to provide comprehensive analysis and visualization for family genomes. The FGB can visualize family genomes in both individual level and variant level effectively, through integrating genome data with pedigree information. Family genome analysis, including determination of parental origin of the variants, detection of de novo mutations, identification of potential recombination events and identical-by-decent segments, etc., can be performed flexibly. Diverse annotations for the family genome variants, such as dbSNP memberships, linkage disequilibriums, genes, variant effects, potential phenotypes, etc., are illustrated as well. Moreover, the FGB can automatically search de novo mutations and compound heterozygous variants for a selected individual, and guide investigators to find high-risk genes with flexible navigation options. These features enable users to investigate and understand family genomes intuitively and systematically. The FGB is available at http://mlg.hit.edu.cn/FGB/. © The Author 2015. Published by Oxford University Press. All rights reserved. For Permissions, please e-mail: journals.permissions@oup.com.

  11. Are satisfaction with and self-management of personal assistance services associated with the life satisfaction of persons with physical disabilities?

    Science.gov (United States)

    Fleming-Castaldy, Rita P

    2011-01-01

    To examine the relationships between satisfaction with and self-management of personal assistance services (PAS) and the quality of life (QoL) of persons with disabilities. To test the postulate that consumer-directed PAS can fulfil the human need for control and contribute to a satisfactory life. A survey compared the perspectives of persons using consumer-directed PAS versus those using agency-directed. A Personal Data Form obtained demographics and PAS characteristics. The Quality of Life Inventory measured life satisfaction. A PAS questionnaire measured perceptions about the management of, desire for control of, and satisfaction with PAS. Data were analysed using SPSS®- 14. Significant relationships were found between QoL and satisfaction with PAS (p perceived control of PAS and satisfaction with PAS (p satisfaction with their PAS (p satisfaction, and QoL support the value of consumer-directed programmes. Rehabilitation professionals can use this knowledge to develop, implement and research practises that enable self-management.

  12. Human genomics projects and precision medicine.

    Science.gov (United States)

    Carrasco-Ramiro, F; Peiró-Pastor, R; Aguado, B

    2017-09-01

    The completion of the Human Genome Project (HGP) in 2001 opened the floodgates to a deeper understanding of medicine. There are dozens of HGP-like projects which involve from a few tens to several million genomes currently in progress, which vary from having specialized goals or a more general approach. However, data generation, storage, management and analysis in public and private cloud computing platforms have raised concerns about privacy and security. The knowledge gained from further research has changed the field of genomics and is now slowly permeating into clinical medicine. The new precision (personalized) medicine, where genome sequencing and data analysis are essential components, allows tailored diagnosis and treatment according to the information from the patient's own genome and specific environmental factors. P4 (predictive, preventive, personalized and participatory) medicine is introducing new concepts, challenges and opportunities. This review summarizes current sequencing technologies, concentrates on ongoing human genomics projects, and provides some examples in which precision medicine has already demonstrated clinical impact in diagnosis and/or treatment.

  13. Competing Goodness: Perceptions of Person-Centered Culture Change within Human Service Agencies

    Science.gov (United States)

    Starling, Stacey Lee

    2012-01-01

    Front and center in the endeavor to "reform" health care is the appeal to change the culture of aging within provider organizations situated in the long-term care continuum. Person-centeredness is the latest philosophical overlay to aging care and supports and services. As a dominate paradigm guiding change, the movement intends to shift…

  14. 17 CFR 1.63 - Service on self-regulatory organization governing boards or committees by persons with...

    Science.gov (United States)

    2010-04-01

    ... 17 Commodity and Securities Exchanges 1 2010-04-01 2010-04-01 false Service on self-regulatory... EXCHANGE ACT Miscellaneous § 1.63 Service on self-regulatory organization governing boards or committees by persons with disciplinary histories. (a) Definitions. For purposes of this section: (1) Self-regulatory...

  15. Personalizing a Service Robot by Learning Human Habits from Behavioral Footprints

    Directory of Open Access Journals (Sweden)

    Kun Li

    2015-03-01

    Full Text Available For a domestic personal robot, personalized services are as important as predesigned tasks, because the robot needs to adjust the home state based on the operator's habits. An operator's habits are composed of cues, behaviors, and rewards. This article introduces behavioral footprints to describe the operator's behaviors in a house, and applies the inverse reinforcement learning technique to extract the operator's habits, represented by a reward function. We implemented the proposed approach with a mobile robot on indoor temperature adjustment, and compared this approach with a baseline method that recorded all the cues and behaviors of the operator. The result shows that the proposed approach allows the robot to reveal the operator's habits accurately and adjust the environment state accordingly.

  16. The human genome as public: Justifications and implications.

    Science.gov (United States)

    Bayefsky, Michelle J

    2017-03-01

    Since the human genome was decoded, great emphasis has been placed on the unique, personal nature of the genome, along with the benefits that personalized medicine can bring to individuals and the importance of safeguarding genetic privacy. As a result, an equally important aspect of the human genome - its common nature - has been underappreciated and underrepresented in the ethics literature and policy dialogue surrounding genetics and genomics. This article will argue that, just as the personal nature of the genome has been used to reinforce individual rights and justify important privacy protections, so too the common nature of the genome can be employed to support protections of the genome at a population level and policies designed to promote the public's wellbeing. In order for public health officials to have the authority to develop genetics policies for the sake of the public good, the genome must have not only a common, but also a public, dimension. This article contends that DNA carries a public dimension through the use of two conceptual frameworks: the common heritage (CH) framework and the common resource (CR) framework. Both frameworks establish a public interest in the human genome, but the CH framework can be used to justify policies aimed at preserving and protecting the genome, while the CR framework can be employed to justify policies for utilizing the genome for the public benefit. A variety of possible policy implications are discussed, with special attention paid to the use of large-scale genomics databases for public health research. © Published 2016. This article is a U.S. Government work and is in the public domain in the USA.

  17. Improving health services to displaced persons in Aceh, Indonesia: a balanced scorecard.

    Science.gov (United States)

    Chan, Grace J; Parco, Kristin B; Sihombing, Melva E; Tredwell, Susan P; O'Rourke, Edward J

    2010-09-01

    After the Indian Ocean tsunami in December 2004, the International Organization for Migration constructed temporary health clinics to provide medical services to survivors living in temporary accommodation centres throughout Aceh, Indonesia. Limited resources, inadequate supervision, staff turnover and lack of a health information system made it challenging to provide quality primary health services. A balanced scorecard was developed and implemented in collaboration with local health clinic staff and district health officials. Performance targets were identified. Staff collected data from clinics and accommodation centres to develop 30 simple performance measures. These measures were monitored periodically and discussed at meetings with stakeholders to guide the development of health interventions. Two years after the tsunami, 34 000 displaced persons continued to receive services from temporary health clinics in two districts of Aceh province. From March to December 2007, the scorecard was implemented in seven temporary health clinics. Interventions stimulated and tracked by the scorecard showed measurable improvements in preventive medicine, child health, capacity building of clinic staff and availability of essential drugs. By enhancing communication, the scorecard also led to qualitative benefits. The balanced scorecard is a practical tool to focus attention and resources to facilitate improvement in disaster rehabilitation settings where health information infrastructure is poor. Introducing a mechanism for rapid improvement fostered communication between nongovernmental organizations, district health officials, clinic health workers and displaced persons.

  18. Genomic technologies in neonatology

    Directory of Open Access Journals (Sweden)

    L. N. Chernova

    2017-01-01

    Full Text Available In recent years, there has been a tremendous trend toward personalized medicine. Advances in the field forced clinicians, including neonatologists, to take a fresh look at prevention, tactics of management and therapy of various diseases. In the center of attention of foreign, and increasingly Russian, researchers and doctors, there are individual genomic data that allow not only to assess the risks of some form of pathology, but also to successfully apply personalized strategies of prediction, prevention and targeted treatment. This article provides a brief review of the latest achievements of genomic technologies in newborns, examines the problems and potential applications of genomics in promoting the concept of personalized medicine in neonatology. The increasing amount of personalized data simply impossible to analyze only by the human mind. In this connection, the need of computers and bioinformatics is obvious. The article reveals the role of translational bioinformatics in the analysis and integration of the results of the accumulated fundamental research into complete clinical decisions. The latest advances in neonatal translational bioinformatics such as clinical decision support systems are considered. It helps to monitor vital parameters of newborns influencing the course of a particular disease, to calculate the increased risks of the development of various pathologies and to select the drugs.

  19. The impact of organisational culture on the delivery of person-centred care in services providing respite care and short breaks for people with dementia.

    Science.gov (United States)

    Kirkley, Catherine; Bamford, Claire; Poole, Marie; Arksey, Hilary; Hughes, Julian; Bond, John

    2011-07-01

    Ensuring the development and delivery of person-centred care in services providing respite care and short breaks for people with dementia and their carers has a number of challenges for health and social service providers. This article explores the role of organisational culture in barriers and facilitators to person-centred dementia care. As part of a mixed-methods study of respite care and short breaks for people with dementia and their carers, 49 telephone semi-structured interviews, two focus groups (N= 16) and five face-to-face in-depth interviews involving front-line staff and operational and strategic managers were completed in 2006-2007. Qualitative thematic analysis of transcripts identified five themes on aspects of organisational culture that are perceived to influence person-centred care: understandings of person-centred care, attitudes to service development, service priorities, valuing staff and solution-focused approaches. Views of person-centred care expressed by participants, although generally positive, highlight a range of understandings about person-centred care. Some organisations describe their service as being person-centred without the necessary cultural shift to make this a reality. Participants highlighted resource constraints and the knowledge, attitudes and personal qualities of staff as a barrier to implementing person-centred care. Leadership style, the way that managers' support and value staff and the management of risk were considered important influences. Person-centred dementia care is strongly advocated by professional opinion leaders and is prescribed in policy documents. This analysis suggests that person-centred dementia care is not strongly embedded in the organisational cultures of all local providers of respite-care and short-break services. Provider organisations should be encouraged further to develop a shared culture at all levels of the organisation to ensure person-centred dementia care. © 2011 Blackwell Publishing

  20. Genome Maps, a new generation genome browser.

    Science.gov (United States)

    Medina, Ignacio; Salavert, Francisco; Sanchez, Rubén; de Maria, Alejandro; Alonso, Roberto; Escobar, Pablo; Bleda, Marta; Dopazo, Joaquín

    2013-07-01

    Genome browsers have gained importance as more genomes and related genomic information become available. However, the increase of information brought about by new generation sequencing technologies is, at the same time, causing a subtle but continuous decrease in the efficiency of conventional genome browsers. Here, we present Genome Maps, a genome browser that implements an innovative model of data transfer and management. The program uses highly efficient technologies from the new HTML5 standard, such as scalable vector graphics, that optimize workloads at both server and client sides and ensure future scalability. Thus, data management and representation are entirely carried out by the browser, without the need of any Java Applet, Flash or other plug-in technology installation. Relevant biological data on genes, transcripts, exons, regulatory features, single-nucleotide polymorphisms, karyotype and so forth, are imported from web services and are available as tracks. In addition, several DAS servers are already included in Genome Maps. As a novelty, this web-based genome browser allows the local upload of huge genomic data files (e.g. VCF or BAM) that can be dynamically visualized in real time at the client side, thus facilitating the management of medical data affected by privacy restrictions. Finally, Genome Maps can easily be integrated in any web application by including only a few lines of code. Genome Maps is an open source collaborative initiative available in the GitHub repository (https://github.com/compbio-bigdata-viz/genome-maps). Genome Maps is available at: http://www.genomemaps.org.

  1. A national study of breast and colorectal cancer patients' decision-making for novel personalized medicine genomic diagnostics.

    Science.gov (United States)

    Issa, Amalia M; Tufail, Waqas; Atehortua, Nelson; McKeever, John

    2013-05-01

    Molecular diagnostics are increasingly being used to help guide decision-making for personalized medical treatment of breast and colorectal cancer patients. The main aim of this study was to better understand and determine breast and colorectal cancer patients' decision-making strategies and the trade-offs they make in deciding about characteristics of molecular genomic diagnostics for breast and colorectal cancer. We surveyed a nationally representative sample of 300 breast and colorectal cancer patients using a previously developed web-administered instrument. Eligibility criteria included patients aged 18 years and older with either breast or colorectal cancer. We explored several attributes and attribute levels of molecular genomic diagnostics in 20 scenarios. Our analysis revealed that both breast and colorectal cancer patients weighted the capability of molecular genomic diagnostics to determine the probability of treatment efficacy as being of greater importance than information provided to detect adverse events. The probability of either false-positive or -negative results was ranked highly as a potential barrier by both breast and colorectal patients. However, 78.6% of breast cancer patients ranked the possibility of a 'false-negative test result leading to undertreatment' higher than the 'chance of a false positive, which may lead to overtreatment' (68%). This finding contrasted with the views of colorectal cancer patients who ranked the chance of a false positive as being of greater concern than a false negative (72.8 vs 63%). Overall, cancer patients exhibited a high willingness to accept and pay for genomic diagnostic tests, especially among breast cancer patients. Cancer patients seek a test accuracy rate of 90% or higher. Breast and colorectal cancer patients' decisions about genomic diagnostics are influenced more by the probability of being cured than by avoiding potential severe adverse events. This study provides insights into the relative weight

  2. The impact of personal connection on customer behaviours (word-of-mouth intention and retention) in service encounters

    OpenAIRE

    Chen, Ning; Zhao, Qi; Ardley, Barry

    2015-01-01

    In services marketing it is widely acknowledged that a relationship approach may facilitate in customer retention and enhance customer loyalty, and further influence customer post-purchase behaviours e.g. word-of-mouth. In this study, a specific relationship in service encounters, personal connections between customers and service employees, is explored in its indications on different outcomes from service encounters including three types of word-of-mouth behaviour intention and retention. Th...

  3. Personality as predictor of customer service centre agent performance in the banking industry: An exploratory study

    Directory of Open Access Journals (Sweden)

    Linda Blignaut

    2014-10-01

    Research purpose: The aim of the study was to identify personality traits, as measured by the Occupational Personality Questionnaire 32r (item response theory scored version, including the more parsimonious Big Five personality traits, that may act as job performance predictors for customer service centre (CSC agents in the banking industry. Motivation for the study: This study provides an exploratory investigation of whether specific personality traits differ amongst CSC agents in the banking industry, based on their job performance. No published research in this field could be identified. Research design, approach and method: Purposive sampling was used to collect data from the entire CSC agent base of a particular banking group (N = 89. Responses were analysed by means of quantitative techniques. Main findings and practical/managerial implications: Results indicate that parsimonious traits of personality, expressed as the Big Five personality traits, predict job performance. The importance of carefully selecting suitable job performance criteria for a specific environment, however, emerged as a critical issue in performance prediction. Contribution: The study focuses attention on the importance of CSC agents’ performance as frontline staff in the banking industry and identifying valid criteria for selecting the most suitable agents. Providing a one-contact point of service such as a CSC is a fairly new approach in the South African banking industry and this study provides an initial investigation of personality traits that may serve as job performance predictors in this environment.

  4. Analyzing Reflections in Service Learning to Promote Personal Growth and Community Self-Efficacy

    Science.gov (United States)

    Sanders, Martha J.; Van Oss, Tracy; McGeary, Signian

    2016-01-01

    The use of structured reflections for promoting personal understanding and community self-efficacy was examined in 65 occupational therapy college students in a service learning course. Students in the experimental group wrote structured reflections throughout the semester while students in the control groups used non-structured reflections.…

  5. BAMSI: a multi-cloud service for scalable distributed filtering of massive genome data.

    Science.gov (United States)

    Ausmees, Kristiina; John, Aji; Toor, Salman Z; Hellander, Andreas; Nettelblad, Carl

    2018-06-26

    The advent of next-generation sequencing (NGS) has made whole-genome sequencing of cohorts of individuals a reality. Primary datasets of raw or aligned reads of this sort can get very large. For scientific questions where curated called variants are not sufficient, the sheer size of the datasets makes analysis prohibitively expensive. In order to make re-analysis of such data feasible without the need to have access to a large-scale computing facility, we have developed a highly scalable, storage-agnostic framework, an associated API and an easy-to-use web user interface to execute custom filters on large genomic datasets. We present BAMSI, a Software as-a Service (SaaS) solution for filtering of the 1000 Genomes phase 3 set of aligned reads, with the possibility of extension and customization to other sets of files. Unique to our solution is the capability of simultaneously utilizing many different mirrors of the data to increase the speed of the analysis. In particular, if the data is available in private or public clouds - an increasingly common scenario for both academic and commercial cloud providers - our framework allows for seamless deployment of filtering workers close to data. We show results indicating that such a setup improves the horizontal scalability of the system, and present a possible use case of the framework by performing an analysis of structural variation in the 1000 Genomes data set. BAMSI constitutes a framework for efficient filtering of large genomic data sets that is flexible in the use of compute as well as storage resources. The data resulting from the filter is assumed to be greatly reduced in size, and can easily be downloaded or routed into e.g. a Hadoop cluster for subsequent interactive analysis using Hive, Spark or similar tools. In this respect, our framework also suggests a general model for making very large datasets of high scientific value more accessible by offering the possibility for organizations to share the cost of

  6. Integrating personal medicine into service delivery: empowering people in recovery.

    Science.gov (United States)

    MacDonald-Wilson, Kim L; Deegan, Patricia E; Hutchison, Shari L; Parrotta, Nancy; Schuster, James M

    2013-12-01

    Illness management and recovery strategies are considered evidence-based practices. The article describes how a web-based application, CommonGround, has been used to support implementation of such strategies in outpatient mental health services and assess its impact. The specific focus of this article is Personal Medicine, self-management strategies that are a salient component of the CommonGround intervention. With support from counties and a not-for-profit managed care organization, CommonGround has been introduced in 10 medication clinics, one Assertive Community Treatment (ACT) team, and one peer support center across Pennsylvania. Methods include analysis of data from the application's database and evaluation of health functioning, symptoms, and progress toward recovery. Health functioning improved over time and use of self-management strategies was associated with fewer concerns about medication side effects, fewer concerns about the impact of mental health medicine on physical health, more reports that mental health medicines were helping, and greater progress in individuals' recovery. Using Personal Medicine empowers individuals to work with their prescribers to find a "right balance" between what they do to be well and what they take to be well. This program helps individuals and their service team focus on individual strengths and resilient self-care strategies. More research is needed to assess factors that may predict changes in outcomes and how a web-based tool focused on self-management strategies may moderate those factors. PsycINFO Database Record (c) 2013 APA, all rights reserved.

  7. Service patterns related to successful employment outcomes of persons with traumatic brain injury in vocational rehabilitation.

    Science.gov (United States)

    Catalano, Denise; Pereira, Ana Paula; Wu, Ming-Yi; Ho, Hanson; Chan, Fong

    2006-01-01

    This study analyzed the Rehabilitation Services Administration (RSA) case service report (RSA-911) data for fiscal year 2004 to examine effects of demographic characteristics, work disincentives, and vocational rehabilitation services patterns on employment outcomes of persons with traumatic brain injuries (TBI). The results indicated that European Americans (53%) had appreciably higher competitive employment rates than Native American (50%), Asian Americans (44%), African Americans (42%), and Hispanic/Latino Americans (41%). Clients without co-occurring psychiatric disabilities had a higher employment rate (51%) than those with psychiatric disabilities (45%). Clients without work disincentives showed better employment outcomes (58%) than those with disincentives (45%). An important finding from this analysis was the central role of job search assistance, job placement assistance, and on-the-job support services for persons with TBI in predicting employment outcomes. A data mining technique, the exhaustive CHAID analysis, was used to examine the interaction effects of race, gender, work disincentives and service variables on employment outcomes. The results indicated that the TBI clients in this study could be segmented into 29 homogeneous subgroups with employment rates ranging from a low of 11% to a high of 82%, and these differences can be explained by differences in work disincentives, race, and rehabilitation service patterns.

  8. Intercomparison of personal radiation monitoring services in the Asia/Pacific region- our participation

    International Nuclear Information System (INIS)

    Dhond, R.V.; Worlikar, R.M.; Saralamma Nair, D.; Pathak, A.S.; Sankaran, M.P.; Shenoy, K.S.; Patel, P.H.

    1994-01-01

    Radiation Protection Services Division participated in the intercomparison of personal monitoring services in Asia/Pacific region during 1991-92 organised by Australian Radiation Laboratory (ARL). The exposed films returned by ARL were processed in our laboratory. The nature and energies of the incident radiations were identified and doses evaluated in terms of new operational quantities. The doses evaluated were within ± 20% except in two cases where energy determination did not match with the ARL values. The results are presented in the paper. (author). 1 ref., 3 tabs

  9. Genome-wide analyses of borderline personality features

    NARCIS (Netherlands)

    Lubke, G.H.; Laurin, C.; Amin, N.; Hottenga, J.J.; Willemsen, G.; Grootheest, G.; Abdellaoui, A.; Karssen, L.C.; Oostra, B.A.; van Duijn, C.M.; Penninx, B.W.J.H.; Boomsma, D.I.

    2014-01-01

    The heritability of borderline personality (BP) features has been established in multiple twin and family studies. Using data from the borderline subscale of the Personality Assessment Inventory Borderline Features Scale (PAI-BOR) collected in two Dutch cohorts (N=7125), the Netherlands Twin

  10. Diabetes in homeless persons: barriers and enablers to health as perceived by patients, medical, and social service providers.

    Science.gov (United States)

    Elder, Nancy C; Tubb, Matthew R

    2014-01-01

    The ways homelessness and diabetes affect each other is not well known. The authors sought to understand barriers and enablers to health for homeless people with diabetes as perceived by homeless persons and providers. The authors performed semistructured interviews with a sample of participants (seven homeless persons, six social service providers, and five medical providers) in an urban Midwest community. Data analysis was performed with the qualitative editing method. Participants described external factors (chaotic lifestyle, diet/food availability, access to care, and medications) and internal factors (competing demands, substance abuse, stress) that directly affect health. Social service providers were seen as peripheral to diabetes care, although all saw their primary functions as valuable. These factors and relationships are appropriately modeled in a complex adaptive chronic care model, where the framework is bottom up and stresses adaptability, self-organization, and empowerment. Adapting the care of homeless persons with diabetes to include involvement of patients and medical and social service providers must be emergent and responsive to changing needs.

  11. Verification criteria on the reliability of personal dosimetric services from x and gamma radiations

    International Nuclear Information System (INIS)

    Borasi, G.; Benco, A.; Kaftal, S.

    1990-07-01

    The paper presents the methods used by Working Group ENEA-EDP (Experts in Personal Dosimetry) to control the reliability of the Dosimetric Services operating in Italy and asking for the above controls on voluntary basis. Testing and irradiation test methods are explained as well as the evaluation criteria. The paper includes suggestions and guide-lines to gain the status of 'Reliable Service'. Technical equipment and operating procedures needed to pass the test are also illustrated. (author)

  12. Identifying relationships between the professional culture of pharmacy, pharmacists' personality traits, and the provision of advanced pharmacy services.

    Science.gov (United States)

    Rosenthal, Meagen; Tsao, Nicole W; Tsuyuki, Ross T; Marra, Carlo A

    2016-01-01

    Legislative changes are affording pharmacists the opportunity to provide more advanced pharmacy services. However, many pharmacists have not yet been able to provide these services sustainably. Research from implementation science suggests that before sustained change in pharmacy can be achieved an improved understanding of pharmacy context, through the professional culture of pharmacy and pharmacists' personality traits, is required. The primary objective of this study was to investigate possible relationships between cultural factors, and personality traits, and the uptake of advanced practice opportunities by pharmacists in British Columbia, Canada. The study design was a cross-sectional survey of registered, and practicing, pharmacists from one Canadian province. The survey gauged respondents' characteristics, practice setting, and the provision of advanced pharmacy services, and contained the Organizational Culture Profile (OCP), a measure of professional culture, as well as the Big Five Inventory (BFI), a measure of personality traits. A total of 945 completed survey instruments were returned. The majority of respondents were female (61%), the average age of respondents was 42 years (SD: 12), and the average number of years in practice was 19 (SD: 12). A significant positive relationship was identified for respondents perceiving greater value in the OCP factors competitiveness and innovation and providing a higher number of all advanced services. A positive relationship was observed for respondents scoring higher on the BFI traits extraversion and the immunizations provided, and agreeableness and openness and medication reviews completed. This is the first work to identify statistically significant relationships between the OCP and BFI, and the provision of advanced pharmacy services. As such, this work serves as a starting place from which to develop more detailed insight into how the professional culture of pharmacy and pharmacists personality traits may

  13. 76 FR 73521 - Statutory Bar to Appointment of Persons Who Fail To Register Under Selective Service Law

    Science.gov (United States)

    2011-11-29

    ... 3206-AM06 Statutory Bar to Appointment of Persons Who Fail To Register Under Selective Service Law... statutory bar on employment in an Executive agency of an individual who was required to register with the... as follows: Subpart G--Statutory Bar to Appointment of Persons Who Fail To Register Under the...

  14. Pre-service science teachers' teaching self-efficacy in relation to personality traits and academic self-regulation.

    Science.gov (United States)

    Senler, Burcu; Sungur-Vural, Semra

    2013-01-01

    The aim of this study is to examine the relationship among pre-service science teachers' personality traits, academic self-regulation and teaching self-efficacy by proposing and testing a conceptual model. For the specified purpose, 1794 pre-service science teachers participated in the study. The Teachers' Sense of Efficacy Scale, the NEO Five-Factor Inventory, and the Motivated Strategies for Learning Questionnaire were administered to assess pre-service science teachers' teaching self-efficacy, personality, and academic self-regulation respectively. Results showed that agreeableness, neuroticism, performance approach goals, and use of metacognitive strategies are positively linked to different dimensions of teaching self-efficacy, namely self-efficacy for student engagement, instructional strategies, and classroom management. In general, while agreeableness and neuroticism were found to be positively associated with different facets of self-regulation and teaching self-efficacy, openness was found to be negatively linked to these adaptive outcomes.

  15. Genomics in health and disease | Shawky | Egyptian Journal of ...

    African Journals Online (AJOL)

    Genomics is the study of all person's genes including interactions of those genes ... Our environment and our biology are two factors that strongly influence our health. ... The completion of the Human Genome Project signaled that the genome ...

  16. From plant genomes to phenotypes

    OpenAIRE

    Bolger, Marie; Gundlach, Heidrun; Scholz, Uwe; Mayer, Klaus; Usadel, Björn; Schwacke, Rainer; Schmutzer, Thomas; Chen, Jinbo; Arend, Daniel; Oppermann, Markus; Weise, Stephan; Lange, Matthias; Fiorani, Fabio; Spannagl, Manuel

    2017-01-01

    Recent advances in sequencing technologies have greatly accelerated the rate of plant genome and applied breeding research. Despite this advancing trend, plant genomes continue to present numerous difficulties to the standard tools and pipelines not only for genome assembly but also gene annotation and downstream analysis.Here we give a perspective on tools, resources and services necessary to assemble and analyze plant genomes and link them to plant phenotypes.

  17. Crowdfunding for Personalized Medicine Research.

    Science.gov (United States)

    Fumagalli, Danielle C; Gouw, Arvin M

    2015-12-01

    Given the current funding situation of the National Institutes of Health, getting funding for rare disease research is extremely difficult. In light of the enormous potential for research in the rare diseases and the scarcity of research funding, we provide a case study of a novel successful crowdfunding approach at a non-profit organization called Rare Genomics Institute. We partner with biotechnology companies willing to donate their products, such as mouse models, gene editing software, and sequencing services, for which researchers can apply. First, we find that personal stories can be powerful tools to seek funding from sympathetic donors who do not have the same rational considerations of impact and profit. Second, for foundations facing funding restrictions, company donations can be a valuable tool in addition to crowdfunding. Third, rare disease research is particularly rewarding for scientists as they proceed to be pioneers in the field during their academic careers. Overall, by connecting donors, foundations, researchers, and patients, crowdfunding has become a powerful alternative funding mechanism for personalized medicine.

  18. Reproductive Health Education and Services Needs of Internally Displaced Persons and Refugees following Disaster

    Science.gov (United States)

    Westhoff, Wayne W.; Lopez, Guillermo E.; Zapata, Lauren B.; Wilke Corvin, Jaime A.; Allen, Peter; McDermott, Robert J.

    2008-01-01

    Background: Following the occurrence of natural or man-made disaster, relief worker priorities include providing water, food, shelter, and immunizations for displaced persons. Like these essential initiatives, reproductive health education and services must also be incorporated into recovery efforts. Purpose: This study examined reproductive…

  19. Pattern of disability among persons who availed half-way home-care services for psychosocial rehabilitation

    Directory of Open Access Journals (Sweden)

    M Ranganathan

    2012-01-01

    Full Text Available Background: There is dearth of studies related to pattern of disability among persons who availed psychosocial rehabilitation services in India. We studied the pattern of disability among persons who availed half-way home-care services for psychosocial rehabilitation. Materials and Methods: Out of 130 case files of discharged patients, 50 files were randomly selected for data collection. Indian Disability Evaluation and Assessment Schedule was used to assess the pattern of disability in the sample. Results: The study revealed that only one-third (35% of the residents had disability in self-care, 41% in communication and understanding and 47% in interpersonal relationship. Overall, majority (76% of the respondents had moderate level of psychiatric disability at the time of discharge from half-way home. There was no significant relationship between gender and type of psychiatric illness with the level of disability. The overall disability correlated positively with the duration of illness (rs=0.39. Conclusion: Three-fourth of the residents who availed half-way home-care services had moderate level of disability.

  20. Genomics With Cloud Computing

    Directory of Open Access Journals (Sweden)

    Sukhamrit Kaur

    2015-04-01

    Full Text Available Abstract Genomics is study of genome which provides large amount of data for which large storage and computation power is needed. These issues are solved by cloud computing that provides various cloud platforms for genomics. These platforms provides many services to user like easy access to data easy sharing and transfer providing storage in hundreds of terabytes more computational power. Some cloud platforms are Google genomics DNAnexus and Globus genomics. Various features of cloud computing to genomics are like easy access and sharing of data security of data less cost to pay for resources but still there are some demerits like large time needed to transfer data less network bandwidth.

  1. 20 CFR 1010.210 - In which Department job training programs do covered persons receive priority of service?

    Science.gov (United States)

    2010-04-01

    ... 20 Employees' Benefits 3 2010-04-01 2010-04-01 false In which Department job training programs do... job training programs do covered persons receive priority of service? (a) Priority of service applies to every qualified job training program funded, in whole or in part, by the Department, including: (1...

  2. Scalable Architecture for Personalized Healthcare Service Recommendation using Big Data Lake

    OpenAIRE

    Rangarajan, Sarathkumar; Liu, Huai; Wang, Hua; Wang, Chuan-Long

    2018-01-01

    The personalized health care service utilizes the relational patient data and big data analytics to tailor the medication recommendations. However, most of the health care data are in unstructured form and it consumes a lot of time and effort to pull them into relational form. This study proposes a novel data lake architecture to reduce the data ingestion time and improve the precision of healthcare analytics. It also removes the data silos and enhances the analytics by allowing the connectiv...

  3. Consumers report lower confidence in their genetics knowledge following direct-to-consumer personal genomic testing.

    Science.gov (United States)

    Carere, Deanna Alexis; Kraft, Peter; Kaphingst, Kimberly A; Roberts, J Scott; Green, Robert C

    2016-01-01

    The aim of this study was to measure changes to genetics knowledge and self-efficacy following personal genomic testing (PGT). New customers of 23andMe and Pathway Genomics completed a series of online surveys. We measured genetics knowledge (nine true/false items) and genetics self-efficacy (five Likert-scale items) before receipt of results and 6 months after results and used paired methods to evaluate change over time. Correlates of change (e.g., decision regret) were identified using linear regression. 998 PGT customers (59.9% female; 85.8% White; mean age 46.9 ± 15.5 years) were included in our analyses. Mean genetics knowledge score was 8.15 ± 0.95 (out of 9) at baseline and 8.25 ± 0.92 at 6 months (P = 0.0024). Mean self-efficacy score was 29.06 ± 5.59 (out of 35) at baseline and 27.7 ± 5.46 at 6 months (P reported lower self-efficacy following PGT. Change in self-efficacy was positively associated with health-care provider consultation (P = 0.0042), impact of PGT on perceived control over one's health (P consumers in response to receiving complex genetic information.Genet Med 18 1, 65-72.

  4. The third person in the room: The needs of care partners of older people in home care services-A systematic review from a person-centred perspective.

    Science.gov (United States)

    Anker-Hansen, Camilla; Skovdahl, Kirsti; McCormack, Brendan; Tønnessen, Siri

    2018-04-01

    To identify and synthesise the needs of care partners of older people living at home with assistance from home care services. "Ageing in place" is a promoted concept where care partners and home care services play significant roles. Identifying the needs of care partners and finding systematic ways of meeting them can help care partners to cope with their role. This study is based on the PRISMA reporting guidelines. The systematic review of qualitative and quantitative studies was guided by the Joanna Briggs Institute methodology. In total, 16 studies were included in the review, eleven qualitative and five quantitative. Three main categories were revealed in the analysis: the need for quality interaction, the need for a shared approach to care and the need to feel empowered. Care partners of older people have several, continuously unmet needs. A person-centred perspective can contribute new understandings of how to meet these needs. A knowledge gap has been identified regarding the needs of care partners of older people with mental health problems. There is a need to develop a tool for systematic collaboration between home care services and care partners, so that the identified needs can be met in a more thorough, systematic and person-centred way. The carers in home care services need competence to identify and meet the needs of care partners. The implementation of person-centred values in home care services can contribute to meet the needs of care partners to a greater extent than today. Future research on the needs of care partners of older people with mental health problems needs to be undertaken. © 2017 John Wiley & Sons Ltd.

  5. Complementary person-environment fit as a predictor of job pursuit intentions in the service industry

    OpenAIRE

    Bednarska, Marlena A.

    2016-01-01

    There is an intrinsic link between the success of service firms and the availability of appropriate labor resources, making employee attraction and retention a critical concern for service organizations. Effects of recruitment efforts are influenced by applicants' subjective person-environment (P-E) fit, referring to the compatibility between an individual and a work environment. The purpose of this paper is to examine the role of employer attractiveness in the relationship between potential ...

  6. Personal Establishment and Accomplishment of Public Service Values

    Directory of Open Access Journals (Sweden)

    Mirko PEČARIČ

    2013-02-01

    Full Text Available Public objectives are mostly developed within public administrations, which despite apparent Weberian rationality work mainly evolutionarily, i.e. by imitation of what already works in other areas and what randomly brings good results. The rule of law that is fundamental to the Western democratic order cannot work without morality and legal values. If we want workable values, we must understand them at their core, which is not the domain of law. The starting point is an individual who operates primarily on the basis of his personal characteristics regardless of all the present theories of the public administration. Entering into the unknown with full preparedness for the changes will be the motto of the future public administration. We are much closer to such a stance if we know how the public service values are really established and implemented.

  7. Development of Measures to Assess Personal Recovery in Young People Treated in Specialist Mental Health Services.

    Science.gov (United States)

    John, Mary; Jeffries, Fiona W; Acuna-Rivera, Marcela; Warren, Fiona; Simonds, Laura M

    2015-01-01

    Recovery has become a central concept in mental health service delivery, and several recovery-focused measures exist for adults. The concept's applicability to young people's mental health experience has been neglected, and no measures yet exist. Aim The aim of this work is to develop measures of recovery for use in specialist child and adolescent mental health services. On the basis of 21 semi-structured interviews, three recovery measures were devised, one for completion by the young person and two for completion by the parent/carer. Two parent/carer measures were devised in order to assess both their perspective on their child's recovery and their own recovery process. The questionnaires were administered to a UK sample of 47 young people (10-18 years old) with anxiety and depression and their parents, along with a measure used to routinely assess treatment progress and outcome and a measure of self-esteem. All three measures had high internal consistency (alpha ≥ 0.89). Young people's recovery scores were correlated negatively with scores on a measure used to routinely assess treatment progress and outcome (r = -0.75) and positively with self-esteem (r = 0.84). Parent and young persons' reports of the young person's recovery were positively correlated (r = 0.61). Parent report of the young person's recovery and of their own recovery process were positively correlated (r = 0.75). The three measures have the potential to be used in mental health services to assess recovery processes in young people with mental health difficulties and correspondence with symptomatic improvement. The measures provide a novel way of capturing the parental/caregiver perspective on recovery and caregivers' own wellbeing. No tools exist to evaluate recovery-relevant processes in young people treated in specialist mental health services. This study reports on the development and psychometric evaluation of three self-report recovery-relevant assessments for young

  8. Community managed services for persons with intellectual disability: Andhra Pradesh experience.

    Science.gov (United States)

    Narayan, Jayanthi; Pratapkumar, Raja; Reddy, Sudhakara P

    2017-09-01

    In resource poor settings innovative and bottom-up approaches are required to provide services to people with with disabilities. In this context, the present paper explains a community-based model of manpower development and coordination of services for people with intellectual disabilities in unified state of Andhra Pradesh in India. Women with disabilities from the village were identified, and those willing to be trained to work as community resource persons (CRPs) were selected and given hands-on training in a phased manner. A total of 130 women were trained in five groups of 25-30 per group and were deployed in the community to screen, identify and refer children with intellectual disabilities. The training content included basic stimulation and interface with functionaries of other government departments of health, education and welfare to ensure comprehensive service delivery. Neighbourhood centres (NHCs) were established where the CRPs could meet with families collectively. The results indicated that the CRPs were welcomed by the families. The NHCs established primarily as recreation centres, promoted inclusion and functioned as information dissemination centre. The services provided by the CRPs were owned and monitored by the Women's self-help group and the disability groups thus ensuring sustainability of the model.

  9. An inexpensive, interdisciplinary, methodology to conduct an impact study of homeless persons on hospital based services.

    Science.gov (United States)

    Parker, R David; Regier, Michael; Brown, Zachary; Davis, Stephen

    2015-02-01

    Homelessness is a primary concern for community health. Scientific literature on homelessness is wide ranging and diverse. One opportunity to add to existing literature is the development and testing of affordable, easily implemented methods for measuring the impact of homeless on the healthcare system. Such methodological approaches rely on the strengths in a multidisciplinary approach, including providers, both healthcare and homeless services and applied clinical researchers. This paper is a proof of concept for a methodology which is easily adaptable nationwide, given the mandated implementation of homeless management information systems in the United States and other countries; medical billing systems by hospitals; and research methods of researchers. Adaptation is independent of geographic region, budget restraints, specific agency skill sets, and many other factors that impact the application of a consistent methodological science based approach to assess and address homelessness. We conducted a secondary data analysis merging data from homeless utilization and hospital case based data. These data detailed care utilization among homeless persons in a small, Appalachian city in the United States. In our sample of 269 persons who received at least one hospital based service and one homeless service between July 1, 2012 and June 30, 2013, the total billed costs were $5,979,463 with 10 people costing more than one-third ($1,957,469) of the total. Those persons were primarily men, living in an emergency shelter, with pre-existing disabling conditions. We theorize that targeted services, including Housing First, would be an effective intervention. This is proposed in a future study.

  10. Delivering good service: personal resources, job satisfaction and nurses' 'customer' (patient) orientation.

    Science.gov (United States)

    Gountas, Sandra; Gountas, John; Soutar, Geoffrey; Mavondo, Felix

    2014-07-01

    To explore the complex relationships between nurses' personal resources, job satisfaction and 'customer' (patient) orientation. Previous research has shown that nursing is highly intensive, emotionally charged work, which affects nurses' job performance and their customer orientation as well as patient or 'customer' satisfaction. This study contributes to the literature by examining how nurses' personal resources relate to their personal satisfaction and customer orientation and the relationships between them. Specifically, this study explores the effects of two facets of emotional labour (deep acting and surface acting), empathic concern, self-efficacy and emotional exhaustion on personal job satisfaction and customer orientation. We also test the moderating effects of inauthenticity and emotional contagion. A quantitative survey. Data were collected through a self-completion questionnaire administered to a sample of 159 Australian nurses, in a public teaching hospital, in 2010. The data were analysed using Partial Least Square analysis. Partial Least Square analysis indicates that the final model is a good fit to the data (Goodness of Fit = 0.51). Deep acting and surface acting have different effects (positive and negative) on job satisfaction and 'customer' orientation, self-efficacy has a positive effect on both and emotional exhaustion has a positive effect on customer orientation and a negative effect on job satisfaction. The moderating effects of emotional contagion and empathic concern, in the final model, are discussed. Understanding the complex interactions between personal resources, job satisfaction and customer orientation helps to increase service providers' (nurses in this study) personal satisfaction and 'customer' orientation particularly in difficult contexts. © 2013 John Wiley & Sons Ltd.

  11. Professional Aspirations among Pre-Service Teachers: Personal Responsibility, Time Perspectives, and Career Choice Satisfaction

    Science.gov (United States)

    Eren, Altay

    2017-01-01

    Exploring the direct and indirect effects of pre-service teachers' sense of personal responsibility on their professional aspirations through affective (i.e., career choice satisfaction) and cognitive (i.e., time perspectives) variables may enable teacher educators and policy makers to better describe the factors influencing teacher development in…

  12. Personalized biochemistry and biophysics.

    Science.gov (United States)

    Kroncke, Brett M; Vanoye, Carlos G; Meiler, Jens; George, Alfred L; Sanders, Charles R

    2015-04-28

    Whole human genome sequencing of individuals is becoming rapid and inexpensive, enabling new strategies for using personal genome information to help diagnose, treat, and even prevent human disorders for which genetic variations are causative or are known to be risk factors. Many of the exploding number of newly discovered genetic variations alter the structure, function, dynamics, stability, and/or interactions of specific proteins and RNA molecules. Accordingly, there are a host of opportunities for biochemists and biophysicists to participate in (1) developing tools to allow accurate and sometimes medically actionable assessment of the potential pathogenicity of individual variations and (2) establishing the mechanistic linkage between pathogenic variations and their physiological consequences, providing a rational basis for treatment or preventive care. In this review, we provide an overview of these opportunities and their associated challenges in light of the current status of genomic science and personalized medicine, the latter often termed precision medicine.

  13. Personalized Biochemistry and Biophysics

    Science.gov (United States)

    2016-01-01

    Whole human genome sequencing of individuals is becoming rapid and inexpensive, enabling new strategies for using personal genome information to help diagnose, treat, and even prevent human disorders for which genetic variations are causative or are known to be risk factors. Many of the exploding number of newly discovered genetic variations alter the structure, function, dynamics, stability, and/or interactions of specific proteins and RNA molecules. Accordingly, there are a host of opportunities for biochemists and biophysicists to participate in (1) developing tools to allow accurate and sometimes medically actionable assessment of the potential pathogenicity of individual variations and (2) establishing the mechanistic linkage between pathogenic variations and their physiological consequences, providing a rational basis for treatment or preventive care. In this review, we provide an overview of these opportunities and their associated challenges in light of the current status of genomic science and personalized medicine, the latter often termed precision medicine. PMID:25856502

  14. An eMERGE Clinical Center at Partners Personalized Medicine

    Directory of Open Access Journals (Sweden)

    Jordan W. Smoller

    2016-01-01

    Full Text Available The integration of electronic medical records (EMRs and genomic research has become a major component of efforts to advance personalized and precision medicine. The Electronic Medical Records and Genomics (eMERGE network, initiated in 2007, is an NIH-funded consortium devoted to genomic discovery and implementation research by leveraging biorepositories linked to EMRs. In its most recent phase, eMERGE III, the network is focused on facilitating implementation of genomic medicine by detecting and disclosing rare pathogenic variants in clinically relevant genes. Partners Personalized Medicine (PPM is a center dedicated to translating personalized medicine into clinical practice within Partners HealthCare. One component of the PPM is the Partners Healthcare Biobank, a biorepository comprising broadly consented DNA samples linked to the Partners longitudinal EMR. In 2015, PPM joined the eMERGE Phase III network. Here we describe the elements of the eMERGE clinical center at PPM, including plans for genomic discovery using EMR phenotypes, evaluation of rare variant penetrance and pleiotropy, and a novel randomized trial of the impact of returning genetic results to patients and clinicians.

  15. Medicaid Personal Care Services for Children with Intellectual Disabilities: What Assistance Is Provided? When Is Assistance Provided?

    Science.gov (United States)

    Elliot, Timothy R.; Patnaik, Ashweeta; Naiser, Emily; Fournier, Constance J.; McMaughan, Darcy K.; Dyer, James A.; Phillips, Charles D.

    2014-01-01

    We report on the nature and timing of services provided to children with an intellectual disability (ID) identified by a new comprehensive assessment and care planning tool used to evaluate children's needs for Medicaid Personal Care Services (PCS) in Texas. The new assessment procedure resulted from a legal settlement with the advocacy community.…

  16. Combinations of Personal Responsibility: Differences on Pre-service and Practicing Teachers' Efficacy, Engagement, Classroom Goal Structures and Wellbeing.

    Science.gov (United States)

    Daniels, Lia M; Radil, Amanda I; Goegan, Lauren D

    2017-01-01

    Pre-service and practicing teachers feel responsible for a range of educational activities. Four domains of personal responsibility emerging in the literature are: student achievement, student motivation, relationships with students, and responsibility for ones own teaching. To date, most research has used variable-centered approaches to examining responsibilities even though the domains appear related. In two separate samples we used cluster analysis to explore how pre-service ( n = 130) and practicing ( n = 105) teachers combined personal responsibilities and their impact on three professional cognitions and their wellbeing. Both groups had low and high responsibility clusters but the third cluster differed: Pre-service teachers combined responsibilities for relationships and their own teaching in a cluster we refer to as teacher-based responsibility; whereas, practicing teachers combined achievement and motivation in a cluster we refer to as student-outcome focused responsibility. These combinations affected outcomes for pre-service but not practicing teachers. Pre-service teachers in the low responsibility cluster reported less engagement, less mastery approaches to instruction, and more performance goal structures than the other two clusters.

  17. [Hardy personality, self-efficacy, and general health in nursing professionals of intensive and emergency services].

    Science.gov (United States)

    Ríos Rísquez, María Isabel; Sánchez Meca, Julio; Godoy Fernández, Carmen

    2010-11-01

    In this study, the predictive power of hardy personality and generalized self-efficacy on general health perception was investigated in a sample of nursing personnel working in emergency and intensive care services. A cross-sectional retrospective design was used, and the following measurement instruments were applied: a sociodemographic and work questionnaire, Goldberg's GHQ-28 Health Questionnaire, the Baessler and Schwarzer General Self-efficacy Questionnaire, and the Hardy Personality Subscale of Moreno's Nursing Burnout Questionnaire (CDPE). The results revealed a positive and statistically significant relationship between the individual variables of generalized self-efficacy and hardy personality. A canonical correlation analysis carried out on the psychological distress symptoms with self-efficacy and hardy personality as predictor variables, led us to emphasize the relevance of the construct total hardy personality as a predictor and, consequently, as a protective factor against the onset of psychological distress symptoms in the sample of professionals studied. Lastly, the implications of the results for clinical practice are discussed.

  18. Pre-Service Teachers' Personal Value Orientations and Attitudes toward the Teaching Profession in Turkey

    Science.gov (United States)

    Necla, Sahin-Firat

    2016-01-01

    This study examined the relationship between pre-service teachers' personal value orientations and their attitudes toward the teaching profession. The study was conducted with the participation of 612 students at DEU's Buca Faculty of Education during the 2014/2015 academic year. Data were collected using the Portrait Values Questionnaire (PVQ)…

  19. How do students react to analyzing their own genomes in a whole-genome sequencing course?: outcomes of a longitudinal cohort study.

    Science.gov (United States)

    Sanderson, Saskia C; Linderman, Michael D; Zinberg, Randi; Bashir, Ali; Kasarskis, Andrew; Zweig, Micol; Suckiel, Sabrina; Shah, Hardik; Mahajan, Milind; Diaz, George A; Schadt, Eric E

    2015-11-01

    Health-care professionals need to be trained to work with whole-genome sequencing (WGS) in their practice. Our aim was to explore how students responded to a novel genome analysis course that included the option to analyze their own genomes. This was an observational cohort study. Questionnaires were administered before (T3) and after the genome analysis course (T4), as well as 6 months later (T5). In-depth interviews were conducted at T5. All students (n = 19) opted to analyze their own genomes. At T5, 12 of 15 students stated that analyzing their own genomes had been useful. Ten reported they had applied their knowledge in the workplace. Technical WGS knowledge increased (mean of 63.8% at T3, mean of 72.5% at T4; P = 0.005). In-depth interviews suggested that analyzing their own genomes may increase students' motivation to learn and their understanding of the patient experience. Most (but not all) of the students reported low levels of WGS results-related distress and low levels of regret about their decision to analyze their own genomes. Giving students the option of analyzing their own genomes may increase motivation to learn, but some students may experience personal WGS results-related distress and regret. Additional evidence is required before considering incorporating optional personal genome analysis into medical education on a large scale.

  20. Introduction of a new dosimetry system based on optically stimulated luminescence (OSL) in our personal monitoring service

    International Nuclear Information System (INIS)

    Hubner, S.

    2014-08-01

    The personal monitoring service named Auswertungsstelle is part of the Helmholtz Zentrum Munchen, a non-profit-making research center in Germany. As one of the four monitoring services in Germany, we have been a reliable partner in radiation protection for more than 60 years. With about 1.9 million dose assessments per year, we are the largest monitoring service in Europe. For dozens of years, our main dosimeter used in whole-body dosimetry has been a film dosimeter. Although its dosimetric properties are still up to date, film dosimetry won.t be a sustainable technique for the use in monitoring services. Therefore, a project with the objective of investigating alternative dosimetric materials and methods was launched in the late 1990 at the Helmholtz Zentrum Munchen. Based on this research work, the use of Be O as an OSL dosimeter was studied by the radiation physics group of the Tu Dresden, by order and on account of the Auswertungsstelle at the Helmholtz Zentrum Munchen. It was shown, that ceramic Be O features promising dosimetric properties, making Be O detectors particularly suitable for being used in all applications in whole-body dosimetry measuring photons. Ceramic Be O material has an excellent resistance to environmental influences. The Be O chips are almost tissue equivalent. Therefore, these detectors show low photon energy dependence. A new personal dosimetry system based on the OSL dosimetry of Be O was developed. Applying this system, the Auswertungsstelle offers OSL-dosimeters for official monitoring of the Personal Dose Equivalent Hp(10) since 2011. This OSL-System is accredited according to DIN IEC 62387 and we obtained the corresponding type approval by the Ptb, the national metrology institute in Germany. Sophisticated logistics was developed and installed. High degree of automation was achieved by robots for dosimeter assembly and machines for packing, labelling and unpacking of the dosimeters. To become a sustainable dosimetry system not only

  1. Introduction of a new dosimetry system based on optically stimulated luminescence (OSL) in our personal monitoring service

    Energy Technology Data Exchange (ETDEWEB)

    Hubner, S., E-mail: stephan.huebner@helmholtz-muenchen.de [Helmholtz Zentrum Munchen, German Research Center for Environmental Health, D-80219, Munich (Georgia)

    2014-08-15

    The personal monitoring service named Auswertungsstelle is part of the Helmholtz Zentrum Munchen, a non-profit-making research center in Germany. As one of the four monitoring services in Germany, we have been a reliable partner in radiation protection for more than 60 years. With about 1.9 million dose assessments per year, we are the largest monitoring service in Europe. For dozens of years, our main dosimeter used in whole-body dosimetry has been a film dosimeter. Although its dosimetric properties are still up to date, film dosimetry won.t be a sustainable technique for the use in monitoring services. Therefore, a project with the objective of investigating alternative dosimetric materials and methods was launched in the late 1990 at the Helmholtz Zentrum Munchen. Based on this research work, the use of Be O as an OSL dosimeter was studied by the radiation physics group of the Tu Dresden, by order and on account of the Auswertungsstelle at the Helmholtz Zentrum Munchen. It was shown, that ceramic Be O features promising dosimetric properties, making Be O detectors particularly suitable for being used in all applications in whole-body dosimetry measuring photons. Ceramic Be O material has an excellent resistance to environmental influences. The Be O chips are almost tissue equivalent. Therefore, these detectors show low photon energy dependence. A new personal dosimetry system based on the OSL dosimetry of Be O was developed. Applying this system, the Auswertungsstelle offers OSL-dosimeters for official monitoring of the Personal Dose Equivalent Hp(10) since 2011. This OSL-System is accredited according to DIN IEC 62387 and we obtained the corresponding type approval by the Ptb, the national metrology institute in Germany. Sophisticated logistics was developed and installed. High degree of automation was achieved by robots for dosimeter assembly and machines for packing, labelling and unpacking of the dosimeters. To become a sustainable dosimetry system not only

  2. Diet and exercise changes following direct-to-consumer personal genomic testing.

    Science.gov (United States)

    Nielsen, Daiva Elena; Carere, Deanna Alexis; Wang, Catharine; Roberts, J Scott; Green, Robert C

    2017-05-02

    The impacts of direct-to-consumer personal genomic testing (PGT) on health behaviors such as diet and exercise are poorly understood. Our investigation aimed to evaluate diet and exercise changes following PGT and to determine if changes were associated with genetic test results obtained from PGT. Customers of 23andMe and Pathway Genomics completed a web-based survey prior to receiving PGT results (baseline) and 6 months post-results. Fruit and vegetable intake (servings/day), and light, vigorous and strength exercise frequency (days/week) were assessed. Changes in diet and exercise were examined using paired t-tests and linear regressions. Additional analyses examined whether outcomes differed by baseline self-reported health (SRH) or content of PGT results. Longitudinal data were available for 1,002 participants. Significant increases were observed for vegetable intake (mean Δ = 0.11 (95% CI = 0.05, 0.17), p = 0.0003) and strength exercise (Δ = 0.14 (0.03, 0.25), p = 0.0153). When stratified by SRH, significant increases were observed for all outcomes among lower SRH participants: fruit intake, Δ = 0.11 (0.02, 0.21), p = 0.0148; vegetable intake, Δ = 0.16 (0.07, 0.25), p = 0.0005; light exercise, Δ = 0.25 (0.03, 0.47), p = 0.0263; vigorous exercise, Δ = 0.23 (0.06, 0.41), p = 0.0097; strength exercise, Δ = 0.19 (0.01, 0.37), p = 0.0369. A significant change among higher SRH participants was only observed for light exercise, and in the opposite direction: Δ = -0.2468 (-0.06, -0.44), p = 0.0111. Genetic results were not consistently associated with any diet or exercise changes. The experience of PGT was associated with modest, mostly positive changes in diet and exercise. Associations were independent of genetic results from PGT.

  3. Dosimetric quality assurance interpreted for ISO 17025 in public health England's personal dosimetry service

    International Nuclear Information System (INIS)

    Gilvin, P.J.; Gibbens, N.J.; Baker, S.T.

    2016-01-01

    Many individual monitoring services (IMSs) have long experience in delivering high-quality dosimetry, and many follow rigorous quality assurance (QA) procedures. Typically, these procedures have been developed through experience and are highly effective in maintaining high-quality dose measurements. However, it is not always clear how the range of QA procedures normally followed by IMSs maps on to the various requirements of ISO 17025. The Personal Dosimetry Service of Public Health England has interpreted its QA procedures both in operating existing services and in developing a new one. (authors)

  4. Evaluation of a Community Reintegration Outpatient Program Service for Community-Dwelling Persons with Spinal Cord Injury

    Directory of Open Access Journals (Sweden)

    Alana Zinman

    2014-01-01

    Full Text Available Objective. To evaluate the effectiveness of a community reintegration outpatient (CROP service for promoting well-being and community participation following spinal cord injury (SCI. Participants. Community-dwelling adults (N=14 with traumatic and nontraumatic SCI. Interventions. The CROP service is a 12-week (1 × week; 120 minutes interprofessional closed therapeutic education service. Main Outcome Measure(s. Moorong Self-Efficacy Scale (MSES; Impact on Participation and Autonomy (IPA; Positive Affect and Negative Affect Scale (PANAS; Coping Inventory of Stressful Situations (CISS; World Health Organization Quality of Life (WHOQOL-BREF; semistructured qualitative interviews. Methods. Twenty-one participants were recruited from two subsequent CROP services, with only 14 persons completing all data assessments. Data were collected at baseline (week 0, at exit (week 12, and at a three-month follow-up. Semistructured interviews were conducted at exit. Results. Self-efficacy (MSES and positive affect (PANAS improved from baseline to exit (P<.05, but the changes were not maintained at follow-up. Qualitative analysis identified four major themes related to therapeutic benefits: (1 role of self; (2 knowledge acquisition; (3 skill application; and (4 group processes. Conclusions. Participation in a therapeutic education service has the potential to improve well-being in persons with SCI, but there is a need to identify strategies to maintain long-term gains.

  5. Buffering the negative effects of employee surface acting: the moderating role of employee-customer relationship strength and personalized services.

    Science.gov (United States)

    Wang, Karyn L; Groth, Markus

    2014-03-01

    The impact of emotional labor on customer outcomes is gaining considerable attention in the literature, with research suggesting that the authenticity of emotional displays may positively impact customer outcomes. However, research investigating the impact of more inauthentic emotions on service delivery outcomes is mixed (see Chi, Grandey, Diamond, & Krimmel, 2011). This study explores 2 potential reasons for why the service outcomes of inauthentic emotions are largely inconsistent: the impact of distinct surface acting strategies and the role of service delivery context. Drawing on social-functional theories of emotions, we surveyed 243 dyads of employees and customers from a wide variety of services to examine the links between employee surface acting and customer service satisfaction, and whether this relationship is moderated by relationship strength and service personalization. Our findings suggest that faking positive emotions has no bearing on service satisfaction, but suppressing negative emotions interacts with contextual factors to predict customers' service satisfaction, in line with social-functional theories of emotions. Specifically, customers who know the employee well are less sensitive to the negative effects of suppressed negative emotions, and customers in highly personalized service encounters are more sensitive to the negative effects of suppressed negative emotions. We conclude with a discussion of theoretical and practical implications.

  6. Personalized medicine and access to genetic technologies.

    Science.gov (United States)

    den Exter, André

    2010-01-01

    Personalized medicine started after the Human Genome Project and is a relatively new concept that will dramatically change clinical practice. It offers clear clinical advantages by applying genetic diagnostic tests and then treating the patient with targeted medicines based on his or her genetic make-up. Its potential seems promising but there are quite a few legal concerns. One of these questions deals with the right to health care and access to genetic technologies. In this paper, the author explains the meaning of such a right to health care under international human rights law, its relevance for making genetic services eligible for public funding, how to cope with quality concerns of commercial testing, and finally, the patentability controversy and clinical access to genetic information. Apart from more traditional human rights concerns (consent, privacy, confidentiality) and genetics, States should be aware of the meaning of the equal access concept under international law and its consequences when introducing new technologies such genetic testing and services.

  7. Personality, depressive symptoms and prior trauma exposure of new recruits at two Metropolitan Police Service academies in South Africa

    OpenAIRE

    U Subramaney; E Libhaber; N Pitts; M Vorster

    2012-01-01

    Background. Police officers are predisposed to trauma exposure. The development of depression and post-traumatic stress disorder (PTSD) may be influenced by personality style, prior exposure to traumatic events and prior depression. Objectives. To describe the personality profiles of new Metropolitan Police Service (MPS) officers, and to determine the association between personality profiles, trauma exposure and depressive symptoms. Methods. We performed a cross-sectional analysis o...

  8. Evaluation of the use of personal protective equipment in radiodiagnostic services in Sergipe

    International Nuclear Information System (INIS)

    Santos, Lucas R. dos; Oliveira, Celso A.; Silva, Fabio A.R.; Souza, Divanizia N.

    2008-01-01

    The theme ionizing radiation is frequently associated with danger. Therefore this subject induces to think about accessories to personal protection. These accessories can contain metal heavy (as example, lead) so that we have an efficient protection. Our analysis was done with the main objective of evidence that is not enough the radiodiagnostic services have personal protective equipment to disposal to the radiology technicians have an efficient protection, because the procedures with ionizing radiation will be safe only with the use accomplish of the security procedures and of adequate use and storing of personal protective equipment. In our analysis the accessories in question were the lead rubber X-ray protection aprons and thyroid gland protectors. We have tested these accessories through of a similar methodology utilized to checking the half-value layer of the X-ray units. It was investigated also the importance given to use of these accessories by the radiology technicians. (author)

  9. The right place? Users and professionals' constructions of the place's influence on personal recovery in community mental health services.

    Science.gov (United States)

    Femdal, Ingrid

    2018-01-01

    Current mental health policy emphasizes the importance of community-based service delivery for people with mental health problems to encompass personal recovery. The aim of this study is to explore how users and professionals construct the place's influence on personal recovery in community mental health services. This is a qualitative, interpretive study based on ten individual, semi-structured interviews with users and professionals, respectively. A discourse analysis inspired by the work of Foucault was used to analyze the interviews. The findings show how place can be constructed as a potential for and as a barrier against recovery. Constructions of the aim of the services matter when choosing a place for the services. Further, constructions of user-professional relationships and flexibility are important in the constructions of an appropriate place for the services. The aim of the service, the user-professional relationship, and flexibility in choosing place were essential in the participants' constructions. To find "the right place" for mental health services was constructed as context-sensitive and complex processes of assessment and co-determination. Trial registration The study is approved by the Regional Committee for Medical Research Ethics, Norway (REK-Midt 2011/2057).

  10. The Neutron Personal Dosimetry Service of the Centre for Radiation, Chemical and Environmental Hazards, PHE-UK; Servicio de Dosimetría Personal Neutrónica del Centro para Emergencias Radiológicas, Químicas y Medioambientales, PHE-UK

    Energy Technology Data Exchange (ETDEWEB)

    Campo Blanco, X.

    2015-07-01

    The Centre for Radiation, Chemical and Environmental Hazards (CRCEH), that belongs to Public Health England (PHE), hosts the official Neutron Personal Dosimetry Service of the United Kingdom. They use etched-track detectors, made of a material called PADC (poly-allyl diglycol carbonate), to determinate de neutron personal dose. A two weeks visit has been made to this center, in order to learn about the facilities, the methods employed and the legislative framework of the Neutron Personal Dosimetry Service. In this work the main results of this visits are shown, which are interesting for the future development of an official neutron personal dosimetry service in Spain.

  11. RadGenomics project

    Energy Technology Data Exchange (ETDEWEB)

    Iwakawa, Mayumi; Imai, Takashi; Harada, Yoshinobu [National Inst. of Radiological Sciences, Chiba (Japan). Frontier Research Center] [and others

    2002-06-01

    Human health is determined by a complex interplay of factors, predominantly between genetic susceptibility, environmental conditions and aging. The ultimate aim of the RadGenomics (Radiation Genomics) project is to understand the implications of heterogeneity in responses to ionizing radiation arising from genetic variation between individuals in the human population. The rapid progression of the human genome sequencing and the recent development of new technologies in molecular genetics are providing us with new opportunities to understand the genetic basis of individual differences in susceptibility to natural and/or artificial environmental factors, including radiation exposure. The RadGenomics project will inevitably lead to improved protocols for personalized radiotherapy and reductions in the potential side effects of such treatment. The project will contribute to future research into the molecular mechanisms of radiation sensitivity in humans and will stimulate the development of new high-throughput technologies for a broader application of biological and medical sciences. The staff members are specialists in a variety of fields, including genome science, radiation biology, medical science, molecular biology, and informatics, and have joined the RadGenomics project from various universities, companies, and research institutes. The project started in April 2001. (author)

  12. RadGenomics project

    International Nuclear Information System (INIS)

    Iwakawa, Mayumi; Imai, Takashi; Harada, Yoshinobu

    2002-01-01

    Human health is determined by a complex interplay of factors, predominantly between genetic susceptibility, environmental conditions and aging. The ultimate aim of the RadGenomics (Radiation Genomics) project is to understand the implications of heterogeneity in responses to ionizing radiation arising from genetic variation between individuals in the human population. The rapid progression of the human genome sequencing and the recent development of new technologies in molecular genetics are providing us with new opportunities to understand the genetic basis of individual differences in susceptibility to natural and/or artificial environmental factors, including radiation exposure. The RadGenomics project will inevitably lead to improved protocols for personalized radiotherapy and reductions in the potential side effects of such treatment. The project will contribute to future research into the molecular mechanisms of radiation sensitivity in humans and will stimulate the development of new high-throughput technologies for a broader application of biological and medical sciences. The staff members are specialists in a variety of fields, including genome science, radiation biology, medical science, molecular biology, and informatics, and have joined the RadGenomics project from various universities, companies, and research institutes. The project started in April 2001. (author)

  13. Alcohol and substance use history among ADHD adults: the relationship with persistent and remitting symptoms, personality, employment, and history of service use.

    Science.gov (United States)

    Huntley, Zoe; Young, Susan

    2014-01-01

    To profile substance use, personality, service use, and employment in adults with ADHD. The sample consisted of 216 consecutive referrals to an adult ADHD service and classified with ADHD, partially or fully remitted ADHD, or no ADHD. Normal controls (n = 33) were recruited from a general practitioner's center. Participants completed measures of alcohol and illicit substance use, employment, service use, ADHD symptoms, and personality. High rates of substance use were found in participants with current ADHD diagnoses. ADHD participants showed increased rates of personality trait or disorder scores and unemployment. There was some indication that those with ADHD and substance-related impairment place higher demand on services. Individuals with partially remitted ADHD showed similar substance use to those with current ADHD, whereas those in full remission were comparable with normal controls. Although ADHD symptoms may remit with time, individuals retaining persisting or partial symptoms have substantial needs in adulthood.

  14. Realization of Personalized Services for Intelligent Residential Space based on User Identification Method using Sequential Walking Footprints

    Directory of Open Access Journals (Sweden)

    Jin-Woo Jung

    2005-04-01

    Full Text Available A new human-friendly assistive home environment, Intelligent Sweet Home (ISH, developed at KAIST, Korea for testing advanced concepts for independent living of the elderly/the physically handicapped. The concept of ISH is to consider the home itself as an intelligent robot. ISH always checks the intention or health status of the resident. Therefore, ISH can do actively the most proper services considering the resident's life-style by the detected intention or emergency information. But, when there are more than two residents, ISH cannot consider the residents' characteristics or tastes if ISH cannot identify who he/she is before. To realize a personalized service system in the intelligent residential space like ISH, we deal with a human-friendly user identification method for ubiquitous computing environment, specially focused on dynamic human footprint recognition. And then, we address some case studies of personalized services that have been experienced by Human-friendly Welfare Robot System research center, KAIST.

  15. Effect of genomics-related literacy on non-communicable diseases.

    Science.gov (United States)

    Nakamura, Sho; Narimatsu, Hiroto; Katayama, Kayoko; Sho, Ri; Yoshioka, Takashi; Fukao, Akira; Kayama, Takamasa

    2017-09-01

    Recent progress in genomic research has raised expectations for the development of personalized preventive medicine, although genomics-related literacy of patients will be essential. Thus, enhancing genomics-related literacy is crucial, particularly for individuals with low genomics-related literacy because they might otherwise miss the opportunity to receive personalized preventive care. This should be especially emphasized when a lack of genomics-related literacy is associated with elevated disease risk, because patients could therefore be deprived of the added benefits of preventive interventions; however, whether such an association exists is unclear. Association between genomics-related literacy, calculated as the genomics literacy score (GLS), and the prevalence of non-communicable diseases was assessed using propensity score matching on 4646 participants (males: 1891; 40.7%). Notably, the low-GLS group (score below median) presented a higher risk of hypertension (relative risk (RR) 1.09, 95% confidence interval (CI) 1.03-1.16) and obesity (RR 1.11, 95% CI 1.01-1.22) than the high-GLS group. Our results suggest that a low level of genomics-related literacy could represent a risk factor for hypertension and obesity. Evaluating genomics-related literacy could be used to identify a more appropriate population for health and educational interventions.

  16. Effects and meanings of a person-centred and health-promoting intervention in home care services - a study protocol of a non-randomised controlled trial.

    Science.gov (United States)

    Bölenius, Karin; Lämås, Kristina; Sandman, Per-Olof; Edvardsson, David

    2017-02-16

    The literature indicates that current home care service are largely task oriented with limited focus on the involvement of the older people themselves, and studies show that lack of involvement might reduce older people's quality of life. Person-centred care has been shown to improve the satisfaction with care and quality of life in older people cared for in hospitals and nursing homes, with limited published evidence about the effects and meanings of person-centred interventions in home care services for older people. This study protocol outlines a study aiming to evaluate such effects and meanings of a person-centred and health-promoting intervention in home aged care services. The study will take the form of a non-randomised controlled trial with a before/after approach. It will include 270 older people >65 years receiving home care services, 270 relatives and 65 staff, as well as a matched control group of equal size. All participants will be recruited from a municipality in northern Sweden. The intervention is based on the theoretical concepts of person-centredness and health-promotion, and builds on the four pedagogical phases of: theory apprehension, experimental learning, operationalization, and clinical supervision. Outcome assessments will focus on: a) health and quality of life (primary outcomes), thriving and satisfaction with care for older people; b) caregiver strain, informal caregiving engagement and relatives' satisfaction with care: c) job satisfaction and stress of conscience among care staff (secondary outcomes). Evaluation will be conducted by means of self-reported questionnaires and qualitative research interviews. Person-centred home care services have the potential to improve the recurrently reported sub-standard experiences of home care services, and the results can point the way to establishing a more person-centred and health-promoting model for home care services for older people. NCT02846246 .

  17. Exploring registered Psychiatric Nurses' responses towards Service Users with a diagnosis of borderline personality disorder.

    LENUS (Irish Health Repository)

    McGrath, Bridget

    2012-01-01

    This study explored registered psychiatric nurses\\' (RPNs\\') interactions and level of empathy towards service users with a diagnosis of borderline personality disorder (BPD). A qualitative approach was used, and 17 RPNs were interviewed using a semistructured interview schedule incorporating the "staff-patient interaction response scale" (SPIRS). Four themes emerged following data analysis: "challenging and difficult," "manipulative, destructive and threatening behaviour," "preying on the vulnerable resulting in splitting staff and other service users," and "boundaries and structure." Additionally, low levels of empathy were evident in the majority of participants\\' responses to the SPIRS. The findings provide further insight on nurses\\' empathy responses and views on caring for service users with BPD and further evidence for the need for training and education for nurses in the care of service users diagnosed with BPD.

  18. Access to HIV/AIDS services for disabled persons in Uganda

    DEFF Research Database (Denmark)

    Andersen, Helle Elisabeth

    2006-01-01

    Abstract This project is based on five weeks’ ethnographically inspired fieldwork in May 2006 in the Republic of Uganda. The study started out with the hypothesis that there was some kind of discrimination going on in the interaction between health workers at HIV/AIDS clinics, and person with dis......Abstract This project is based on five weeks’ ethnographically inspired fieldwork in May 2006 in the Republic of Uganda. The study started out with the hypothesis that there was some kind of discrimination going on in the interaction between health workers at HIV/AIDS clinics, and person...... with disabilities (PWDs) coming for HIV/AIDS testing or treatment. However, problems with discriminatory attitudes towards PWDs could not be confirmed from my fieldwork observations at five different HIV/AIDS clinics in Uganda. That observation was confirmed in my interviews with PWDs and health workers. Health...... workers said that PWDs were entitled to the same care and treatment as everybody else. However, I observed that only few PWDs seem to attend those HIV/AIDS services, and the question arose why that is so. Problems with access and confidence (for example lack of sign language interpreters) are often...

  19. Co-occurring mental illness, substance use disorders, and antisocial personality disorder among clients of forensic mental health services.

    Science.gov (United States)

    Ogloff, James R P; Talevski, Diana; Lemphers, Anthea; Wood, Melisa; Simmons, Melanie

    2015-03-01

    Despite the number of studies investigating co-occurring disorders, and more recently, co-occurring disorders and criminal offending, few studies have considered samples from forensic mental health services. The present study was conducted to investigate the relationship between mental illness, substance use disorders, antisocial personality disorder, and offending. The prevalence of co-occurring disorders was investigated in 130 male offenders who had contact with the statewide forensic mental health service in Victoria, Australia. Offense histories and severity of offending were compared among participants diagnosed with a single mental illness (or no mental illness), co-occurring mental illness and substance use, and co-occurring disorders plus antisocial personality disorder. The majority of participants had co-occurring mental and substance use disorders; a significant minority met the criteria for antisocial personality disorder. Participants with co-occurring mental illness and substance use disorders, and those who had an additional diagnosis of antisocial personality disorder, were responsible for more serious and frequent offending than those with mental illness alone. Forensic mental health services must take into account the effect that co-occurring disorders have on clients' functioning and offending. Those who work with people with psychiatric disabilities and co-occurring substance use disorders must ensure that the substance disorders are addressed to help ensure recovery from the mental illness and to reduce the likelihood of offending. (PsycINFO Database Record (c) 2015 APA, all rights reserved).

  20. Integrated Personal Health and Care Services deployment: Experiences in eight European countries

    DEFF Research Database (Denmark)

    Villalba, Elena; Casas, Isabel; Abadie, Fabienne

    2013-01-01

    conditions for mainstreaming these services into care provision. Methods: We conducted a qualitative analysis of 27 Telehealth, Telecare and Integrated Personal Health System projects, implemented across 20 regions in eight European countries. The analysis was based on Suter’s ten key principles...... mechanisms, interoperable information systems, policy commitment, engaged professionals, national investments and funding programmes, and incentives and financing. Conclusion: In those cases which provided evidence of success beyond the pilot stage, we observed a promising trend: awareness and introduction...

  1. Allowing Spouses to Be Paid Personal Care Providers: Spouse Availability and Effects on Medicaid-Funded Service Use and Expenditures

    Science.gov (United States)

    Newcomer, Robert J.; Kang, Taewoon; Doty, Pamela

    2012-01-01

    Purpose of the Study: Medicaid service use and expenditure and quality of care outcomes in California's personal care program known as In-Home Supportive Service (IHSS) are described. Analyses investigated Medicaid expenditures, hospital use, and nursing home stays, comparing recipients who have paid spouse caregivers with those having other…

  2. Relationships between Personal Traits, Emotional Intelligence, Internal Marketing, Service Management, and Customer Orientation in Korean Outpatient Department Nurses.

    Science.gov (United States)

    Kim, Bogyun; Lee, Jia

    2016-03-01

    Current increase and complexity of medical tests and surgical procedures at outpatient department (OPD) require OPD nurses to have customer orientation focusing on various customers' interests and needs. The purpose of this study was to identify the factors associated with customer orientation in nurses working at OPD of hospitals. The study used a descriptive correlational design with cross-sectional survey. The study settings were four general hospitals in Seoul and its metropolitan area. Data were collected from 138 OPD nurses from general hospitals. Study variables were personal traits, emotional intelligence, internal marketing, service management and customer orientation. Factors associated with customer orientation were identified as conscientiousness from personal traits (β = .37, p marketing from environmental characteristics (β = .21, p = .001). Hospital administrators should support OPD nurses to cultivate sincere and sociable personal traits and emotional intelligence, and to consider employees as internal customers to improve patient-oriented services and satisfaction. Copyright © 2015. Published by Elsevier B.V.

  3. [ETHICS, MORALS AND SOCIETY IN PERSONALIZED MEDICINE].

    Science.gov (United States)

    Flugelman, Anath

    2015-09-01

    Following the completion of the human genome project, genomic medicine including personalized medicine, widely based on pharmacogenetics and pharmacogenomics, is rapidly developing. This breakthrough should benefit humankind thanks to tailoring the most appropriate prevention, interventions and therapies to each individual, minimizing adverse side effects, based on inter-personal genetic variety and polymorphism. Yet wide spectrum ethical, legal and social issues carry significant implications regarding individuals, families, society and public health. The main issues concern genomic information and autonomy, justice and equity, resources allocation and solidarity, challenging the traditional role of medicine and dealing with unlimited boundaries of knowledge. Those issues are not new nor exceptional to genomic medicine, yet their wide unlimited scope and implications on many aspects of life renders them crucial. These aspects will be discussed in light of Beauchamp and Childress' four principles: non-maleficence, beneficence, autonomy and justice, and main moral philosophies, Kant's autonomy, Utilitarianism which promotes the common good, and Rawls' Theory of Justice.

  4. Operationalizing the Reciprocal Engagement Model of Genetic Counseling Practice: a Framework for the Scalable Delivery of Genomic Counseling and Testing.

    Science.gov (United States)

    Schmidlen, Tara; Sturm, Amy C; Hovick, Shelly; Scheinfeldt, Laura; Scott Roberts, J; Morr, Lindsey; McElroy, Joseph; Toland, Amanda E; Christman, Michael; O'Daniel, Julianne M; Gordon, Erynn S; Bernhardt, Barbara A; Ormond, Kelly E; Sweet, Kevin

    2018-02-19

    With the advent of widespread genomic testing for diagnostic indications and disease risk assessment, there is increased need to optimize genetic counseling services to support the scalable delivery of precision medicine. Here, we describe how we operationalized the reciprocal engagement model of genetic counseling practice to develop a framework of counseling components and strategies for the delivery of genomic results. This framework was constructed based upon qualitative research with patients receiving genomic counseling following online receipt of potentially actionable complex disease and pharmacogenomics reports. Consultation with a transdisciplinary group of investigators, including practicing genetic counselors, was sought to ensure broad scope and applicability of these strategies for use with any large-scale genomic testing effort. We preserve the provision of pre-test education and informed consent as established in Mendelian/single-gene disease genetic counseling practice. Following receipt of genomic results, patients are afforded the opportunity to tailor the counseling agenda by selecting the specific test results they wish to discuss, specifying questions for discussion, and indicating their preference for counseling modality. The genetic counselor uses these patient preferences to set the genomic counseling session and to personalize result communication and risk reduction recommendations. Tailored visual aids and result summary reports divide areas of risk (genetic variant, family history, lifestyle) for each disease to facilitate discussion of multiple disease risks. Post-counseling, session summary reports are actively routed to both the patient and their physician team to encourage review and follow-up. Given the breadth of genomic information potentially resulting from genomic testing, this framework is put forth as a starting point to meet the need for scalable genetic counseling services in the delivery of precision medicine.

  5. Exploring Registered Psychiatric Nurses' Responses towards Service Users with a Diagnosis of Borderline Personality Disorder

    Directory of Open Access Journals (Sweden)

    Bridget McGrath

    2012-01-01

    Full Text Available This study explored registered psychiatric nurses' (RPNs' interactions and level of empathy towards service users with a diagnosis of borderline personality disorder (BPD. A qualitative approach was used, and 17 RPNs were interviewed using a semistructured interview schedule incorporating the “staff-patient interaction response scale” (SPIRS. Four themes emerged following data analysis: “challenging and difficult,” “manipulative, destructive and threatening behaviour,” “preying on the vulnerable resulting in splitting staff and other service users,” and “boundaries and structure.” Additionally, low levels of empathy were evident in the majority of participants' responses to the SPIRS. The findings provide further insight on nurses' empathy responses and views on caring for service users with BPD and further evidence for the need for training and education for nurses in the care of service users diagnosed with BPD.

  6. Genomic Biomarkers for Personalized Medicine: Development and Validation in Clinical Studies

    Directory of Open Access Journals (Sweden)

    Shigeyuki Matsui

    2013-01-01

    Full Text Available The establishment of high-throughput technologies has brought substantial advances to our understanding of the biology of many diseases at the molecular level and increasing expectations on the development of innovative molecularly targeted treatments and molecular biomarkers or diagnostic tests in the context of clinical studies. In this review article, we position the two critical statistical analyses of high-dimensional genomic data, gene screening and prediction, in the framework of development and validation of genomic biomarkers or signatures, through taking into consideration the possible different strategies for developing genomic signatures. A wide variety of biomarker-based clinical trial designs to assess clinical utility of a biomarker or a new treatment with a companion biomarker are also discussed.

  7. Human genetics and genomics a decade after the release of the draft sequence of the human genome

    Science.gov (United States)

    2011-01-01

    Substantial progress has been made in human genetics and genomics research over the past ten years since the publication of the draft sequence of the human genome in 2001. Findings emanating directly from the Human Genome Project, together with those from follow-on studies, have had an enormous impact on our understanding of the architecture and function of the human genome. Major developments have been made in cataloguing genetic variation, the International HapMap Project, and with respect to advances in genotyping technologies. These developments are vital for the emergence of genome-wide association studies in the investigation of complex diseases and traits. In parallel, the advent of high-throughput sequencing technologies has ushered in the 'personal genome sequencing' era for both normal and cancer genomes, and made possible large-scale genome sequencing studies such as the 1000 Genomes Project and the International Cancer Genome Consortium. The high-throughput sequencing and sequence-capture technologies are also providing new opportunities to study Mendelian disorders through exome sequencing and whole-genome sequencing. This paper reviews these major developments in human genetics and genomics over the past decade. PMID:22155605

  8. Genomics education for decision making : proceedings of the second invitational workshop on genomics education, 2–3 December 2010, Utrecht, The Netherlands

    NARCIS (Netherlands)

    Boerwinkel, D.J.; Waarlo, A.J.

    2011-01-01

    Advances in genomics research and technology generate new personal and societal choices. As science education has the task of preparing students for decision-making on socio-scientific issues, research is needed to develop genomics education aimed at empowering students in the decision-making

  9. Human genome and philosophy: what ethical challenge will human genome studies bring to the medical practices in the 21st century?

    Science.gov (United States)

    Renzong, Q

    2001-12-01

    A human being or person cannot be reduced to a set of human genes, or human genome. Genetic essentialism is wrong, because as a person the entity should have self-conscious and social interaction capacity which is grown in an interpersonal relationship. Genetic determinism is wrong too, the relationship between a gene and a trait is not a linear model of causation, but rather a non-linear one. Human genome is a complexity system and functions in a complexity system of human body and a complexity of systems of natural/social environment. Genetic determinism also caused the issue of how much responsibility an agent should take for her/his action, and how much degrees of freedom will a human being have. Human genome research caused several conceptual issues. Can we call a gene 'good' or 'bad', 'superior' of 'inferior'? Is a boy who is detected to have the gene of Huntington's chorea or Alzheimer disease a patient? What should the term 'eugenics' mean? What do the terms such as 'gene therapy', 'treatment' and 'enhancement' and 'human cloning' mean etc.? The research of human genome and its application caused and will cause ethical issues. Can human genome research and its application be used for eugenics, or only for the treatment and prevention of diseases? Must the principle of informed consent/choice be insisted in human genome research and its application? How to protecting gene privacy and combating the discrimination on the basis of genes? How to promote the quality between persons, harmony between ethnic groups and peace between countries? How to establish a fair, just, equal and equitable relationship between developing and developed countries in regarding to human genome research and its application?

  10. Genomic cloud computing: legal and ethical points to consider.

    Science.gov (United States)

    Dove, Edward S; Joly, Yann; Tassé, Anne-Marie; Knoppers, Bartha M

    2015-10-01

    The biggest challenge in twenty-first century data-intensive genomic science, is developing vast computer infrastructure and advanced software tools to perform comprehensive analyses of genomic data sets for biomedical research and clinical practice. Researchers are increasingly turning to cloud computing both as a solution to integrate data from genomics, systems biology and biomedical data mining and as an approach to analyze data to solve biomedical problems. Although cloud computing provides several benefits such as lower costs and greater efficiency, it also raises legal and ethical issues. In this article, we discuss three key 'points to consider' (data control; data security, confidentiality and transfer; and accountability) based on a preliminary review of several publicly available cloud service providers' Terms of Service. These 'points to consider' should be borne in mind by genomic research organizations when negotiating legal arrangements to store genomic data on a large commercial cloud service provider's servers. Diligent genomic cloud computing means leveraging security standards and evaluation processes as a means to protect data and entails many of the same good practices that researchers should always consider in securing their local infrastructure.

  11. Evaluation of three automated genome annotations for Halorhabdus utahensis.

    Directory of Open Access Journals (Sweden)

    Peter Bakke

    2009-07-01

    Full Text Available Genome annotations are accumulating rapidly and depend heavily on automated annotation systems. Many genome centers offer annotation systems but no one has compared their output in a systematic way to determine accuracy and inherent errors. Errors in the annotations are routinely deposited in databases such as NCBI and used to validate subsequent annotation errors. We submitted the genome sequence of halophilic archaeon Halorhabdus utahensis to be analyzed by three genome annotation services. We have examined the output from each service in a variety of ways in order to compare the methodology and effectiveness of the annotations, as well as to explore the genes, pathways, and physiology of the previously unannotated genome. The annotation services differ considerably in gene calls, features, and ease of use. We had to manually identify the origin of replication and the species-specific consensus ribosome-binding site. Additionally, we conducted laboratory experiments to test H. utahensis growth and enzyme activity. Current annotation practices need to improve in order to more accurately reflect a genome's biological potential. We make specific recommendations that could improve the quality of microbial annotation projects.

  12. Participatory design facilitates Person Centred Nursing in service improvement with older people: a secondary directed content analysis.

    Science.gov (United States)

    Wolstenholme, Daniel; Ross, Helen; Cobb, Mark; Bowen, Simon

    2017-05-01

    To explore, using the example of a project working with older people in an outpatient setting in a large UK NHS Teaching hospital, how the constructs of Person Centred Nursing are reflected in interviews from participants in a Co-design led service improvement project. Person Centred Care and Person Centred Nursing are recognised terms in healthcare. Co-design (sometimes called participatory design) is an approach that seeks to involve all stakeholders in a creative process to deliver the best result, be this a product, technology or in this case a service. Co-design practice shares some of the underpinning philosophy of Person Centred Nursing and potentially has methods to aid in Person Centred Nursing implementation. The research design was a qualitative secondary Directed analysis. Seven interview transcripts from nurses and older people who had participated in a Co-design led improvement project in a large teaching hospital were transcribed and analysed. Two researchers analysed the transcripts for codes derived from McCormack & McCance's Person Centred Nursing Framework. The four most expressed codes were as follows: from the pre-requisites: knowing self; from care processes, engagement, working with patient's beliefs and values and shared Decision-making; and from Expected outcomes, involvement in care. This study describes the Co-design theory and practice that the participants responded to in the interviews and look at how the co-design activity facilitated elements of the Person Centred Nursing framework. This study adds to the rich literature about using emancipatory and transformational approaches to Person Centred Nursing development, and is the first study exploring explicitly the potential contribution of Co-design to this area. Methods from Co-design allow older people to contribute as equals in a practice development project, co-design methods can facilitate nursing staff to engage meaningfully with older participants and develop a shared

  13. TVA nuclear power: Management of the nuclear program through personal services contracts

    International Nuclear Information System (INIS)

    1987-01-01

    Mr. Steven White, a retired admiral, is serving as manager of the TVA Office of Nuclear Power. GAO previously concluded that Mr. White's retention under contractual arrangements constituted the improper use of a personal services contract and represented a circumvention of the statutory ceiling on salary payments to TVA employees. This report finds that Mr. White's rate of pay is within the range of the salaries paid by a sample of nonfederal utilities to their top executives and is over two and a half times the average salary paid to executives who hold positions which appear to have responsibility for managing the utilities' power or nuclear power operations. GAO also found that (1) TVA's Office of Nuclear Power has employed an additional 25 persons since 1986 under arrangements similar to the employing arrangements of Mr. White and (2) TVA's Nuclear Safety Review staff no longer reports directly to the TVA Board of Directors and General Manager. It has relocated from Knoxville, Tennessee to Chattanooga, Tennessee

  14. Annotating individual human genomes.

    Science.gov (United States)

    Torkamani, Ali; Scott-Van Zeeland, Ashley A; Topol, Eric J; Schork, Nicholas J

    2011-10-01

    Advances in DNA sequencing technologies have made it possible to rapidly, accurately and affordably sequence entire individual human genomes. As impressive as this ability seems, however, it will not likely amount to much if one cannot extract meaningful information from individual sequence data. Annotating variations within individual genomes and providing information about their biological or phenotypic impact will thus be crucially important in moving individual sequencing projects forward, especially in the context of the clinical use of sequence information. In this paper we consider the various ways in which one might annotate individual sequence variations and point out limitations in the available methods for doing so. It is arguable that, in the foreseeable future, DNA sequencing of individual genomes will become routine for clinical, research, forensic, and personal purposes. We therefore also consider directions and areas for further research in annotating genomic variants. Copyright © 2011 Elsevier Inc. All rights reserved.

  15. ANNOTATING INDIVIDUAL HUMAN GENOMES*

    Science.gov (United States)

    Torkamani, Ali; Scott-Van Zeeland, Ashley A.; Topol, Eric J.; Schork, Nicholas J.

    2014-01-01

    Advances in DNA sequencing technologies have made it possible to rapidly, accurately and affordably sequence entire individual human genomes. As impressive as this ability seems, however, it will not likely to amount to much if one cannot extract meaningful information from individual sequence data. Annotating variations within individual genomes and providing information about their biological or phenotypic impact will thus be crucially important in moving individual sequencing projects forward, especially in the context of the clinical use of sequence information. In this paper we consider the various ways in which one might annotate individual sequence variations and point out limitations in the available methods for doing so. It is arguable that, in the foreseeable future, DNA sequencing of individual genomes will become routine for clinical, research, forensic, and personal purposes. We therefore also consider directions and areas for further research in annotating genomic variants. PMID:21839162

  16. Predictive genomics: a cancer hallmark network framework for predicting tumor clinical phenotypes using genome sequencing data.

    Science.gov (United States)

    Wang, Edwin; Zaman, Naif; Mcgee, Shauna; Milanese, Jean-Sébastien; Masoudi-Nejad, Ali; O'Connor-McCourt, Maureen

    2015-02-01

    specific patterns and tissue-specificity, which are driven by aging and other cancer-inducing agents. This framework represents the logics of complex cancer biology as a myriad of phenotypic complexities governed by a limited set of underlying organizing principles. It therefore adds to our understanding of tumor evolution and tumorigenesis, and moreover, potential usefulness of predicting tumors' evolutionary paths and clinical phenotypes. Strategies of using this framework in conjunction with genome sequencing data in an attempt to predict personalized drug targets, drug resistance, and metastasis for cancer patients, as well as cancer risks for healthy individuals are discussed. Accurate prediction of cancer clonal evolution and clinical phenotypes will have substantial impact on timely diagnosis, personalized treatment and personalized prevention of cancer. Crown Copyright © 2014. Published by Elsevier Ltd. All rights reserved.

  17. Paediatric International Nursing Study: using person-centred key performance indicators to benchmark children's services.

    Science.gov (United States)

    McCance, Tanya; Wilson, Val; Kornman, Kelly

    2016-07-01

    The aim of the Paediatric International Nursing Study was to explore the utility of key performance indicators in developing person-centred practice across a range of services provided to sick children. The objective addressed in this paper was evaluating the use of these indicators to benchmark services internationally. This study builds on primary research, which produced indicators that were considered novel both in terms of their positive orientation and use in generating data that privileges the patient voice. This study extends this research through wider testing on an international platform within paediatrics. The overall methodological approach was a realistic evaluation used to evaluate the implementation of the key performance indicators, which combined an integrated development and evaluation methodology. The study involved children's wards/hospitals in Australia (six sites across three states) and Europe (seven sites across four countries). Qualitative and quantitative methods were used during the implementation process, however, this paper reports the quantitative data only, which used survey, observations and documentary review. The findings demonstrate the quality of care being delivered to children and their families across different international sites. The benchmarking does, however, highlight some differences between paediatric and general hospitals, and between the different key performance indicators across all the sites. The findings support the use of the key performance indicators as a novel method to benchmark services internationally. Whilst the data collected across 20 paediatric sites suggest services are more similar than different, benchmarking illuminates variations that encourage a critical dialogue about what works and why. The transferability of the key performance indicators and measurement framework across different settings has significant implications for practice. The findings offer an approach to benchmarking and celebrating

  18. Turnaround in an aged persons' mental health service in crisis: a case study of organisational renewal.

    Science.gov (United States)

    Stafrace, Simon; Lilly, Alan

    2008-08-01

    This case study demonstrates how leadership was harnessed to turn around a decline in the performance of an aged persons' mental health service - the Namarra Nursing Home at Caulfield General Medical Centre in Melbourne, Australia. In 2000 the nursing home faced a crisis of public confidence due to failings in the management of quality, clinical risk and human resources within the service. These problems reflected structural and operational shortcomings in the clinical directorate and wider organisation. In this article, we detail the process of turnaround from the perspective of senior executive managers with professional and operational responsibility for the service. This turnaround required attention to local clinical accountability and transformation of the mental health program from a collocated but operationally isolated service to one integrated within the governance structures of the auspicing organisation.

  19. 78 FR 5166 - BE-185: Quarterly Survey of Financial Services Transactions Between U.S. Financial Services...

    Science.gov (United States)

    2013-01-24

    ... BE-185: Quarterly Survey of Financial Services Transactions Between U.S. Financial Services Providers... Services Transactions between U.S. Financial Services Providers and Foreign Persons (BE-185). This.... person who: (a) Had sales of covered financial services to foreign persons that exceeded $20 million for...

  20. Performance testing of personal dosemeters from eleven dosimetry services in Sweden

    International Nuclear Information System (INIS)

    Lund, E.; Kylloenen, J.-E.; Grindborg, J.-E.; Lindborg, L.

    2001-01-01

    The Swedish regulation, SSI FS 98:5, requires that radiological workers of category A use dosemeters from an approved personal dosimetry service. The 11 services operating in Sweden at the moment use five different types of dosemeter. All have been tested for their ability to determine H p (10) and some of them to determine H p (0.07) according to the European Commission report Radiation Protection 73, EUR 14852, of 1994. The five unique systems have been tested regarding the angular and energy dependence of the response of the dosemeters. The test points for the determination of H p (10) are all, except one, within the trumpet curve and for the unique systems it is shown that the uncertainty related to angular response at three different energies is within the required ±40% except for the lowest X ray quality 40 kV. The energy dependence dominates over the directional dependence and the choice of radiation quality for calibration is of great importance for the system performance. (author)

  1. Predictive genomics: A cancer hallmark network framework for predicting tumor clinical phenotypes using genome sequencing data

    OpenAIRE

    Wang, Edwin; Zaman, Naif; Mcgee, Shauna; Milanese, Jean-Sébastien; Masoudi-Nejad, Ali; O'Connor, Maureen

    2014-01-01

    We discuss a cancer hallmark network framework for modelling genome-sequencing data to predict cancer clonal evolution and associated clinical phenotypes. Strategies of using this framework in conjunction with genome sequencing data in an attempt to predict personalized drug targets, drug resistance, and metastasis for a cancer patient, as well as cancer risks for a healthy individual are discussed. Accurate prediction of cancer clonal evolution and clinical phenotypes will have substantial i...

  2. Access to healthcare for disabled persons. How are blind people reached by HIV services?

    Science.gov (United States)

    Saulo, Bryson; Walakira, Eddy; Darj, Elisabeth

    2012-03-01

    Disabled people are overlooked and marginalised globally. There is a lack of information on blind people and HIV-related services and it is unclear how HIV-services target blind people in a sub-Saharan urban setting. To explore how blind people are reached by HIV-services in Kampala, Uganda. A purposeful sample of blind people and seeing healthcare workers were interviewed, and data on their opinions and experiences were collected. The data were analysed by qualitative content analysis, with a focus on manifest content. Three categories emerged from the study, reaching for HIV information and knowledge, lack of services, and experiences of discrimination. General knowledge on HIV prevention/transmission methods was good; however, there was scepticism about condom use. Blind people mainly relied on others for accessing HIV information, and a lack of special services for blind people to be able to test for HIV was expressed. The health service for blind people was considered inadequate, unequal and discriminatory, and harassment by healthcare staff was expressed, but not sexual abuse. Concerns about disclosure of personal medical information were revealed. Access to HIV services and other healthcare related services for blind people is limited and the objectives of the National Strategic Plan for HIV/AIDS 2007-2012 have not been achieved. There is a need for alternative methods for sensitisation and voluntary counselling and testing (VCT) for blind people. Copyright © 2011 Elsevier B.V. All rights reserved.

  3. Alternate service delivery models in cancer genetic counseling: a mini-review

    Directory of Open Access Journals (Sweden)

    Adam Hudson Buchanan

    2016-05-01

    Full Text Available Demand for cancer genetic counseling has grown rapidly in recent years as germline genomic information has become increasingly incorporated into cancer care and the field has entered the public consciousness through high-profile celebrity publications. Increased demand and existing variability in the availability of trained cancer genetics clinicians place a priority on developing and evaluating alternate service delivery models for genetic counseling. This mini-review summarizes the state of science regarding service delivery models such as telephone counseling, telegenetics and group counseling. Research on comparative effectiveness of these models in traditional individual, in-person genetic counseling has been promising for improving access to care in a manner acceptable to patients. Yet, it has not fully evaluated the short- and long-term patient- and system-level outcomes that will help answer the question of whether these models achieve the same beneficial psychosocial and behavioral outcomes as traditional cancer genetic counseling. We propose a research agenda focused on comparative effectiveness of available service delivery models and how to match models to patients and practice settings. Only through this rigorous research can clinicians and systems find the optimal balance of clinical quality, ready and secure access to care, and financial sustainability. Such research will be integral to achieving the promise of genomic medicine in oncology.

  4. Personality dimensions and service failure severity

    African Journals Online (AJOL)

    kirstam

    Dr L. Kruger is a senior lecturer in the Department of Marketing Management ... severity rather than possible individual consumer effects on service failure severity. ... When service failures occur, there is an imbalance in the relationship, because ... service recovery strategies may result in a successful recovery experience ( ...

  5. An XML transfer schema for exchange of genomic and genetic mapping data: implementation as a web service in a Taverna workflow.

    Science.gov (United States)

    Paterson, Trevor; Law, Andy

    2009-08-14

    Genomic analysis, particularly for less well-characterized organisms, is greatly assisted by performing comparative analyses between different types of genome maps and across species boundaries. Various providers publish a plethora of on-line resources collating genome mapping data from a multitude of species. Datasources range in scale and scope from small bespoke resources for particular organisms, through larger web-resources containing data from multiple species, to large-scale bioinformatics resources providing access to data derived from genome projects for model and non-model organisms. The heterogeneity of information held in these resources reflects both the technologies used to generate the data and the target users of each resource. Currently there is no common information exchange standard or protocol to enable access and integration of these disparate resources. Consequently data integration and comparison must be performed in an ad hoc manner. We have developed a simple generic XML schema (GenomicMappingData.xsd - GMD) to allow export and exchange of mapping data in a common lightweight XML document format. This schema represents the various types of data objects commonly described across mapping datasources and provides a mechanism for recording relationships between data objects. The schema is sufficiently generic to allow representation of any map type (for example genetic linkage maps, radiation hybrid maps, sequence maps and physical maps). It also provides mechanisms for recording data provenance and for cross referencing external datasources (including for example ENSEMBL, PubMed and Genbank.). The schema is extensible via the inclusion of additional datatypes, which can be achieved by importing further schemas, e.g. a schema defining relationship types. We have built demonstration web services that export data from our ArkDB database according to the GMD schema, facilitating the integration of data retrieval into Taverna workflows. The data

  6. A Blueprint for Genomic Nursing Science

    Science.gov (United States)

    Calzone, Kathleen A.; Jenkins, Jean; Bakos, Alexis D.; Cashion, Ann; Donaldson, Nancy; Feero, Greg; Feetham, Suzanne; Grady, Patricia A.; Hinshaw, Ada Sue; Knebel, Ann R.; Robinson, Nellie; Ropka, Mary E.; Seibert, Diane; Stevens, Kathleen R.; Tully, Lois A.; Webb, Jo Ann

    2012-01-01

    Purpose This article reports on recommendations arising from an invitational workshop series held at the National Institutes of Health for the purposes of identifying critical genomics problems important to the health of the public that can be addressed through nursing science. The overall purpose of the Genomic Nursing State of the Science Initiative is to establish a nursing research blueprint based on gaps in the evidence and expert evaluation of the current state of the science and through public comment. Organizing Constructs A Genomic Nursing State of the Science Advisory Panel was convened in 2012 to develop the nursing research blueprint. The Advisory Panel, which met via two webinars and two in-person meetings, considered existing evidence from evidence reviews, testimony from key stakeholder groups, presentations from experts in research synthesis, and public comment. Findings The genomic nursing science blueprint arising from the Genomic Nursing State of Science Advisory Panel focuses on biologic plausibility studies as well as interventions likely to improve a variety of outcomes (e.g., clinical, economic, environmental). It also includes all care settings and diverse populations. The focus is on (a) the client, defined as person, family, community, or population; (b) the context, targeting informatics support systems, capacity building, education, and environmental influences; and (c) cross-cutting themes. It was agreed that building capacity to measure the impact of nursing actions on costs, quality, and outcomes of patient care is a strategic and scientific priority if findings are to be synthesized and aggregated to inform practice and policy. Conclusions The genomic nursing science blueprint provides the framework for furthering genomic nursing science to improve health outcomes. This blueprint is an independent recommendation of the Advisory Panel with input from the public and is not a policy statement of the National Institutes of Health or the

  7. Personalized medicine: reality and reality checks.

    Science.gov (United States)

    Leeder, J Steven; Spielberg, Stephen P

    2009-05-01

    The evolving era of pharmacogenomics and personalized medicine is greeted with optimism by many, but this sentiment is not universally shared. The existence of diametrically opposed opinions concerning the potential benefits and obstacles facing the widespread implementation of genomic medicine should stimulate discussion and guide the design of studies to establish the value of interventions targeted at the level of individual patients. One of the more controversial aspects of personalized medicine is whether the anticipated benefits will be realized at an acceptable cost. Recently released analyses suggest that the returns on investment depend on the particular scenario and are different for different stakeholders. On the other hand, cost is only one of the challenges regarding implementation of personalized medicine. Among these are the development of universal standards for managing genomic information in electronic medical records, improvement in the collection and interpretation of clinical phenotype data, and new strategies to educate practitioners and patients/consumers. The reality is that personalized medicine is upon us; open discourse and periodic reality checks will be necessary as we confront it.

  8. Beneficial Effects of Two Types of Personal Health Record Services Connected With Electronic Medical Records Within the Hospital Setting.

    Science.gov (United States)

    Lee, Jisan; Kim, James G Boram; Jin, Meiling; Ahn, Kiwhan; Kim, Byungjun; Kim, Sukwha; Kim, Jeongeun

    2017-11-01

    Healthcare consumers must be able to make decisions based on accurate health information. To assist with this, we designed and developed an integrated system connected with electronic medical records in hospitals to ensure delivery of accurate health information. The system-called the Consumer-centered Open Personal Health Record platform-is composed of two services: a portal for users with any disease and a mobile application for users with cleft lip/palate. To assess the benefits of these services, we used a quasi-experimental, pretest-posttest design, assigning participants to the portal (n = 50) and application (n = 52) groups. Both groups showed significantly increased knowledge, both objective (actual knowledge of health information) and subjective (perceived knowledge of health information), after the intervention. Furthermore, while both groups showed higher information needs satisfaction after the intervention, the application group was significantly more satisfied. Knowledge changes were more affected by participant characteristics in the application group. Our results may be due to the application's provision of specific disease information and a personalized treatment plan based on the participant and other users' data. We recommend that services connected with electronic medical records target specific diseases to provide personalized health management to patients in a hospital setting.

  9. Designing an ICT self-management service: suggestions from persons with type 2 diabetes.

    Science.gov (United States)

    Gardsten, Cecilia; Mörtberg, Christina; Blomqvist, Kerstin

    2017-01-01

    This paper reports the wishes and needs of people with type 2 diabetes (T2DM) for a future information and communication technology (ICT) self-management service to help manage their condition and their everyday life. Diabetes is a chronic disease affecting more and more people and placing increasing demands on health care. The self-management of diabetes includes instrumental and, decision-making skills and skills in managing daily activities, which may be supported by an ICT service. In this study we used a participatory design including two sessions of Future Workshop (FW) as part of a larger research project on the self-management of diabetes. Adults with type 2 diabetes participated in two FW sessions in which their expressed wishes and needs for an ICT service all fell under the broad category of Acceptance of the diagnosis, with three other suggestions; Trust in partnerships, Communication, and Individualized information. The participants' experience of the FW as a democratic process and their appreciation of mutual learning contributed to these results, which are consistent with the aims of person-centred care.

  10. Personality disorders

    DEFF Research Database (Denmark)

    Simonsen, Sebastian; Heinskou, Torben; Sørensen, Per

    2017-01-01

    BACKGROUND: In this naturalistic study, patients with personality disorders (N = 388) treated at Stolpegaard Psychotherapy Center, Mental Health Services, Capital Region of Denmark were allocated to two different kinds of treatment: a standardized treatment package with a preset number of treatment...... characteristics associated with clinicians' allocation of patients to the two different personality disorder services. METHODS: Patient characteristics across eight domains were collected in order to study whether there were systematic differences between patients allocated to the two different treatments....... Patient characteristics included measures of symptom severity, personality pathology, trauma and socio-demographic characteristics. Significance testing and binary regression analysis were applied to identify important predictors. RESULTS: Patient characteristics on fifteen variables differed...

  11. Results of the ninth exercise of intercomparison in services of personal dosimetry in Argentina Republic in the year of 2011

    International Nuclear Information System (INIS)

    Ferrufino, G.A.; Discacciatti, P.A.; Lopez, F.O.

    2013-01-01

    In this paper we present the results of the ninth intercomparison exercise personal dosimetry services, conducted by the Nuclear Regulatory Authority in 2011. The exercise was designed to evaluate the performance of laboratories providing personal dosimetry services in Argentina , for X-rays and gamma radiation fields . This exercise was organized by the Nuclear Regulatory Authority with the Ministry of Health of the Nation and the Regional Reference Laboratory Centre for Dosimetry of the National Atomic Energy Commission . The irradiations were carried out in full accordance with ISO 4037-3 . Participates all private companies in Argentina serving all personal dosimetry laboratories and agencies, provincial and national. Furthermore, the Laboratories from Cuba, Brazil and Uruguay also participate. The performance of a laboratory is considered acceptable if it meets the criteria established in the IRAM- ISO 14146 , which states: 'It is recognized that at most, one-tenth of dosimeters irradiated to exceed the limits'. Of all of the laboratories that participated , 68% reported their results within the acceptance criteria above. The primary objective of this intercomparison exercise is to provide an objective tool to evaluate the ability of personnel dosimetry services. (author)

  12. The Human Gene Mutation Database: building a comprehensive mutation repository for clinical and molecular genetics, diagnostic testing and personalized genomic medicine.

    Science.gov (United States)

    Stenson, Peter D; Mort, Matthew; Ball, Edward V; Shaw, Katy; Phillips, Andrew; Cooper, David N

    2014-01-01

    The Human Gene Mutation Database (HGMD®) is a comprehensive collection of germline mutations in nuclear genes that underlie, or are associated with, human inherited disease. By June 2013, the database contained over 141,000 different lesions detected in over 5,700 different genes, with new mutation entries currently accumulating at a rate exceeding 10,000 per annum. HGMD was originally established in 1996 for the scientific study of mutational mechanisms in human genes. However, it has since acquired a much broader utility as a central unified disease-oriented mutation repository utilized by human molecular geneticists, genome scientists, molecular biologists, clinicians and genetic counsellors as well as by those specializing in biopharmaceuticals, bioinformatics and personalized genomics. The public version of HGMD (http://www.hgmd.org) is freely available to registered users from academic institutions/non-profit organizations whilst the subscription version (HGMD Professional) is available to academic, clinical and commercial users under license via BIOBASE GmbH.

  13. Personalized cancer therapy—leveraging a knowledge base for clinical decision-making

    Science.gov (United States)

    Dumbrava, Ecaterina Ileana; Meric-Bernstam, Funda

    2018-01-01

    Next-generation sequencing (NGS), also known as massively parallel sequencing, is rapidly being incorporated into oncology practice. Interpretation of genomic reports and selecting treatments based on the tumor's genomic analysis becomes more and more complicated for the treating oncologist because of the use of larger panels covering dozens to hundreds of genes and the amount of rapidly emerging clinical/translational data. To help guide personalized treatments in oncology, The Sheikh Khalifa Bin Zayed Al Nahyan Institute for Personalized Cancer Therapy (IPCT) at MD Anderson Cancer Center has developed a knowledge base, available at https://personalizedcancertherapy.org or https://pct.mdanderson.org (PCT). This knowledge base provides information on the function of common genomic alterations and their therapeutic implications. Here, we describe how such genomic information can be used by health-care providers to identify genomically matched therapies. PMID:29212833

  14. Mouse Genome Informatics (MGI)

    Data.gov (United States)

    U.S. Department of Health & Human Services — MGI is the international database resource for the laboratory mouse, providing integrated genetic, genomic, and biological data to facilitate the study of human...

  15. Content-Based Personalization Services Integrating Folksonomies

    Science.gov (United States)

    Musto, Cataldo; Narducci, Fedelucio; Lops, Pasquale; de Gemmis, Marco; Semeraro, Giovanni

    Basic content-based personalization consists in matching up the attributes of a user profile, in which preferences and interests are stored, with the attributes of a content object. The Web 2.0 (r)evolution has changed the game for personalization, from ‘elitary’ Web 1.0, written by few and read by many, to web content generated by everyone (user-generated content - UGC), since the role of people has evolved from passive consumers of information to that of active contributors.

  16. The genome BLASTatlas - a GeneWiz extension for visualization of whole-genome homology

    DEFF Research Database (Denmark)

    Hallin, Peter Fischer; Binnewies, Tim Terence; Ussery, David

    2008-01-01

    ://www.cbs.dtu.dk/ws/BLASTatlas), where programming examples are available in Perl. By providing an interoperable method to carry out whole genome visualization of homology, this service offers bioinformaticians as well as biologists an easy-to-adopt workflow that can be directly called from the programming language of the user, hence......The development of fast and inexpensive methods for sequencing bacterial genomes has led to a wealth of data, often with many genomes being sequenced of the same species or closely related organisms. Thus, there is a need for visualization methods that will allow easy comparison of many sequenced...... genomes to a defined reference strain. The BLASTatlas is one such tool that is useful for mapping and visualizing whole genome homology of genes and proteins within a reference strain compared to other strains or species of one or more prokaryotic organisms. We provide examples of BLASTatlases, including...

  17. 75 FR 35289 - International Services Surveys: BE-180, Benchmark Survey of Financial Services Transactions...

    Science.gov (United States)

    2010-06-22

    ...-AA73 International Services Surveys: BE-180, Benchmark Survey of Financial Services Transactions Between U.S. Financial Services Providers and Foreign Persons AGENCY: Bureau of Economic Analysis... Survey of Financial Services Transactions between U.S. Financial Services Providers and Foreign Persons...

  18. Perancangan Dan Realisasi Sistem Transmisi Data GPS Menggunakan Teknologi SMS (Short Messaging Service Sebagai Aplikasi Sistem Personal Tracking

    Directory of Open Access Journals (Sweden)

    DECY NATALIANA

    2017-06-01

    Full Text Available Abstrak Berprinsip pada pengembangan teknologi dan aplikasi dari sistem penjejakan posisi (tracking, maka dibuatlah sistem personal tracking dengan mentransmisikan data GPS (Global Positioning System dengan menggunakan teknologi SMS (Short Messaging Service pada jaringan GSM (Global System for Mobile Communications sebagai media transmisinya.  Dengan sistem GPS akan diperoleh data garis lintang, serta garis bujur dari GPS receiver.  Data tersebut akan diteruskan oleh mikrokontroler untuk dikirim ke ponsel pengamat melalui komunikasi SMS.  Hasil pengujian menunjukkan bahwa device personal tracking berhasil mengirimkan data berupa IMEI, Tanggal satelit, waktu satelit, koordinat longitude, koordinat latitude, dan jumlah satelit yang berhasil ditangkap oleh device ke ponsel pengamat.  Dari data koordinat tersebut pengamat dapat memantau posisi device personal tracking berada dengan bantuan aplikasi pendukung yaitu Google Maps. Kata kunci: GPS, Personal Tracking, SMS, Google Maps.   Abstract Base on technology and application development of tracking, personal tracking system was made by transmiting GPS (Global Positioning System data using SMS (Short Messaging Service technology with GSM (Global System for Mobile Communications network as transmitter media.  BY GPS system, we can get datas such as latitude and longitude of GPS receiver.  Those datas will be processed by microcontroller to be sent from GSM/GPRS module to user cellular phone through SMS communication.  The test result showed that the device can be sending datas such as IMEI, UTC date, UTC time, longitude coordinate, latitude coordinate, and number sattelite which detected by device to user’s phonecell.  From those coordinate, user can be monitoring the device’s position with the Google Maps application. Keywords: GPS, Personal Tracking, SMS, Google Maps.

  19. The rare and undiagnosed diseases diagnostic service - application of massively parallel sequencing in a state-wide clinical service.

    Science.gov (United States)

    Baynam, Gareth; Pachter, Nicholas; McKenzie, Fiona; Townshend, Sharon; Slee, Jennie; Kiraly-Borri, Cathy; Vasudevan, Anand; Hawkins, Anne; Broley, Stephanie; Schofield, Lyn; Verhoef, Hedwig; Walker, Caroline E; Molster, Caron; Blackwell, Jenefer M; Jamieson, Sarra; Tang, Dave; Lassmann, Timo; Mina, Kym; Beilby, John; Davis, Mark; Laing, Nigel; Murphy, Lesley; Weeramanthri, Tarun; Dawkins, Hugh; Goldblatt, Jack

    2016-06-11

    The Rare and Undiagnosed Diseases Diagnostic Service (RUDDS) refers to a genomic diagnostic platform operating within the Western Australian Government clinical services delivered through Genetic Services of Western Australia (GSWA). GSWA has provided a state-wide service for clinical genetic care for 28 years and it serves a population of 2.5 million people across a geographical area of 2.5milion Km(2). Within this context, GSWA has established a clinically integrated genomic diagnostic platform in partnership with other public health system managers and service providers, including but not limited to the Office of Population Health Genomics, Diagnostic Genomics (PathWest Laboratories) and with executive level support from the Department of Health. Herein we describe report presents the components of this service that are most relevant to the heterogeneity of paediatric clinical genetic care. Briefly the platform : i) offers multiple options including non-genetic testing; monogenic and genomic (targeted in silico filtered and whole exome) analysis; and matchmaking; ii) is delivered in a patient-centric manner that is resonant with the patient journey, it has multiple points for entry, exit and re-entry to allow people access to information they can use, when they want to receive it; iii) is synchronous with precision phenotyping methods; iv) captures new knowledge, including multiple expert review; v) is integrated with current translational genomic research activities and best practice; and vi) is designed for flexibility for interactive generation of, and integration with, clinical research for diagnostics, community engagement, policy and models of care. The RUDDS has been established as part of routine clinical genetic services and is thus sustainable, equitably managed and seeks to translate new knowledge into efficient diagnostics and improved health for the whole community.

  20. Identifying Personal Goals of Patients With Long Term Condition: A Service Design Thinking Approach.

    Science.gov (United States)

    Lee, Eunji; Gammon, Deede

    2017-01-01

    Care for patients with long term conditions is often characterized as fragmented and ineffective, and fails to engage the resources of patients and their families in the care process. Information and communication technology can potentially help bridge the gap between patients' lives and resources and services provided by professionals. However, there is little attention on how to identify and incorporate the patients' individual needs, values, preferences and care goals into the digitally driven care settings. We conducted a case study with healthcare professionals and patients participated applying a service design thinking approach. The participants could elaborate some personal goals of patients with long term condition which can potentially be incorporated in digitally driven care plans using examples from their own experiences.

  1. Perspectives on Clinical Informatics: Integrating Large-Scale Clinical, Genomic, and Health Information for Clinical Care

    Directory of Open Access Journals (Sweden)

    In Young Choi

    2013-12-01

    Full Text Available The advances in electronic medical records (EMRs and bioinformatics (BI represent two significant trends in healthcare. The widespread adoption of EMR systems and the completion of the Human Genome Project developed the technologies for data acquisition, analysis, and visualization in two different domains. The massive amount of data from both clinical and biology domains is expected to provide personalized, preventive, and predictive healthcare services in the near future. The integrated use of EMR and BI data needs to consider four key informatics areas: data modeling, analytics, standardization, and privacy. Bioclinical data warehouses integrating heterogeneous patient-related clinical or omics data should be considered. The representative standardization effort by the Clinical Bioinformatics Ontology (CBO aims to provide uniquely identified concepts to include molecular pathology terminologies. Since individual genome data are easily used to predict current and future health status, different safeguards to ensure confidentiality should be considered. In this paper, we focused on the informatics aspects of integrating the EMR community and BI community by identifying opportunities, challenges, and approaches to provide the best possible care service for our patients and the population.

  2. CyanoBase: the cyanobacteria genome database update 2010

    OpenAIRE

    Nakao, Mitsuteru; Okamoto, Shinobu; Kohara, Mitsuyo; Fujishiro, Tsunakazu; Fujisawa, Takatomo; Sato, Shusei; Tabata, Satoshi; Kaneko, Takakazu; Nakamura, Yasukazu

    2009-01-01

    CyanoBase (http://genome.kazusa.or.jp/cyanobase) is the genome database for cyanobacteria, which are model organisms for photosynthesis. The database houses cyanobacteria species information, complete genome sequences, genome-scale experiment data, gene information, gene annotations and mutant information. In this version, we updated these datasets and improved the navigation and the visual display of the data views. In addition, a web service API now enables users to retrieve the data in var...

  3. State of human genome at low-doses ecological influences

    International Nuclear Information System (INIS)

    Mel'nov, S.B.; Rytik, P.G.; Kruchinskij, N.G.; Kovalev, V.A.; Palamar, L.A.; Senyuk, O.F.

    2005-01-01

    The results of analysis of the state of genome (amounts of single strand breaks in DNA) of the persons exposed to influence of complex 'Chernobyl factor' in remote terms after a failure on ChNPP are resulted. Findings allowed to expose the increase of level of single strand breaks in DNA at the chronically irradiated persons mainly carry adaptive character and probably can be related to instability of genome. Thus at organism level growth of mutational pressure and strengthening of instability of cellular genome is related to the change of spectrum of biological characteristics, in particular individual reaction of somatic cells of victims on additional mutagens influences. The indicated changes can testify to existence of potential risk of remote genetic consequences of long-term irradiation influence in low doses

  4. Balancing Benefits and Risks of Immortal Data: Participants' Views of Open Consent in the Personal Genome Project.

    Science.gov (United States)

    Zarate, Oscar A; Brody, Julia Green; Brown, Phil; Ramirez-Andreotta, Mónica D; Perovich, Laura; Matz, Jacob

    2016-01-01

    An individual's health, genetic, or environmental-exposure data, placed in an online repository, creates a valuable shared resource that can accelerate biomedical research and even open opportunities for crowd-sourcing discoveries by members of the public. But these data become "immortalized" in ways that may create lasting risk as well as benefit. Once shared on the Internet, the data are difficult or impossible to redact, and identities may be revealed by a process called data linkage, in which online data sets are matched to each other. Reidentification (re-ID), the process of associating an individual's name with data that were considered deidentified, poses risks such as insurance or employment discrimination, social stigma, and breach of the promises often made in informed-consent documents. At the same time, re-ID poses risks to researchers and indeed to the future of science, should re-ID end up undermining the trust and participation of potential research participants. The ethical challenges of online data sharing are heightened as so-called big data becomes an increasingly important research tool and driver of new research structures. Big data is shifting research to include large numbers of researchers and institutions as well as large numbers of participants providing diverse types of data, so the participants' consent relationship is no longer with a person or even a research institution. In addition, consent is further transformed because big data analysis often begins with descriptive inquiry and generation of a hypothesis, and the research questions cannot be clearly defined at the outset and may be unforeseeable over the long term. In this article, we consider how expanded data sharing poses new challenges, illustrated by genomics and the transition to new models of consent. We draw on the experiences of participants in an open data platform-the Personal Genome Project-to allow study participants to contribute their voices to inform ethical consent

  5. Access to health services by lesbian, gay, bisexual, and transgender persons: systematic literature review.

    Science.gov (United States)

    Alencar Albuquerque, Grayce; de Lima Garcia, Cintia; da Silva Quirino, Glauberto; Alves, Maria Juscinaide Henrique; Belém, Jameson Moreira; dos Santos Figueiredo, Francisco Winter; da Silva Paiva, Laércio; do Nascimento, Vânia Barbosa; da Silva Maciel, Érika; Valenti, Vitor Engrácia; de Abreu, Luiz Carlos; Adami, Fernando

    2016-01-14

    The relationship between users and health services is considered essential to strengthen the quality of care. However, the Lesbian, Gay, Bisexual, and Transgender population suffer from prejudice and discrimination in access and use of these services. This study aimed to identify the difficulties associated with homosexuality in access and utilization of health services. A systematic review conducted using PubMed, Cochrane, SciELO, and LILACS, considering the period from 2004 to 2014. The studies were evaluated according to predefined inclusion and exclusion criterias. Were included manuscripts written in English or Portuguese, articles examining the Lesbian, Gay, Bisexual, and Transgender population's access to health services and original articles with full text available online. The electronic databases search resulted in 667 studies, of which 14 met all inclusion criteria. Quantitative articles were predominant, showing the country of United States of America to be the largest producer of research on the topic. The studies reveal that the homosexual population have difficulties of access to health services as a result of heteronormative attitudes imposed by health professionals. The discriminatory attendance implies in human rights violations in access to health services. The non-heterosexual orientation was a determinant factor in the difficulties of accessing health care. A lot must still be achieved to ensure access to health services for sexual minorities, through the adoption of holistic and welcoming attitudes. The results of this study highlight the need for larger discussions about the theme, through new research and debates, with the aim of enhancing professionals and services for the health care of Lesbian, Gay, Bisexual, and Transgender Persons.

  6. Sociodemographic Differences in Clients Preferring Video-Call Over In-person Interview: A Pilot Study of HIV Tele-partner Services.

    Science.gov (United States)

    Udeagu, Chi-Chi N; Shah, Sharmila; Toussaint, Magalieta M; Pickett, Leonard

    2017-11-01

    The New York City Department of Health Disease Intervention Specialists (DIS) routinely contact newly HIV-diagnosed persons via telephone calls and in-person meetings to conduct partner services (PS) interviews in order to elicit the names and contact information of the HIV-exposed partners for notification and HIV-testing, and to assist clients with linkage to care. From October 2013 to December 2015, we offered PS interviews conducted via video-call alongside voice-call and in-person modes in a selected geographic area of NYC. PS interviews were conducted according to the clients' preferred mode (in-person, voice- or video-call) and location (health care facility, clients' residences, or other NYC locations). At the conclusion of the PS interviews, DIS elicited responses from persons interviewed via video-call on their perception, satisfaction and personal experiences using video-call for public health and personal purposes. Acceptance and satisfaction with PS interviews via video-call were high among clients aged interviews for specific populations.

  7. Anonymizing patient genomic data for public sharing association studies.

    Science.gov (United States)

    Fernandez-Lozano, Carlos; Lopez-Campos, Guillermo; Seoane, Jose A; Lopez-Alonso, Victoria; Dorado, Julian; Martín-Sanchez, Fernando; Pazos, Alejandro

    2013-01-01

    The development of personalized medicine is tightly linked with the correct exploitation of molecular data, especially those associated with the genome sequence along with these use of genomic data there is an increasing demand to share these data for research purposes. Transition of clinical data to research is based in the anonymization of these data so the patient cannot be identified, the use of genomic data poses a great challenge because its nature of identifying data. In this work we have analyzed current methods for genome anonymization and propose a one way encryption method that may enable the process of genomic data sharing accessing only to certain regions of genomes for research purposes.

  8. Risk behavior and access to HIV/AIDS prevention services in a community sample of homeless persons entering permanent supportive housing.

    Science.gov (United States)

    Wenzel, Suzanne L; Rhoades, Harmony; Harris, Taylor; Winetrobe, Hailey; Rice, Eric; Henwood, Ben

    2017-05-01

    Homeless persons suffer disproportionately high rates of HIV infection, and moving into permanent supportive housing (PSH) can provide a stable base from which to access needed prevention services. However, little is known about HIV risk or prevention behavior during this critical time of transition. The current study investigated STI and HIV risk and prevention behavior and recent use of prevention and treatment services (i.e., education, testing, medication) among homeless persons preparing to move into PSH. Data come from interviews with 421 homeless adults before they moved into PSH. Thirty-seven percent of the respondents were sexually active; of those, 75.7% reported unprotected sex. Nearly two-thirds (64%) reported past year HIV testing and 40% reported testing for another STI. Fewer than one-third (31%) of respondents reported receiving posttest counseling at their last HIV test. HIV seropositivity was self-reported by 10%. Among those persons who were HIV-positive, 57.1% reported less than 100% antiretroviral (ARV) adherence. Among HIV-negative respondents, less than 1% had been prescribed preexposure prophylaxis (PrEP). Less than half (46.4%) of the sample reported any HIV prevention education in the past year. This population of homeless adults about to move into PSH report high rates of HIV risk behavior, but low rates of HIV prevention education and very little PrEP utilization. Further, low rates of ARV adherence among HIV-positive respondents indicate significant risk for HIV transmission and acquisition. Entering PSH is a period of transition for homeless persons when integrated care is critically important to ensure positive health outcomes, but these data suggest that PrEP and other HIV prevention services are poorly accessed among this population. As such, multipronged services that integrate PrEP and other HIV prevention services are needed to prevent transmission and acquisition of HIV in this high-risk, vulnerable population and ensure the

  9. GenPlay Multi-Genome, a tool to compare and analyze multiple human genomes in a graphical interface.

    Science.gov (United States)

    Lajugie, Julien; Fourel, Nicolas; Bouhassira, Eric E

    2015-01-01

    Parallel visualization of multiple individual human genomes is a complex endeavor that is rapidly gaining importance with the increasing number of personal, phased and cancer genomes that are being generated. It requires the display of variants such as SNPs, indels and structural variants that are unique to specific genomes and the introduction of multiple overlapping gaps in the reference sequence. Here, we describe GenPlay Multi-Genome, an application specifically written to visualize and analyze multiple human genomes in parallel. GenPlay Multi-Genome is ideally suited for the comparison of allele-specific expression and functional genomic data obtained from multiple phased genomes in a graphical interface with access to multiple-track operation. It also allows the analysis of data that have been aligned to custom genomes rather than to a standard reference and can be used as a variant calling format file browser and as a tool to compare different genome assembly, such as hg19 and hg38. GenPlay is available under the GNU public license (GPL-3) from http://genplay.einstein.yu.edu. The source code is available at https://github.com/JulienLajugie/GenPlay. © The Author 2014. Published by Oxford University Press. All rights reserved. For Permissions, please e-mail: journals.permissions@oup.com.

  10. Evaluation of Three Automated Genome Annotations for Halorhabdus utahensis

    DEFF Research Database (Denmark)

    Bakke, Peter; Carney, Nick; DeLoache, Will

    2009-01-01

    in databases such as NCBI and used to validate subsequent annotation errors. We submitted the genome sequence of halophilic archaeon Halorhabdus utahensis to be analyzed by three genome annotation services. We have examined the output from each service in a variety of ways in order to compare the methodology...

  11. Activity of public employment services in the Poznan agglomeration for the benefit of the disabled persons

    Directory of Open Access Journals (Sweden)

    Robert Talaga

    2009-01-01

    Full Text Available In 2002-2007 public employment services enlarged the range of service offers within the frames of active policy of labour market for handicapped persons living in the city of Poznań and the poviat (commune. The attempt was successful despite permanent and not very high expenditure on solving the handicapped persons’ problems. Simultaneously there was an observable increase of expenditure on the whole active policy of Poznań agglomeration labour market. Owing to the law changes a lot of positive progress was achieved which introduced professional activation of handicapped people in the forms inaccessible to this group of citizens so far. It should be mentioned here that it came about also thanks to undertakings cofinanced with European funds, alongside with the assistance of private and non-governmental institutions. A constant ratio of the handicapped persons’ employment as well as slightly changeable number of handicapped persons registered at Poznań District Work Office, prove that the present situation does not develop in handicapped youth the necessary skills to actively search work, and it strengthens attitudes of professional passivity.

  12. How Do Persons with Mild Acquired Cognitive Impairment Use Information and Communication Technology and E-Services? Results from a Swedish National Survey.

    Science.gov (United States)

    Eghdam, Aboozar; Bartfai, Aniko; Oldenburg, Christian; Koch, Sabine

    2016-01-01

    Mild acquired cognitive impairment is a term used to describe a sub-group of persons with mild cognitive impairment who are expected to reach a stable cognitive level over time. One tactic that can be considered for further developing treatment for this group is the use of information and communication technology and e-services. The purpose of this study was to investigate the current use of regular e-services and social media by this group as well as their user experiences. Data were collected through a self-administered survey and analyzed using quantitative methods. The questionnaire included questions regarding the participants' use of and experience with e-services. Categorization of e-services was based on and cross-validated with the International Classification of Functioning, Disability and Health (ICF). To estimate participants' degree and type of impairment, the Cognitive Failure Questionnaire (CFQ), measuring cognitive difficulties in performing everyday tasks, was added. In total, 282 persons with acquired brain injury participated in the survey. The participants' CFQ scores showed that they were suffering from mild to moderate cognitive impairments, most often acquired from traumatic brain injuries (40%). The majority (89%) used e-services in different categories whereof the most popular and essential ones were communication services (59%) and banking (39%) services. Participants with higher total CFQ scores (>58) used more e-services in most of the categories compared to participants with lower scores (services to be trustworthy and supportive in different contexts. The usage of electronic devices decreased by age with the exception of electronic tablets that were used by older participants approximately as frequently as by other age groups. Although persons with mild to moderate acquired brain injury used various e-services that are not customized for them, very few participants used self-care health services (apps) and readers (e-readers). Further

  13. CyanoBase: the cyanobacteria genome database update 2010.

    Science.gov (United States)

    Nakao, Mitsuteru; Okamoto, Shinobu; Kohara, Mitsuyo; Fujishiro, Tsunakazu; Fujisawa, Takatomo; Sato, Shusei; Tabata, Satoshi; Kaneko, Takakazu; Nakamura, Yasukazu

    2010-01-01

    CyanoBase (http://genome.kazusa.or.jp/cyanobase) is the genome database for cyanobacteria, which are model organisms for photosynthesis. The database houses cyanobacteria species information, complete genome sequences, genome-scale experiment data, gene information, gene annotations and mutant information. In this version, we updated these datasets and improved the navigation and the visual display of the data views. In addition, a web service API now enables users to retrieve the data in various formats with other tools, seamlessly.

  14. Ethical, Legal, and Social Implications of Personalized Genomic Medicine Research: Current Literature and Suggestions for the Future.

    Science.gov (United States)

    Callier, Shawneequa L; Abudu, Rachel; Mehlman, Maxwell J; Singer, Mendel E; Neuhauser, Duncan; Caga-Anan, Charlisse; Wiesner, Georgia L

    2016-11-01

    This review identifies the prominent topics in the literature pertaining to the ethical, legal, and social issues (ELSI) raised by research investigating personalized genomic medicine (PGM). The abstracts of 953 articles extracted from scholarly databases and published during a 5-year period (2008-2012) were reviewed. A total of 299 articles met our research criteria and were organized thematically to assess the representation of ELSI issues for stakeholders, health specialties, journals, and empirical studies. ELSI analyses were published in both scientific and ethics journals. Investigational research comprised 45% of the literature reviewed (135 articles) and the remaining 55% (164 articles) comprised normative analyses. Traditional ELSI concerns dominated the discourse including discussions about disclosure of research results. In fact, there was a dramatic increase in the number of articles focused on the disclosure of research results and incidental findings to research participants. Few papers focused on particular disorders, the use of racial categories in research, international communities, or special populations (e.g., adolescents, elderly patients, or ethnic groups). Considering that strategies in personalized medicine increasingly target individuals' unique health conditions, environments, and ancestries, further analysis is needed on how ELSI scholarship can better serve the increasingly global, interdisciplinary, and diverse PGM research community. © 2016 John Wiley & Sons Ltd.

  15. "Harnessing genomics to improve health in India" – an executive course to support genomics policy

    Directory of Open Access Journals (Sweden)

    Acharya Tara

    2004-05-01

    ensure broad-based input into policy setting; ensure equitable access of poor to genomics products and services; deliver knowledge, products and services for public health. A key outcome of the course was the internet-based opinion leaders' network – the Indian Genome Policy Forum – a multi-stakeholder forum to foster further discussion on policy. Conclusion We expect that the process that has led to this network will serve as a model to establish similar Science and Technology policy networks on regional levels and eventually on a global level.

  16. Inpatient satisfaction and usage patterns of personalized smart bedside station system for patient-centered service at a tertiary university hospital.

    Science.gov (United States)

    Ryu, Borim; Kim, Seok; Lee, Kee-Hyuck; Hwang, Hee; Yoo, Sooyoung

    2016-11-01

    Bedside stations, also known as bedside terminals, are in place to enhance the quality and experience of a hospital's healthcare service delivery. The purpose of this study was to identify information needs and overall satisfaction with the personalized patient bedside system, called Smart Bedside Station (SBS) system, embedded in a tertiary general university hospital. End-user responses on the satisfaction survey and system usage logs of the SBS system were collected and analyzed. For the user opinion survey, 156 nurses and 1914 patients, their family members, or caregivers participated during the evaluation period of 2013 to 2014 in this study. All working nurses in the SBS-installed ward were answered the paper-based evaluation, for complete enumeration survey. Inpatients were voluntary participated to deliver the online questionnaire on the SBS menu. We also explored system log data including page calls and usage time from December 2013 to 2015. Regarding the relationship of overall satisfaction of the SBS with patient's characteristics, patient's education status and degree of familiarity with the smart device were statistically significant. From the analysis of system logs, Personalized My Menu(28.0%) was the most frequently used menu item (except for TV and Internet entertainment service use of 62.7%),it provides individual health information, such as laboratory test results, hospital fee check, message logs, daily medication information, and meal information. Next frequently used menus were information support(4.9%) which deliver hospital guide and health information and convenience service ordering(4.4%) such as meal order, bed sheet change. Satisfaction survey results and log data results show that the personalized service enhances the user satisfaction during hospital admission. Our post-implementation experience and subsequent assessment of SBS system is capable of providing insights into improving the hospital information system and service contents

  17. Choice of Personal Assistance Services Providers by Medicare Beneficiaries Using a Consumer-Directed Benefit: Rural-Urban Differences

    Science.gov (United States)

    Meng, Hongdao; Friedman, Bruce; Wamsley, Brenda R.; Van Nostrand, Joan F.; Eggert, Gerald M.

    2010-01-01

    Purpose: To examine the impact of an experimental consumer-choice voucher benefit on the selection of independent and agency personal assistance services (PAS) providers among rural and urban Medicare beneficiaries with disabilities. Methods: The Medicare Primary and Consumer-Directed Care Demonstration enrolled 1,605 Medicare beneficiaries in 19…

  18. Personalized E-Learning System Using Item Response Theory

    Science.gov (United States)

    Chih-Ming, Chen; Lee, Hahn-Ming; Chen, Ya-Hui

    2005-01-01

    Personalized service is important on the Internet, especially in Web-based learning. Generally, most personalized systems consider learner preferences, interests, and browsing behaviors in providing personalized services. However, learner ability usually is neglected as an important factor in implementing personalization mechanisms. Besides, too…

  19. Realization of personal telemedicine in the interface point of emergency services and preventive care

    Science.gov (United States)

    Golovner, Michal

    2002-08-01

    SHL was founded in 1987, based in Tel Aviv Israel. SHL is a leading provider of personal telemedicine systems and services. SHL operates a medical call center in Israel that offers remote monitoring services to approx.65000 subscribers. Currently SHL is implementing successful Israeli business model in international markets and has established a number of strategic relationships with leading consumer and healthcare companies in Europe, including Philips Electronics and Nestor Healthcare. As of June 2002, Raytel Medical, a US based company, became a wholly- owned subsidiary of SHL. Core products are FDA approved, carry the CE mark and have a long established reputation in the medical community and a successful track record. SHL offers subscribers and their physicians, Internet access to selected medical data. SHL is publicly traded on the SWX market, Switzerland).

  20. De novo assembly of a haplotype-resolved human genome.

    Science.gov (United States)

    Cao, Hongzhi; Wu, Honglong; Luo, Ruibang; Huang, Shujia; Sun, Yuhui; Tong, Xin; Xie, Yinlong; Liu, Binghang; Yang, Hailong; Zheng, Hancheng; Li, Jian; Li, Bo; Wang, Yu; Yang, Fang; Sun, Peng; Liu, Siyang; Gao, Peng; Huang, Haodong; Sun, Jing; Chen, Dan; He, Guangzhu; Huang, Weihua; Huang, Zheng; Li, Yue; Tellier, Laurent C A M; Liu, Xiao; Feng, Qiang; Xu, Xun; Zhang, Xiuqing; Bolund, Lars; Krogh, Anders; Kristiansen, Karsten; Drmanac, Radoje; Drmanac, Snezana; Nielsen, Rasmus; Li, Songgang; Wang, Jian; Yang, Huanming; Li, Yingrui; Wong, Gane Ka-Shu; Wang, Jun

    2015-06-01

    The human genome is diploid, and knowledge of the variants on each chromosome is important for the interpretation of genomic information. Here we report the assembly of a haplotype-resolved diploid genome without using a reference genome. Our pipeline relies on fosmid pooling together with whole-genome shotgun strategies, based solely on next-generation sequencing and hierarchical assembly methods. We applied our sequencing method to the genome of an Asian individual and generated a 5.15-Gb assembled genome with a haplotype N50 of 484 kb. Our analysis identified previously undetected indels and 7.49 Mb of novel coding sequences that could not be aligned to the human reference genome, which include at least six predicted genes. This haplotype-resolved genome represents the most complete de novo human genome assembly to date. Application of our approach to identify individual haplotype differences should aid in translating genotypes to phenotypes for the development of personalized medicine.

  1. Personal Information Leaks with Automatic Login in Mobile Social Network Services

    Directory of Open Access Journals (Sweden)

    Jongwon Choi

    2015-06-01

    Full Text Available To log in to a mobile social network service (SNS server, users must enter their ID and password to get through the authentication process. At that time, if the user sets up the automatic login option on the app, a sort of security token is created on the server based on the user’s ID and password. This security token is called a credential. Because such credentials are convenient for users, they are utilized by most mobile SNS apps. However, the current state of credential management for the majority of Android SNS apps is very weak. This paper demonstrates the possibility of a credential cloning attack. Such attacks occur when an attacker extracts the credential from the victim’s smart device and inserts it into their own smart device. Then, without knowing the victim’s ID and password, the attacker can access the victim’s account. This type of attack gives access to various pieces of personal information without authorization. Thus, in this paper, we analyze the vulnerabilities of the main Android-based SNS apps to credential cloning attacks, and examine the potential leakage of personal information that may result. We then introduce effective countermeasures to resolve these problems.

  2. Relationship among science teacher personality characteristics and degree of teacher classroom implementation after in-service workshop

    Science.gov (United States)

    Sechler, Phares Lochiel Coleman

    State departments of public instruction require that teachers periodically update their licenses throughout their teaching careers. Various professional development events such as in-service workshops, university offerings, and special innovative programs provide opportunities for novice and experienced teachers to grow professionally. The "Team Science" workshop was designed from models supported by research that described guidelines for successful workshop strategies. In evaluating the workshop, the question was asked "Why did not all teachers implement the ideas from the workshop in their science classrooms?" This study investigates the possible relationship between teacher personality characteristics and implementation of technology innovations. Team Science was an extensive workshop program planned to develop science teachers' expertise in using computer and video technology to teach in physical science, chemistry, and physics classrooms in rural school in North Carolina. Upon evaluating the four-year effort, it was found that the 23 participants implemented the technological strategies at various levels. At the higher end of the range of technology use, some teachers exhibited complete integration of the computers and interfacing devices into both the laboratory work and the classroom inquiry. At the lower end of the range, some teachers used the technology very little. The resulting question emerged from the data collected: Do specific teacher personality characteristics (independent variables) correlate with the degree of implementation (dependent variable) of the innovative ideas and tools used in the teacher's science classroom after the in-service workshop? To determine if there were any significant personality traits, each teacher was given five personality tests. The tests were Hunt's Conceptual Development Test, the Paragraph Completion Test; James Rest's Defining Issues Test; Simmons Personal Survey, an emotional tendency test; the Myers-Briggs Type

  3. An XML transfer schema for exchange of genomic and genetic mapping data: implementation as a web service in a Taverna workflow

    Directory of Open Access Journals (Sweden)

    Law Andy

    2009-08-01

    Full Text Available Abstract Background Genomic analysis, particularly for less well-characterized organisms, is greatly assisted by performing comparative analyses between different types of genome maps and across species boundaries. Various providers publish a plethora of on-line resources collating genome mapping data from a multitude of species. Datasources range in scale and scope from small bespoke resources for particular organisms, through larger web-resources containing data from multiple species, to large-scale bioinformatics resources providing access to data derived from genome projects for model and non-model organisms. The heterogeneity of information held in these resources reflects both the technologies used to generate the data and the target users of each resource. Currently there is no common information exchange standard or protocol to enable access and integration of these disparate resources. Consequently data integration and comparison must be performed in an ad hoc manner. Results We have developed a simple generic XML schema (GenomicMappingData.xsd – GMD to allow export and exchange of mapping data in a common lightweight XML document format. This schema represents the various types of data objects commonly described across mapping datasources and provides a mechanism for recording relationships between data objects. The schema is sufficiently generic to allow representation of any map type (for example genetic linkage maps, radiation hybrid maps, sequence maps and physical maps. It also provides mechanisms for recording data provenance and for cross referencing external datasources (including for example ENSEMBL, PubMed and Genbank.. The schema is extensible via the inclusion of additional datatypes, which can be achieved by importing further schemas, e.g. a schema defining relationship types. We have built demonstration web services that export data from our ArkDB database according to the GMD schema, facilitating the integration of

  4. Dementia service centres in Austria: A comprehensive support and early detection model for persons with dementia and their caregivers - theoretical foundations and model description.

    Science.gov (United States)

    Auer, Stefanie R; Span, Edith; Reisberg, Barry

    2015-07-01

    Despite the highly developed social services in Austria, the County of Upper Austria, one of the nine counties of Austria had only very limited specialized services for persons with dementia and their caregivers in 2001. Support groups existed in which the desire for more specialized services was voiced. In response to this situation, funding was received to develop a new structure for early disease detection and long term support for both the person with dementia and their caregivers. This article describes the development of the model of the Dementia Service Centres (DSCs) and the successes and difficulties encountered in the process of implementing the model in six different rural regions of Upper Austria. The DSC was described in the First Austrian Dementia Report as one of the potential service models for the future. © The Author(s) 2013.

  5. How pre-service teachers' personality traits, self-efficacy, and discipline strategies contribute to the teacher-student relationship.

    Science.gov (United States)

    de Jong, Romi; Mainhard, Tim; van Tartwijk, Jan; Veldman, Ietje; Verloop, Nico; Wubbels, Theo

    2014-06-01

    Although the teacher-student relationship is a well-documented phenomenon, few attempts have been made to identify its predictors. Research has mainly focused on in-service teachers, less is known about characteristics of pre-service teachers in relation to the teacher-student relationship. The purpose of this study was to identify the predictors of pre-service secondary teachers' relationships with their students. It was hypothesized that friendliness and extraversion, self-efficacy in classroom management and in student engagement, and various discipline strategies would contribute to the teacher-student relationship in terms of influence and affiliation. A total of 120 pre-service teachers in teacher education programmes participated. Data on pre-service teachers' background (e.g., gender and age), personality traits, and self-efficacy were gathered with teacher questionnaires; data on teachers' discipline strategies and the teacher-student relationship with student questionnaires. The two personality traits and self-efficacy appeared not to be related to the teacher-student relationship in terms of affiliation or influence. However, significant relationships were found between the different discipline strategies and the teacher-student relationship in terms of influence and affiliation. There were differential effects for gender on the relationship between discipline strategies on the one hand and influence and affiliation on the other. This study provides relevant new insights into the research fields of classroom management and interpersonal relationships in education. It contributes to our understanding of discipline strategies by fine tuning an existing instrument and revealing interesting connections with the teacher-student relationship. Specific gender effects on this connection are discussed, as are implications for practice. © 2013 The British Psychological Society.

  6. [A web information system for enhancing management and improving special care services provided to dependent persons].

    Science.gov (United States)

    Alvarez-Bermejo, J A; Hernández-Capel, D M; Belmonte-Ureña, L J; Roca-Piera, J

    2009-01-01

    Ensuring the quality of services provided in centres where dependent persons are seen by specialist services, by improving and enhancing how information -salary, control of tasks, patients' records, etc.- is shared between staff and carers. A web information system has been developed and experimentally deployed to accomplish this. The accuracy of the system was evaluated by assessing how confident the employees were with it rather than relying on statistical data. It was experimentally deployed since January 2009 in Asociación de Personas con Discapacidad "El Saliente" that manages several day centres in Almeria, for dependent persons over 65 years old, particularly those affected by Alzheimer' disease. Incidence data was collected during the experimental period. A total of 84% of the employees thought that the system helped to manage documents, administrative duties, etc., and 92.4% said they could attend to really important tasks because the system was responsible for alerting them of every task, such as medication timetables, checking all patients were present (to prevent an Alzheimer affected person leaving the centre) etc. During this period the incidences reported were reduced by about a 30%, although data is still partially representative. As the life expectancy of the population gets longer, these centres will increase. Providing systems such as the one presented here would be of great help for administrative duties (sensitive data protection...) as well as ensuring high quality care and attention.

  7. Personal factors and personality characteristics as predictors of ...

    African Journals Online (AJOL)

    The study set to investigate personal factors and personality characteristics as Predictors of customers satisfaction with health care services. The study utilized Ex-Post Facto design. A total number of 100 participants took part in the study which were made up of 57 (57%) males and 48 (48%) females, with a mean age of ...

  8. Big data or bust: realizing the microbial genomics revolution.

    Science.gov (United States)

    Raza, Sobia; Luheshi, Leila

    2016-02-01

    Pathogen genomics has the potential to transform the clinical and public health management of infectious diseases through improved diagnosis, detection and tracking of antimicrobial resistance and outbreak control. However, the wide-ranging benefits of this technology can only fully be realized through the timely collation, integration and sharing of genomic and clinical/epidemiological metadata by all those involved in the delivery of genomic-informed services. As part of our review on bringing pathogen genomics into 'health-service' practice, we undertook extensive stakeholder consultation to examine the factors integral to achieving effective data sharing and integration. Infrastructure tailored to the needs of clinical users, as well as practical support and policies to facilitate the timely and responsible sharing of data with relevant health authorities and beyond, are all essential. We propose a tiered data sharing and integration model to maximize the immediate and longer term utility of microbial genomics in healthcare. Realizing this model at the scale and sophistication necessary to support national and international infection management services is not uncomplicated. Yet the establishment of a clear data strategy is paramount if failures in containing disease spread due to inadequate knowledge sharing are to be averted, and substantial progress made in tackling the dangers posed by infectious diseases.

  9. A new scale to measure family members' perception of community health care services for persons with Huntington disease.

    Science.gov (United States)

    Sousa, Valmi D; Williams, Janet K; Barnette, Jack J; Reed, David A

    2010-06-01

    RATIONALE, AIMS, AND OBJECTIVES: Huntington disease (HD) is a progressive genetic brain disease leading to disruptive cognitive, behavioural and physical impairments. Persons with the condition and their caregivers need appropriate and accessible health care services to help them manage the disease adequately. The purpose of this study was to evaluate the psychometric properties of a new scale that measures family members' perception of community health care services (CHCS) for persons with HD. A methodological design was used to examine the initial reliability and dimensionality of the CHCS scale among 245 family members of persons with a diagnosis of HD. Data analysis consisted of computing Cronbach's alpha coefficients, calculating the 95% confidence interval for alpha and performing item-analysis and exploratory factor analysis. Reliability of the scale based on Cronbach's alpha was 0.83. Factor analysis using principal component analysis and varimax rotation suggested that three interpretable factors underlie the scale. Factor 1, HD knowledge, had alpha = 0.82, eigenvalue of 4.67 and explained 33.42% of the variance; factor 2, HD community resources, had alpha = 0.62, eigenvalue of 1.68 and explained 12.02% of the variance; factor 3, individualized HD management, had alpha = 0.77, eigenvalue of 1.45 and explained 10.39% of the variance. Findings from this study provide evidence of both construct validity and internal consistency reliability of the CHCS scale. Further psychometric testing of the scale in other samples of family caregivers of persons with HD is warranted.

  10. A Balancing Act-How Mental Health Professionals Experience Being Personal in Their Relationships with Service Users.

    Science.gov (United States)

    Ljungberg, Amanda; Denhov, Anne; Topor, Alain

    2017-07-01

    Although being personal in relationships with service users is commonly described as an important aspect of the way that professionals help people with severe mental problems, this has also been described to bring with it a need to keep a distance and set boundaries. This study aims to explore how professionals working in psychiatric care view being personal in their relationships with users. Qualitative interviews with 21 professionals working in three outpatient psychiatric units, analyzed through thematic analysis. Being personal in their relationships with users was described as something that participants regarded to be helpful, but that also entails risks. Participants described how they balanced being personal by keeping a distance and maintaining boundaries in their relationships based on their "experience-based knowledge" to counter these risks. While these boundaries seemed to play an important part in the way that they act and behave, they were not seen as fixed, but rather as flexible and dynamic. Boundaries could sometimes be transgressed to the benefit of users. Being personal was viewed as something that may be helpful to users, but that also entails risks. Although boundaries may be a useful concept for use in balancing these risks, they should be understood as something complex and flexible.

  11. Un/Paid Labor: Medicaid Home and Community Based Services Waivers That Pay Family as Personal Care Providers

    Science.gov (United States)

    Friedman, Carli; Rizzolo, Mary C.

    2016-01-01

    The United States long-term services and supports system is built on largely unpaid (informal) labor. There are a number of benefits to allowing family caregivers to serve as paid personal care providers including better health and satisfaction outcomes, expanded workforces, and cost effectiveness. The purpose of this study was to examine how…

  12. Governance in genomics: a conceptual challenge for public health genomics law

    Directory of Open Access Journals (Sweden)

    Tobias Schulte in den Bäumen

    2006-12-01

    Full Text Available Increasing levels of genomic knowledge has led to awareness that new governance issues need to be taken into consideration. While some countries have created new statutory laws in the last 10 years, science supports the idea that genomic data should be treated like other medical data. In this article we discuss the three core models of governance in medical law on a conceptual level. The three models, the Medical, Public Health and Fundamental Rights Model stress different values, or in legal terms serve different principles. The Medical Model stands for expert knowledge and the standardisation of quality in healthcare. The Public Health Model fosters a social point of view as it advocates distribution justice in healthcare and an awareness of healthcare as a broader concept. The Fundamental Rights Model focuses on individual rights such as the right to privacy and autonomy. We argue that none of the models can be used in a purist fashion as governance in genomics should enable society and individuals to protect individual rights, to strive for a distribution justice and to ensure the quality of genomic services in one coherent process. Thus, genomic governance in genomics requires procedural law and a set of applicable principles. The principle which underlies all three models is the principle of medical beneficence. Therefore genomic governance should refer to it as a key principle when conflicting rights of individuals or communities need to be balanced.

  13. Private and Efficient Query Processing on Outsourced Genomic Databases.

    Science.gov (United States)

    Ghasemi, Reza; Al Aziz, Md Momin; Mohammed, Noman; Dehkordi, Massoud Hadian; Jiang, Xiaoqian

    2017-09-01

    Applications of genomic studies are spreading rapidly in many domains of science and technology such as healthcare, biomedical research, direct-to-consumer services, and legal and forensic. However, there are a number of obstacles that make it hard to access and process a big genomic database for these applications. First, sequencing genomic sequence is a time consuming and expensive process. Second, it requires large-scale computation and storage systems to process genomic sequences. Third, genomic databases are often owned by different organizations, and thus, not available for public usage. Cloud computing paradigm can be leveraged to facilitate the creation and sharing of big genomic databases for these applications. Genomic data owners can outsource their databases in a centralized cloud server to ease the access of their databases. However, data owners are reluctant to adopt this model, as it requires outsourcing the data to an untrusted cloud service provider that may cause data breaches. In this paper, we propose a privacy-preserving model for outsourcing genomic data to a cloud. The proposed model enables query processing while providing privacy protection of genomic databases. Privacy of the individuals is guaranteed by permuting and adding fake genomic records in the database. These techniques allow cloud to evaluate count and top-k queries securely and efficiently. Experimental results demonstrate that a count and a top-k query over 40 Single Nucleotide Polymorphisms (SNPs) in a database of 20 000 records takes around 100 and 150 s, respectively.

  14. First national intercomparison of personal dosimetry for dosimetry service providers in paec

    International Nuclear Information System (INIS)

    Akhter, J.; Ahmed, S.S.

    2006-12-01

    Health Physics Division, PINSTECH, has conducted an intercomparison exercise for PAEC organizations which are responsible for providing personal dosimetry services for the assessment of occupational doses of radiation workers. The exercise was on voluntary basis and it was designed to harmonize the procedure of individual dose monitoring techniques in terms of new ICRP operational quantities of personal dose equivalent Hp (10) for photons. Cobalt-60 and Cesium-137 protection level sources were used for irradiation. The dosimeters were exposed to radiation in the range of 0.46 to 24.20 mSv. Irradiations were performed in Secondary Standard Dosimetry Laboratory (SSDL) at HPD, PINSTECH according to IAEA/WHO standards. The performance of the participating laboratories was judged by trumpet curve that provides the acceptable limits on overall accuracy for occupational dose monitoring at 95% confidence level according to international standards. The response of measured dose/standard true dose (Hm/Ht lies in the range of 0.66 to 1.11 for 60CO and 0.84 to 1.17 for 137CS. This report describes the procedure and results of the intercomparison exercise. (author)

  15. [Mental health service utilization among borderline personality disorder patients inpatient].

    Science.gov (United States)

    Cailhol, L; Thalamas, C; Garrido, C; Birmes, P; Lapeyre-Mestre, M

    2015-04-01

    Borderline personality disorder (BPD) is characterized by a pervasive pattern of instability and impulsivity. Several North American prospective studies support the high level of mental health care utilization in this population. There is little data in other systems of health organization, such as France. Furthermore, little is known on the variables associated with the mental health service utilization among BPD patients. The main objective was to compare the utilization of mental health care among BPD patients, to the general population and patients with another personality disorder (PD) and to describe the demographic and clinical factors associated with the group of patients who use the most health care. A multi-center (5 public and private centers), epidemiological study. Data were collected prospectively (database of an insurance fund covering 80% of the population) and viewed, retrospectively. We used the data collected during the five years previously to the inclusion. Inclusion criteria were age (18-60 years) and membership in the health insurance fund targeted. Patients on legal protection, forced hospitalization, with a chronic psychotic disorder, manic, mental retardation, or not reading French were excluded. First, four groups were composed: BPD, other PD, control groups for PD and other PD. The first two groups were recruited from a screening of inpatients including a self-administered questionnaire (Personality Disorder Questionnaire 4+). Assessment by a psychologist including the Structured Interview for DSM-IV Personality Disorders (SIDP-IV) was given straight to those who had a score above 28. This questionnaire allowed us to distinguish one group of subjects with BPD and a group with other PD (without BPD). Clinical evaluation included Axis I (MINI), Axis II (SIDP-IV), psychopathological features (YSQ-I, DSQ-40), demographic variables and therapeutic alliance (Haq-II). Matched controls (age, sex) composed the 3rd and 4th group (BPD control and

  16. Brute-Force Approach for Mass Spectrometry-Based Variant Peptide Identification in Proteogenomics without Personalized Genomic Data

    Science.gov (United States)

    Ivanov, Mark V.; Lobas, Anna A.; Levitsky, Lev I.; Moshkovskii, Sergei A.; Gorshkov, Mikhail V.

    2018-02-01

    In a proteogenomic approach based on tandem mass spectrometry analysis of proteolytic peptide mixtures, customized exome or RNA-seq databases are employed for identifying protein sequence variants. However, the problem of variant peptide identification without personalized genomic data is important for a variety of applications. Following the recent proposal by Chick et al. (Nat. Biotechnol. 33, 743-749, 2015) on the feasibility of such variant peptide search, we evaluated two available approaches based on the previously suggested "open" search and the "brute-force" strategy. To improve the efficiency of these approaches, we propose an algorithm for exclusion of false variant identifications from the search results involving analysis of modifications mimicking single amino acid substitutions. Also, we propose a de novo based scoring scheme for assessment of identified point mutations. In the scheme, the search engine analyzes y-type fragment ions in MS/MS spectra to confirm the location of the mutation in the variant peptide sequence.

  17. Personal dosimetry and information platforms

    International Nuclear Information System (INIS)

    Sanchez Hidalgo, M.; Galan Montenegro, P.; Bodineau Gil, C.; Hernandez Rodriguez, R.; Jimenez Nartin, A.; Cano Sanchez, J. J.

    2011-01-01

    One question often raised by the hospital personnel dosimetry is the high incidence in the no monthly turnover of dosimeters, which is currently a high number of administrative dose assignments. The high number of workers with personal dosimetry and in many cases, the dispersion of workplaces makes it impossible to personalized management. To make a more direct and personal, and transmit information quickly and with guaranteed reception, has developed and implemented a system of personalized dosimetric information through messaging Short Message Service (SMS) and access to the history of dosimetric dosimetric and management through web space Service Hospital Radio physics.

  18. Developing integrated health and social care services for older persons in Europe.

    Science.gov (United States)

    Leichsenring, Kai

    2004-01-01

    This paper is to distribute first results of the EU Fifth Framework Project 'Providing integrated health and social care for older persons-issues, problems and solutions' (PROCARE-http://www.euro.centre.org/procare/). The project's first phase was to identify different approaches to integration as well as structural, organisational, economic and social-cultural factors and actors that constitute integrated and sustainable care systems. It also served to retrieve a number of experiences, model ways of working and demonstration projects in the participating countries which are currently being analysed in order to learn from success-or failure-and to develop policy recommendations for the local, national and European level. The paper draws on existing definitions of integrated care in various countries and by various scholars. Given the context of an international comparative study it tries to avoid providing a single, ready-made definition but underlines the role of social care as part and parcel of this type of integrated care in the participating countries. The paper is based on national reports from researchers representing ten organisations (university institutes, consultancy firms, research institutes, the public and the NGO sector) from 9 European countries: Austria, Denmark, Finland, France, Germany, Greece, Italy, the Netherlands, and the UK. Literature reviews made intensive use of grey literature and evaluation studies in the context of at least five model ways of working in each country. As a result of the cross-national overview an attempt to classify different approaches and definitions is made and indicators of relative importance of the different instruments used in integrating health and social care services are provided. The cross-national overview shows that issues concerning co-ordination and integration of services are high on the agenda in most countries. Depending on the state of service development, various approaches and instruments can be

  19. Personal care services provided to children with special health care needs (CSHCN) and their subsequent use of physician services.

    Science.gov (United States)

    Miller, Thomas R; Elliott, Timothy R; McMaughan, Darcy M; Patnaik, Ashweeta; Naiser, Emily; Dyer, James A; Fournier, Constance J; Hawes, Catherine; Phillips, Charles D

    2013-10-01

    Medicaid Personal Care Services (PCS) help families meet children's needs for assistance with functional tasks. However, PCS may have other effects on a child's well-being, but research has not yet established the existence of such effects. To investigate the relationship between the number of PCS hours a child receives with subsequent visits to physicians for evaluation and management (E&M) services. Assessment data for 2058 CSHCN receiving PCS were collected in 2008 and 2009. Assessment data were matched with Medicaid claims data for the period of 1 year after the assessment. Zero-inflated negative binomial and generalized linear multivariate regression models were used in the analyses. These models included patient demographics, health status, household resources, and use of other medical services. For every 10 additional PCS hours authorized for a child, the odds of having an E&M physician visit in the next year were reduced by 25%. However, the number of PCS hours did not have a significant effect on the number of visits by those children who did have a subsequent E&M visit. A variety of demographic and health status measures also affect physician use. Medicaid PCS for CSHCN may be associated with reduced physician usage because of benefits realized by continuity of care, the early identification of potential health threats, or family and patient education. PCS services may contribute to a child's well-being by providing continuous relationships with the care team that promote good chronic disease management, education, and support for the family. Copyright © 2013 Elsevier Inc. All rights reserved.

  20. Have they done what they should? Moral reasoning in the context of translating older persons' everyday problems into eligible needs for home modification services.

    Science.gov (United States)

    Johansson, Karin

    2013-09-01

    This study explores how moral reasoning is expressed in matching health care with the problems older persons experience in their everyday life. Narrative data were collected from older persons who had applied for home modification services and from professionals involved in these services in Sweden. A theoretical framework, based on theories on the anthropology of morals, was applied to explore how the participants made conclusions about "what should be done." Moral reasoning was found to be guided by ideologies related to the historical and cultural context of the Swedish welfare state. Different interpretations of how these values should be expressed in specific situations led to different conclusions about what should be done. The study highlights the importance of understanding how values are enacted rather than what values different social agents have in order to understand how health care services can be designed and provided to support older persons' everyday life. © 2013 by the American Anthropological Association.

  1. Proposal of a service delivery integration index of home care for older persons: application in several European cities.

    NARCIS (Netherlands)

    Henrard, J.C.; Ankri, J.; Frijters, D.; Carpenter, I.; Topinkova, E.; Garms-Homolova, V.; Finne-Soveri, H.; Wergeland Sorbye, L.; Jonsson, P.V.; Ljunggren, G.; Schroll, M.; Wagner, C.; Bernabei, R.

    2006-01-01

    PURPOSE: To propose an integration index of home care delivery to older persons, to study its validity and to apply it to home care services of European cities. THEORY: Home care delivery integration was based on two dimensions referring to process-centred integration and organisational structure

  2. Unmet Needs: Habilitation, Rehabilitation, and Independent Living Services for Persons Who Are Blind or Have Low Vision

    Science.gov (United States)

    Crudden, Adele; Sansing, William

    2011-01-01

    A statewide assessment of stakeholders' needs was conducted for a state agency providing habilitation, rehabilitation, and independent living services to persons of all ages who are visually impaired (that is, those who are are blind or have low vision). This needs assessment was designed to acquire an accurate and thorough picture of the agency's…

  3. 77 FR 2304 - National Human Genome Research Institute; Notice of Meeting

    Science.gov (United States)

    2012-01-17

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome....S.C. 281(d)(4)), notice is hereby given that the National Human Genome Research Institute (NHGRI... meeting of the National Advisory Council for Human Genome Research. Background materials on the proposed...

  4. 75 FR 2147 - National Human Genome Research Institute; Notice of Meetings

    Science.gov (United States)

    2010-01-14

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... Council for Human Genome Research. The meetings will be open to the public as indicated below, with... Extramural Research, National Human Genome Research Institute, 5635 Fishers Lane, Suite 4076, MSC 9305...

  5. Pharmacogenomics and Nanotechnology Toward Advancing Personalized Medicine

    Science.gov (United States)

    Vizirianakis, Ioannis S.; Amanatiadou, Elsa P.

    The target of personalized medicine to achieve major benefits for all patients in terms of diagnosis and drug delivery can be facilitated by creating a sincere multidisciplinary information-based infrastructure in health care. To this end, nanotechnology, pharmacogenomics, and informatics can advance the utility of personalized medicine, enable clinical translation of genomic knowledge, empower healthcare environment, and finally improve clinical outcomes.

  6. Meeting psychosocial needs for persons with dementia in home care services - a qualitative study of different perceptions and practices among health care providers.

    Science.gov (United States)

    Hansen, Anette; Hauge, Solveig; Bergland, Ådel

    2017-09-11

    The majority of persons with dementia are home-dwelling. To enable these persons to stay in their own homes as long as possible, a holistic, individual and flexible care is recommended. Despite a requirement for meeting psychological, social and physical needs, home care services seem to focus on patients' physical needs. Accordingly, the aim of this study was to explore how the psychosocial needs of home-dwelling, older persons with dementia were perceived, emphasized and met by home care services. A descriptive, qualitative approach was used. Data were collected through semi-structured focus group interviews with 24 health care providers in home care services from four municipalities. Data were analysed using systematic text condensation. This study showed major differences in how health care providers perceived the psychosocial needs of older home-dwelling persons with dementia and how they perceived their responsibilities for meeting those psychosocial needs. The differences in the health care providers' perceptions seemed to significantly influence the provided care. Three co-existing logics of care were identified: the physical need-oriented logic, the renouncement logic and the integrated logic. The differences in how health care providers perceived the psychosocial needs of persons with dementia and their responsibilities for meeting those needs, influenced how the psychosocial needs were met. These differences indicates a need for a clarification of how psychosocial needs should be conceptualized and who should be responsible for meeting these needs. Further, increased competence and increased consciousness of psychosocial needs and how those needs can be met, are essential for delivering high-quality holistic care that enables persons with dementia to live in their own home for as long as possible.

  7. 78 FR 107 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2013-01-02

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... evaluate grant applications. Place: National Human Genome Research Institute, 3rd Floor Conference Room....D., Scientific Review Officer, Scientific Review Branch, National Human Genome Research Institute...

  8. 78 FR 21382 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2013-04-10

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... applications. Place: National Human Genome Research Institute, Suite 4076, 5635 Fisher's Lane, Bethesda, MD..., National Human Genome Research Institute, National Institutes of Health, 5635 Fishers Lane, Suite 4075...

  9. 77 FR 8268 - National Human Genome Research Institute; Notice of Closed Meetings

    Science.gov (United States)

    2012-02-14

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... applications. Place: National Human Genome Research Institute, 5635 Fisher's Lane, Room 4076, Rockville, MD..., CIDR, National Human Genome Research Institute, National Institutes of Health, 5635 Fishers Lane, Suite...

  10. 75 FR 19984 - National Human Genome Research Institute; Notice of Closed Meetings

    Science.gov (United States)

    2010-04-16

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome..., National Human Genome Research Institute, National Institutes of Health, 5635 Fishers Lane, Suite 4075... Nakamura, PhD, Scientific Review Officer, Scientific Review Branch, National Human Genome Research...

  11. 76 FR 28056 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2011-05-13

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... Counselors, National Human Genome Research Institute. The meeting will be closed to the public as indicated... National Human Genome Research Institute, including consideration of personnel qualifications and...

  12. 78 FR 70063 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2013-11-22

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... Counselors, National Human Genome Research Institute. The meeting will be closed to the public as indicated... NATIONAL HUMAN GENOME RESEARCH INSTITUTE, including consideration of personnel qualifications and...

  13. 75 FR 13558 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2010-03-22

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... Counselors, National Human Genome Research Institute. The meeting will be closed to the public as indicated... National Human Genome Research Institute, including consideration of personnel qualifications and...

  14. 75 FR 53703 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2010-09-01

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome..., Scientific Review Branch, National Human Genome Research Institute, National Institutes of Health, 5635.... (Catalogue of Federal Domestic Assistance Program Nos. 93.172, Human Genome Research, National Institutes of...

  15. A critique of race-based and genomic medicine.

    Science.gov (United States)

    Meier, Robert J

    2012-03-01

    Now that a composite human genome has been sequenced (HGP), research has accelerated to discover precise genetic bases of several chronic health issues, particularly in the realms of cancer and cardiovascular disease. It is anticipated that in the future it will be possible and cost effective to regularly sequence individual genomes, and thereby produce a DNA profile that potentially can be used to assess the health risks for each person with respect to certain genetically predisposed conditions. Coupled with that enormous diagnostic power, it will then depend upon equally rapid research efforts to develop personalized courses of treatment, including that of pharmaceutical therapy. Initial treatment attempts have been made to match drug efficacy and safety to individuals of assigned or self-identified groups according to their genetic ancestry or presumed race. A prime example is that of BiDil, which was the first drug approved by the US FDA for the explicit treatment of heart patients of African American ancestry. This race-based approach to medicine has been met with justifiable criticism, notably on ethical grounds that have long plagued historical applications and misuses of human race classification, and also on questionable science. This paper will assess race-based medical research and practice in light of a more thorough understanding of human genetic variability. Additional concerns will be expressed with regard to the rapidly developing area of pharmacogenomics, promoted to be the future of personalized medicine. Genomic epidemiology will be discussed with several examples of on-going research that hopefully will provide a solid scientific grounding for personalized medicine to build upon.

  16. The Front Line of Genomic Translation

    International Nuclear Information System (INIS)

    O'Neill, C. S.; McBride, C. M.; Koehly, L. M.; Bryan, A. D.; Wideroff, L.

    2012-01-01

    Cancer prevention, detection, and treatment represent the front line of genomic translation. Increasingly, new genomic knowledge is being used to inform personalized cancer prevention recommendations and treatment [1-3]. Genomic applications proposed and realized span the full cancer continuum, from cancer prevention and early detection vis a vis genomic risk profiles to motivate behavioral risk reduction and adherence [4] to screening and prophylactic prevention recommendations for high-risk families [5-7], to enhancing cancer survivorship by using genomic tumor profiles to inform treatment decisions and targeted cancer therapies [8, 9]. Yet the utility for many of these applications is as yet unclear and will be influenced heavily by the public’s, patients’, and health care providers’ responses and in numerous other factors, such as health care delivery models [3]. The contributors to this special issue consider various target groups’ responses and contextual factors. To reflect the cancer continuum, the special issue is divided into three broad, overlapping themes-primary prevention, high risk families and family communication and clinical translation.

  17. FORESEE: Fully Outsourced secuRe gEnome Study basEd on homomorphic Encryption.

    Science.gov (United States)

    Zhang, Yuchen; Dai, Wenrui; Jiang, Xiaoqian; Xiong, Hongkai; Wang, Shuang

    2015-01-01

    The increasing availability of genome data motivates massive research studies in personalized treatment and precision medicine. Public cloud services provide a flexible way to mitigate the storage and computation burden in conducting genome-wide association studies (GWAS). However, data privacy has been widely concerned when sharing the sensitive information in a cloud environment. We presented a novel framework (FORESEE: Fully Outsourced secuRe gEnome Study basEd on homomorphic Encryption) to fully outsource GWAS (i.e., chi-square statistic computation) using homomorphic encryption. The proposed framework enables secure divisions over encrypted data. We introduced two division protocols (i.e., secure errorless division and secure approximation division) with a trade-off between complexity and accuracy in computing chi-square statistics. The proposed framework was evaluated for the task of chi-square statistic computation with two case-control datasets from the 2015 iDASH genome privacy protection challenge. Experimental results show that the performance of FORESEE can be significantly improved through algorithmic optimization and parallel computation. Remarkably, the secure approximation division provides significant performance gain, but without missing any significance SNPs in the chi-square association test using the aforementioned datasets. Unlike many existing HME based studies, in which final results need to be computed by the data owner due to the lack of the secure division operation, the proposed FORESEE framework support complete outsourcing to the cloud and output the final encrypted chi-square statistics.

  18. Dimensions of normal and abnormal personality: Elucidating DSM-IV personality disorder symptoms in adolescents

    NARCIS (Netherlands)

    Tromp, N.B.; Koot, H.M.

    2010-01-01

    The present study aimed to elucidate dimensions of normal and abnormal personality underlying DSM-IV personality disorder (PD) symptoms in 168 adolescents referred to mental health services. Dimensions derived from the Big Five of normal personality and from Livesley's (2006) conceptualization of

  19. Psychosocial work characteristics of personal care and service occupations: a process for developing meaningful measures for a multiethnic workforce.

    Science.gov (United States)

    Hoppe, Annekatrin; Heaney, Catherine A; Fujishiro, Kaori; Gong, Fang; Baron, Sherry

    2015-01-01

    Despite their rapid increase in number, workers in personal care and service occupations are underrepresented in research on psychosocial work characteristics and occupational health. Some of the research challenges stem from the high proportion of immigrants in these occupations. Language barriers, low literacy, and cultural differences as well as their nontraditional work setting (i.e., providing service for one person in his/her home) make generic questionnaire measures inadequate for capturing salient aspects of personal care and service work. This study presents strategies for (1) identifying psychosocial work characteristics of home care workers that may affect their occupational safety and health and (2) creating survey measures that overcome barriers posed by language, low literacy, and cultural differences. We pursued these aims in four phases: (Phase 1) Six focus groups to identify the psychosocial work characteristics affecting the home care workers' occupational safety and health; (Phase 2) Selection of questionnaire items (i.e., questions or statements to assess the target construct) and first round of cognitive interviews (n = 30) to refine the items in an iterative process; (Phase 3) Item revision and second round of cognitive interviews (n = 11); (Phase 4) Quantitative pilot test to ensure the scales' reliability and validity across three language groups (English, Spanish, and Chinese; total n = 404). Analysis of the data from each phase informed the nature of subsequent phases. This iterative process ensured that survey measures not only met the reliability and validity criteria across groups, but were also meaningful to home care workers. This complex process is necessary when conducting research with nontraditional and multilingual worker populations.

  20. 76 FR 19780 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2011-04-08

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... E. Day, PhD, Scientific Review Officer, CIDR, National Human Genome Research Institute, National... . (Catalogue of Federal Domestic Assistance Program No. 93.172, Human Genome Research, National Institutes of...

  1. 77 FR 74676 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2012-12-17

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... Human Genome Research Institute, National Institutes of Health, 5635 Fishers Lane, Suite 4075, Bethesda.... 93.172, Human Genome Research, National Institutes of Health, HHS) Dated: December 11, 2012. David...

  2. 76 FR 10909 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2011-02-28

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome..., National Human Genome Research Institute, National Institutes of Health, 5635 Fishers Lane, Suite 4076, MSC..., Human Genome Research, National Institutes of Health, HHS). Dated: February 18, 2011. Jennifer S. Spaeth...

  3. 77 FR 35991 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2012-06-15

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... Human Genome Research Institute, National Institutes of Health, 5635 Fishers Lane, Suite 4075, Bethesda.... 93.172, Human Genome Research, National Institutes of Health, HHS) Dated: June 8, 2012. Jennifer S...

  4. 75 FR 8977 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2010-02-26

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome..., National Human Genome Research Institute, National Institutes of Health, 5635 Fishers Lane, Suite 4076, MSC..., Human Genome Research, National Institutes of Health, HHS) Dated: February 18, 2010. Jennifer Spaeth...

  5. 75 FR 67380 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2010-11-02

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... Review Branch, National Human Genome Research Institute, National Institutes of Health, 5635 Fishers Lane.... (Catalogue of Federal Domestic Assistance Program Nos. 93.172, Human Genome Research, National Institutes of...

  6. Genomics and privacy: implications of the new reality of closed data for the field.

    Science.gov (United States)

    Greenbaum, Dov; Sboner, Andrea; Mu, Xinmeng Jasmine; Gerstein, Mark

    2011-12-01

    Open source and open data have been driving forces in bioinformatics in the past. However, privacy concerns may soon change the landscape, limiting future access to important data sets, including personal genomics data. Here we survey this situation in some detail, describing, in particular, how the large scale of the data from personal genomic sequencing makes it especially hard to share data, exacerbating the privacy problem. We also go over various aspects of genomic privacy: first, there is basic identifiability of subjects having their genome sequenced. However, even for individuals who have consented to be identified, there is the prospect of very detailed future characterization of their genotype, which, unanticipated at the time of their consent, may be more personal and invasive than the release of their medical records. We go over various computational strategies for dealing with the issue of genomic privacy. One can "slice" and reformat datasets to allow them to be partially shared while securing the most private variants. This is particularly applicable to functional genomics information, which can be largely processed without variant information. For handling the most private data there are a number of legal and technological approaches-for example, modifying the informed consent procedure to acknowledge that privacy cannot be guaranteed, and/or employing a secure cloud computing environment. Cloud computing in particular may allow access to the data in a more controlled fashion than the current practice of downloading and computing on large datasets. Furthermore, it may be particularly advantageous for small labs, given that the burden of many privacy issues falls disproportionately on them in comparison to large corporations and genome centers. Finally, we discuss how education of future genetics researchers will be important, with curriculums emphasizing privacy and data security. However, teaching personal genomics with identifiable subjects in the

  7. Genomics and privacy: implications of the new reality of closed data for the field.

    Directory of Open Access Journals (Sweden)

    Dov Greenbaum

    2011-12-01

    Full Text Available Open source and open data have been driving forces in bioinformatics in the past. However, privacy concerns may soon change the landscape, limiting future access to important data sets, including personal genomics data. Here we survey this situation in some detail, describing, in particular, how the large scale of the data from personal genomic sequencing makes it especially hard to share data, exacerbating the privacy problem. We also go over various aspects of genomic privacy: first, there is basic identifiability of subjects having their genome sequenced. However, even for individuals who have consented to be identified, there is the prospect of very detailed future characterization of their genotype, which, unanticipated at the time of their consent, may be more personal and invasive than the release of their medical records. We go over various computational strategies for dealing with the issue of genomic privacy. One can "slice" and reformat datasets to allow them to be partially shared while securing the most private variants. This is particularly applicable to functional genomics information, which can be largely processed without variant information. For handling the most private data there are a number of legal and technological approaches-for example, modifying the informed consent procedure to acknowledge that privacy cannot be guaranteed, and/or employing a secure cloud computing environment. Cloud computing in particular may allow access to the data in a more controlled fashion than the current practice of downloading and computing on large datasets. Furthermore, it may be particularly advantageous for small labs, given that the burden of many privacy issues falls disproportionately on them in comparison to large corporations and genome centers. Finally, we discuss how education of future genetics researchers will be important, with curriculums emphasizing privacy and data security. However, teaching personal genomics with

  8. Stakeholder engagement: a key component of integrating genomic information into electronic health records.

    Science.gov (United States)

    Hartzler, Andrea; McCarty, Catherine A; Rasmussen, Luke V; Williams, Marc S; Brilliant, Murray; Bowton, Erica A; Clayton, Ellen Wright; Faucett, William A; Ferryman, Kadija; Field, Julie R; Fullerton, Stephanie M; Horowitz, Carol R; Koenig, Barbara A; McCormick, Jennifer B; Ralston, James D; Sanderson, Saskia C; Smith, Maureen E; Trinidad, Susan Brown

    2013-10-01

    Integrating genomic information into clinical care and the electronic health record can facilitate personalized medicine through genetically guided clinical decision support. Stakeholder involvement is critical to the success of these implementation efforts. Prior work on implementation of clinical information systems provides broad guidance to inform effective engagement strategies. We add to this evidence-based recommendations that are specific to issues at the intersection of genomics and the electronic health record. We describe stakeholder engagement strategies employed by the Electronic Medical Records and Genomics Network, a national consortium of US research institutions funded by the National Human Genome Research Institute to develop, disseminate, and apply approaches that combine genomic and electronic health record data. Through select examples drawn from sites of the Electronic Medical Records and Genomics Network, we illustrate a continuum of engagement strategies to inform genomic integration into commercial and homegrown electronic health records across a range of health-care settings. We frame engagement as activities to consult, involve, and partner with key stakeholder groups throughout specific phases of health information technology implementation. Our aim is to provide insights into engagement strategies to guide genomic integration based on our unique network experiences and lessons learned within the broader context of implementation research in biomedical informatics. On the basis of our collective experience, we describe key stakeholder practices, challenges, and considerations for successful genomic integration to support personalized medicine.

  9. Stakeholder consultation insights on the future of genomics at the clinical-public health interface.

    Science.gov (United States)

    Modell, Stephen M; Kardia, Sharon L R; Citrin, Toby

    2014-05-01

    In summer 2011, the Centers for Disease Control and Prevention Office of Public Health Genomics conducted a stakeholder consultation, administered by the University of Michigan Center for Public Health and Community Genomics, and Genetic Alliance, to recommend priorities for public health genomics from 2012 through 2017. Sixty-two responses from health professionals, administrators, and members of the public were pooled with 2 sets of key informant interviews and 3 discussion groups. NVivo 9 and manual methods were used to organize themes. This review offers an interim analysis of progress with respect to the final recommendations, which demonstrated a strong interest in moving genomic discoveries toward implementation and comparative effectiveness (T3/T4) translational research. A translational research continuum exists with familial breast and ovarian cancer at one end and prostate cancer at the other. Cascade screening for inherited arrhythmia syndromes and hypercholesterolemia lags stakeholder recommendations in the United States but not in Europe; implementation of health service-based screening for Lynch syndrome, and integration into electronic health information systems, is on pace with the recommended timeline. A number of options exist to address deficits in the funding of translational research, particularly for oncogenomic gene expression profiling. The goal of personalized risk assessment necessitates both research progress (eg, in whole genome sequencing, as well as provider education in the differentiation of low- vs high-risk status. The public health approach supports an emphasis on genetic test validation while endorsing clinical translation research inclusion of an environmental and population-based perspective. Copyright © 2014 Mosby, Inc. All rights reserved.

  10. Trust-based information system architecture for personal wellness.

    Science.gov (United States)

    Ruotsalainen, Pekka; Nykänen, Pirkko; Seppälä, Antto; Blobel, Bernd

    2014-01-01

    Modern eHealth, ubiquitous health and personal wellness systems take place in an unsecure and ubiquitous information space where no predefined trust occurs. This paper presents novel information model and an architecture for trust based privacy management of personal health and wellness information in ubiquitous environment. The architecture enables a person to calculate a dynamic and context-aware trust value for each service provider, and using it to design personal privacy policies for trustworthy use of health and wellness services. For trust calculation a novel set of measurable context-aware and health information-sensitive attributes is developed. The architecture enables a person to manage his or her privacy in ubiquitous environment by formulating context-aware and service provider specific policies. Focus groups and information modelling was used for developing a wellness information model. System analysis method based on sequential steps that enable to combine results of analysis of privacy and trust concerns and the selection of trust and privacy services was used for development of the information system architecture. Its services (e.g. trust calculation, decision support, policy management and policy binding services) and developed attributes enable a person to define situation-aware policies that regulate the way his or her wellness and health information is processed.

  11. Genome-wide association study of borderline personality disorder reveals genetic overlap with bipolar disorder, major depression and schizophrenia

    DEFF Research Database (Denmark)

    Witt, S H; Streit, F; Jungkunz, M

    2017-01-01

    Borderline personality disorder (BOR) is determined by environmental and genetic factors, and characterized by affective instability and impulsivity, diagnostic symptoms also observed in manic phases of bipolar disorder (BIP). Up to 20% of BIP patients show comorbidity with BOR. This report...... describes the first case-control genome-wide association study (GWAS) of BOR, performed in one of the largest BOR patient samples worldwide. The focus of our analysis was (i) to detect genes and gene sets involved in BOR and (ii) to investigate the genetic overlap with BIP. As there is considerable genetic...... overlap between BIP, major depression (MDD) and schizophrenia (SCZ) and a high comorbidity of BOR and MDD, we also analyzed the genetic overlap of BOR with SCZ and MDD. GWAS, gene-based tests and gene-set analyses were performed in 998 BOR patients and 1545 controls. Linkage disequilibrium score...

  12. 8 CFR 103.5a - Service of notification, decisions, and other papers by the Service.

    Science.gov (United States)

    2010-01-01

    ... in this chapter. (a) Definitions—(1) Routine service. Routine service consists of mailing a copy by... person at his last known address. (3) Personal service involving notices of intention to fine. In... service of Form I-79, Notice of Intention to Fine, may also consist of delivery of the Form I-79 by a...

  13. Analysis of Social Return on Investment in two systems of support for people with severe disabilities: personal assistance and residential service. A case study

    Directory of Open Access Journals (Sweden)

    Agustín Huete García

    2014-06-01

    Full Text Available At present, there are several alternatives to support daily life of people with disabilities, which require different resources: human, institutional, technical, material, financial, etc. In addition, these alternatives involve different impacts on both the life of people with disabilites and their immediate environment. This paper presents a case study that compares an user of personal assistance services of the Program for Independent Living (PAVI with an user of a residential service. The study method used is based on the approach of Social Return on Investment (SROI. It also specifies the selection of cases, the partners consulted to gather concepts and values, data collection, variables and formulas for calculating and monetization. Despite its limited scope, it is possible to draw conclusions about the social return on investment in a “standard profile” receiving personal assistance services compared with a “standard profile” in a residential service.

  14. Patient-controlled encrypted genomic data: an approach to advance clinical genomics

    Directory of Open Access Journals (Sweden)

    Trakadis Yannis J

    2012-07-01

    Full Text Available Abstract Background The revolution in DNA sequencing technologies over the past decade has made it feasible to sequence an individual’s whole genome at a relatively low cost. The potential value of the information generated by genomic technologies for medicine and society is enormous. However, in order for exome sequencing, and eventually whole genome sequencing, to be implemented clinically, a number of major challenges need to be overcome. For instance, obtaining meaningful informed-consent, managing incidental findings and the great volume of data generated (including multiple findings with uncertain clinical significance, re-interpreting the genomic data and providing additional counselling to patients as genetic knowledge evolves are issues that need to be addressed. It appears that medical genetics is shifting from the present “phenotype-first” medical model to a “data-first” model which leads to multiple complexities. Discussion This manuscript discusses the different challenges associated with integrating genomic technologies into clinical practice and describes a “phenotype-first” approach, namely, “Individualized Mutation-weighed Phenotype Search”, and its benefits. The proposed approach allows for a more efficient prioritization of the genes to be tested in a clinical lab based on both the patient’s phenotype and his/her entire genomic data. It simplifies “informed-consent” for clinical use of genomic technologies and helps to protect the patient’s autonomy and privacy. Overall, this approach could potentially render widespread use of genomic technologies, in the immediate future, practical, ethical and clinically useful. Summary The “Individualized Mutation-weighed Phenotype Search” approach allows for an incremental integration of genomic technologies into clinical practice. It ensures that we do not over-medicalize genomic data but, rather, continue our current medical model which is based on serving

  15. Design and Implementation of a Randomized Controlled Trial of Genomic Counseling for Patients with Chronic Disease

    Directory of Open Access Journals (Sweden)

    Kevin Sweet

    2014-01-01

    Full Text Available We describe the development and implementation of a randomized controlled trial to investigate the impact of genomic counseling on a cohort of patients with heart failure (HF or hypertension (HTN, managed at a large academic medical center, the Ohio State University Wexner Medical Center (OSUWMC. Our study is built upon the existing Coriell Personalized Medicine Collaborative (CPMC®. OSUWMC patient participants with chronic disease (CD receive eight actionable complex disease and one pharmacogenomic test report through the CPMC® web portal. Participants are randomized to either the in-person post-test genomic counseling—active arm, versus web-based only return of results—control arm. Study-specific surveys measure: (1 change in risk perception; (2 knowledge retention; (3 perceived personal control; (4 health behavior change; and, for the active arm (5, overall satisfaction with genomic counseling. This ongoing partnership has spurred creation of both infrastructure and procedures necessary for the implementation of genomics and genomic counseling in clinical care and clinical research. This included creation of a comprehensive informed consent document and processes for prospective return of actionable results for multiple complex diseases and pharmacogenomics (PGx through a web portal, and integration of genomic data files and clinical decision support into an EPIC-based electronic medical record. We present this partnership, the infrastructure, genomic counseling approach, and the challenges that arose in the design and conduct of this ongoing trial to inform subsequent collaborative efforts and best genomic counseling practices.

  16. Asthma pharmacogenetics and the development of genetic profiles for personalized medicine

    Directory of Open Access Journals (Sweden)

    Ortega VE

    2015-01-01

    Full Text Available Victor E Ortega, Deborah A Meyers, Eugene R Bleecker Center for Genomics and Personalized Medicine Research, Pulmonary Medicine, Wake Forest School of Medicine, Winston-Salem, NC, USA Abstract: Human genetics research will be critical to the development of genetic profiles for personalized or precision medicine in asthma. Genetic profiles will consist of gene variants that predict individual disease susceptibility and risk for progression, predict which pharmacologic therapies will result in a maximal therapeutic benefit, and predict whether a therapy will result in an adverse response and should be avoided in a given individual. Pharmacogenetic studies of the glucocorticoid, leukotriene, and β2-adrenergic receptor pathways have focused on candidate genes within these pathways and, in addition to a small number of genome-wide association studies, have identified genetic loci associated with therapeutic responsiveness. This review summarizes these pharmacogenetic discoveries and the future of genetic profiles for personalized medicine in asthma. The benefit of a personalized, tailored approach to health care delivery is needed in the development of expensive biologic drugs directed at a specific biologic pathway. Prior pharmacogenetic discoveries, in combination with additional variants identified in future studies, will form the basis for future genetic profiles for personalized tailored approaches to maximize therapeutic benefit for an individual asthmatic while minimizing the risk for adverse events. Keywords: asthma, pharmacogenetics, response heterogeneity, single nucleotide polymorphism, genome-wide association study

  17. Cloud computing for comparative genomics.

    Science.gov (United States)

    Wall, Dennis P; Kudtarkar, Parul; Fusaro, Vincent A; Pivovarov, Rimma; Patil, Prasad; Tonellato, Peter J

    2010-05-18

    Large comparative genomics studies and tools are becoming increasingly more compute-expensive as the number of available genome sequences continues to rise. The capacity and cost of local computing infrastructures are likely to become prohibitive with the increase, especially as the breadth of questions continues to rise. Alternative computing architectures, in particular cloud computing environments, may help alleviate this increasing pressure and enable fast, large-scale, and cost-effective comparative genomics strategies going forward. To test this, we redesigned a typical comparative genomics algorithm, the reciprocal smallest distance algorithm (RSD), to run within Amazon's Elastic Computing Cloud (EC2). We then employed the RSD-cloud for ortholog calculations across a wide selection of fully sequenced genomes. We ran more than 300,000 RSD-cloud processes within the EC2. These jobs were farmed simultaneously to 100 high capacity compute nodes using the Amazon Web Service Elastic Map Reduce and included a wide mix of large and small genomes. The total computation time took just under 70 hours and cost a total of $6,302 USD. The effort to transform existing comparative genomics algorithms from local compute infrastructures is not trivial. However, the speed and flexibility of cloud computing environments provides a substantial boost with manageable cost. The procedure designed to transform the RSD algorithm into a cloud-ready application is readily adaptable to similar comparative genomics problems.

  18. Confidentiality Issues and Use of Sexually Transmitted Disease Services Among Sexually Experienced Persons Aged 15-25 Years - United States, 2013-2015.

    Science.gov (United States)

    Leichliter, Jami S; Copen, Casey; Dittus, Patricia J

    2017-03-10

    National-level data are limited regarding confidentiality-related issues and the use of sexually transmitted disease (STD) services for adolescents and young adults. Changes in the U.S. health care system have permitted dependent children to remain on a parent's health insurance plan until the child's 26th birthday and required coverage of certain preventive services, including some STD services, without cost sharing for most plans (1,2). Although these provisions likely facilitate access to the health care system, adolescents and young adults might not seek care or might delay seeking care for certain services because of concerns about confidentiality, including fears that their parents might find out (3,4). Therefore, it is important to examine STD services and confidentiality-related issues among persons aged 15-25 years in the United States. CDC analyzed data from the 2013-2015 National Survey of Family Growth and found that 12.7% of sexually experienced youths (adolescents aged 15-17 years and those young adults aged 18-25 years who were on a parent's insurance plan) would not seek sexual and reproductive health care because of concerns that their parents might find out. Particularly concerned were persons aged 15-17 years (22.6%). Females with confidentiality concerns regarding seeking sexual and reproductive health care reported a lower prevalence of receipt of chlamydia screening (17.1%) than did females who did not cite such concerns (38.7%). More adolescents aged 15-17 years who spent time alone with a health care provider (without a parent in the room) reported receipt of a sexual risk assessment (71.1%) and, among females, chlamydia testing (34.0%), than did those who did not spend time alone (36.6% and 14.9%, respectively). The results indicated that confidentiality-related issues were associated with less reported use of some STD services, especially for younger persons and females. Spending time alone with a provider (i.e., without a parent present

  19. NIMH Repository and Genomics Resources (RGR)

    Data.gov (United States)

    U.S. Department of Health & Human Services — The NIMH Repository and Genomics Resource (RGR) stores biosamples, genetic, pedigree and clinical data collected in designated NIMH-funded human subject studies. The...

  20. Salud/Servicios Personales. Libro del Profesor. (Health/Personal Services. Teacher's Guide). B2. CHOICE (Challenging Options in Career Education).

    Science.gov (United States)

    Mid-Hudson Migrant Education Center, New Paltz, NY.

    Written in Spanish, the guide comprises the first grade unit of a career education curriculum developed for migrant students. The guide covers 12 health and personal service occupations--blacksmith, television repairer, hairdresser/barber, day care worker, waitress, gas station attendant, family doctor, ambulance driver/attendant, dietician,…

  1. Communication-based services for persons with severe disabilities in schools: a survey of speech-language pathologists.

    Science.gov (United States)

    Siegel, Ellin B; Maddox, Laura L; Ogletree, Billy T; Westling, David L

    2010-01-01

    Speech-language pathologists in school settings were surveyed with an instrument created from the National Joint Committee for the Communication Needs of Persons with Severe Disabilities' quality indicators self-assessment tool. Participants valued practice indicators of quality communication assessment and intervention to a higher degree than their actual practice. These findings appear to suggest that SLPs may not provide best practice services to individuals with severe disabilities. Suggestions for enhancing inservice training and intervention practices of SLPs and team members who work with individuals with severe disabilities are provided. The reader will be able to; (1) understand the value of using the NJC quality indicators to guide SLP practices with individuals with severe disabilities in schools; (2) recognize that research indicates that SLPs working with individuals with severe disabilities in schools may not provide best practice services to the extent that they value these practices; (3) discuss possible strategies to increase the quality of services provided to individuals with severe disabilities in schools.

  2. 78 FR 66752 - National Human Genome Research Institute; Amended Notice of Meeting

    Science.gov (United States)

    2013-11-06

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... National Human Genome Research Institute Special Emphasis Panel, October 15, 2013, 01:00 p.m. to October 15, 2013, 02:30 p.m., National Human Genome Research Institute, 5635 Fishers Lane, Suite 3055, Rockville...

  3. [Validation of the Personal Wellbeing Index (PWI) in vulnerable users of health care services in Santiago, Chile].

    Science.gov (United States)

    Oyanedel, Juan Carlos; Vargas, Salvador; Mella, Camila; Páez, Darío

    2015-09-01

    Personal well-being calculates quality of life in terms of the necessary conditions required to live well. To validate the Personal Wellbeing Index (PWI) in a representative sample of vulnerable users of the public health system in Santiago, Chile. A probabilistic and multistage sample consisting of 400 individuals aged 44 ± 18 years (61% females) belonging to the lower income group of the National Health Fund (FONASA), residents of Gran Santiago was surveyed. Internal consistency and correlation between items and scale were examined. Structure was analyzed through confirmatory factor analysis. The seven-item PWI is a good indicator of subjective well-being in the population under study, considering internal consistency, factor loadings, relation with overall life satisfaction and goodness of fit. The indicators mostly associated with personal well-being are the socioeconomic level followed by relationships with the community, health conditions and achievements. The 7-item version of the PWI is suitable for application in vulnerable health service users.

  4. Development of a curriculum in molecular diagnostics, genomics and personalized medicine for dermatology trainees.

    Science.gov (United States)

    Murphy, Michael J; Shahriari, Neda; Payette, Michael; Mnayer, Laila; Elaba, Zendee

    2016-10-01

    Results of molecular studies are redefining the diagnosis and management of a wide range of skin disorders. Dermatology training programs maintain a relative gap in relevant teaching. To develop a curriculum in molecular diagnostics, genomics and personalized medicine for dermatology trainees at our institution. The aim is to provide trainees with a specialty-appropriate, working knowledge in clinical molecular dermatology. The Departments of Dermatology and Pathology and Laboratory Medicine collaborated on the design and implementation of educational objectives and teaching modalities for the new curriculum. A multidisciplinary curriculum was developed. It comprises: (i) assigned reading from the medical literature and reference textbook; (ii) review of teaching sets; (iii) two 1 hour lectures; (iv) trainee presentations; (v) 1-week rotation in a clinical molecular pathology and cytogenetics laboratory; and (vi) assessments and feedback. Residents who participated in the curriculum to date have found the experience to be of value. Our curriculum provides a framework for other dermatology residency programs to develop their own specific approach to molecular diagnostics education. Such training will provide a foundation for lifelong learning as molecular testing evolves and becomes integral to the practice of dermatology. © 2016 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.

  5. Utilisation of formal and informal care and services at home among persons with dementia: a cross-sectional study.

    Science.gov (United States)

    Bökberg, Christina; Ahlström, Gerd; Karlsson, Staffan

    2017-09-04

    The progression of dementia disease implies increasing needs for both informal and formal care and services but also risk of institutionalisation. To better adjust care and services in the phase preceding institutionalisation it is important to find out whether utilisation of formal and informal care and services is determined by increased needs and by who meets the needs. The aim was to compare persons with dementia (65+) with different levels of cognitive impairment, regarding utilisation of formal and informal care and service at home. The participants consisted of 177 persons with dementia ≥65 years old and at risk of nursing home admission, divided into groups according to their cognitive function. Structured interviews were conducted based on questionnaires about type and amount of formal and informal care utilised, as well as questions regarding cognitive impairment, dependency in activities of daily living (ADLs) and neuropsychiatric symptoms. To analyse the data, descriptive and comparative statistics were used. The findings revealed that the group with severe dementia used significantly more help with ADLs and supervision in terms of time (number of hours and days) provided by the informal caregiver, compared with the group with moderate dementia. Utilisation of formal care and services was highest in the group with the most severe cognitive impairments (Standardized Mini-Mental State Examination score of <9). The group with severe dementia were more dependent in ADLs and had more neuropsychiatric symptoms (hallucinations and motor disturbances). They were younger and more often cohabitated with the informal caregiver, compared with the group with moderate dementia. This study shows that in the phase preceding institutionalisation the ADL and supervision needs due to progression of dementia appear to tend to be met first and foremost by the informal caregivers. © 2017 Nordic College of Caring Science.

  6. 28 CFR 541.46 - Programs and services.

    Science.gov (United States)

    2010-07-01

    ... allowed. (k) Food service and personal hygiene. Staff shall provide food services and personal hygiene... housekeeping rules in the unit. This material may come from an inmate's personal property or from the chaplain... commissary items to ensure the safety and security of the unit. (o) Personal property. Personal property...

  7. Providing Personalized Energy Management and Awareness Services for Energy Efficiency in Smart Buildings.

    Science.gov (United States)

    Fotopoulou, Eleni; Zafeiropoulos, Anastasios; Terroso-Sáenz, Fernando; Şimşek, Umutcan; González-Vidal, Aurora; Tsiolis, George; Gouvas, Panagiotis; Liapis, Paris; Fensel, Anna; Skarmeta, Antonio

    2017-09-07

    Considering that the largest part of end-use energy consumption worldwide is associated with the buildings sector, there is an inherent need for the conceptualization, specification, implementation, and instantiation of novel solutions in smart buildings, able to achieve significant reductions in energy consumption through the adoption of energy efficient techniques and the active engagement of the occupants. Towards the design of such solutions, the identification of the main energy consuming factors, trends, and patterns, along with the appropriate modeling and understanding of the occupants' behavior and the potential for the adoption of environmentally-friendly lifestyle changes have to be realized. In the current article, an innovative energy-aware information technology (IT) ecosystem is presented, aiming to support the design and development of novel personalized energy management and awareness services that can lead to occupants' behavioral change towards actions that can have a positive impact on energy efficiency. Novel information and communication technologies (ICT) are exploited towards this direction, related mainly to the evolution of the Internet of Things (IoT), data modeling, management and fusion, big data analytics, and personalized recommendation mechanisms. The combination of such technologies has resulted in an open and extensible architectural approach able to exploit in a homogeneous, efficient and scalable way the vast amount of energy, environmental, and behavioral data collected in energy efficiency campaigns and lead to the design of energy management and awareness services targeted to the occupants' lifestyles. The overall layered architectural approach is detailed, including design and instantiation aspects based on the selection of set of available technologies and tools. Initial results from the usage of the proposed energy aware IT ecosystem in a pilot site at the University of Murcia are presented along with a set of identified

  8. Developing genomic knowledge bases and databases to support clinical management: current perspectives.

    Science.gov (United States)

    Huser, Vojtech; Sincan, Murat; Cimino, James J

    2014-01-01

    Personalized medicine, the ability to tailor diagnostic and treatment decisions for individual patients, is seen as the evolution of modern medicine. We characterize here the informatics resources available today or envisioned in the near future that can support clinical interpretation of genomic test results. We assume a clinical sequencing scenario (germline whole-exome sequencing) in which a clinical specialist, such as an endocrinologist, needs to tailor patient management decisions within his or her specialty (targeted findings) but relies on a genetic counselor to interpret off-target incidental findings. We characterize the genomic input data and list various types of knowledge bases that provide genomic knowledge for generating clinical decision support. We highlight the need for patient-level databases with detailed lifelong phenotype content in addition to genotype data and provide a list of recommendations for personalized medicine knowledge bases and databases. We conclude that no single knowledge base can currently support all aspects of personalized recommendations and that consolidation of several current resources into larger, more dynamic and collaborative knowledge bases may offer a future path forward.

  9. GDC 2: Compression of large collections of genomes.

    Science.gov (United States)

    Deorowicz, Sebastian; Danek, Agnieszka; Niemiec, Marcin

    2015-06-25

    The fall of prices of the high-throughput genome sequencing changes the landscape of modern genomics. A number of large scale projects aimed at sequencing many human genomes are in progress. Genome sequencing also becomes an important aid in the personalized medicine. One of the significant side effects of this change is a necessity of storage and transfer of huge amounts of genomic data. In this paper we deal with the problem of compression of large collections of complete genomic sequences. We propose an algorithm that is able to compress the collection of 1092 human diploid genomes about 9,500 times. This result is about 4 times better than what is offered by the other existing compressors. Moreover, our algorithm is very fast as it processes the data with speed 200 MB/s on a modern workstation. In a consequence the proposed algorithm allows storing the complete genomic collections at low cost, e.g., the examined collection of 1092 human genomes needs only about 700 MB when compressed, what can be compared to about 6.7 TB of uncompressed FASTA files. The source code is available at http://sun.aei.polsl.pl/REFRESH/index.php?page=projects&project=gdc&subpage=about.

  10. 78 FR 68856 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2013-11-15

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... Nakamura, Ph.D., Scientific Review Officer, Scientific Review Branch, National Human Genome Research...-402-0838. [[Page 68857

  11. 7 CFR 33.2 - Person.

    Science.gov (United States)

    2010-01-01

    ... 7 Agriculture 2 2010-01-01 2010-01-01 false Person. 33.2 Section 33.2 Agriculture Regulations of the Department of Agriculture AGRICULTURAL MARKETING SERVICE (Standards, Inspections, Marketing... ISSUED UNDER AUTHORITY OF THE EXPORT APPLE ACT Definitions § 33.2 Person. Person means an individual...

  12. Design of a randomized controlled trial for genomic carrier screening in healthy patients seeking preconception genetic testing.

    Science.gov (United States)

    Kauffman, Tia L; Wilfond, Benjamin S; Jarvik, Gail P; Leo, Michael C; Lynch, Frances L; Reiss, Jacob A; Richards, C Sue; McMullen, Carmit; Nickerson, Deborah; Dorschner, Michael O; Goddard, Katrina A B

    2017-02-01

    Population-based carrier screening is limited to well-studied or high-impact genetic conditions for which the benefits may outweigh the associated harms and costs. As the cost of genome sequencing declines and availability increases, the balance of risks and benefits may change for a much larger number of genetic conditions, including medically actionable additional findings. We designed an RCT to evaluate genomic clinical sequencing for women and partners considering a pregnancy. All results are placed into the medical record for use by healthcare providers. Through quantitative and qualitative measures, including baseline and post result disclosure surveys, post result disclosure interviews, 1-2year follow-up interviews, and team journaling, we are obtaining data about the clinical and personal utility of genomic carrier screening in this population. Key outcomes include the number of reportable carrier and additional findings, and the comparative cost, utilization, and psychosocial impacts of usual care vs. genomic carrier screening. As the study progresses, we will compare the costs of genome sequencing and usual care as well as the cost of screening, pattern of use of genetic or mental health counseling services, number of outpatient visits, and total healthcare costs. This project includes novel investigation into human reactions and responses from would-be parents who are learning information that could both affect a future pregnancy and their own health. Copyright © 2016 The Authors. Published by Elsevier Inc. All rights reserved.

  13. The impact of threshold language assistance programming on the accessibility of mental health services for persons with limited English proficiency in the Medi-Cal setting.

    Science.gov (United States)

    McClellan, Sean R; Wu, Frances M; Snowden, Lonnie R

    2012-06-01

    Title VI of the 1964 Civil Rights Act prohibits federal funds recipients from providing care to limited English proficiency (LEP) persons more limited in scope or lower in quality than care provided to others. In 1999, the California Department of Mental Health implemented a "threshold language access policy" to meet its Title VI obligations. Under this policy, Medi-Cal agencies must provide language assistance programming in a non-English language where a county's Medical population contains either 3000 residents or 5% speakers of that language. We examine the impact of threshold language policy-required language assistance programming on LEP persons' access to mental health services by analyzing the county-level penetration rate of services for Russian, Spanish, and Vietnamese speakers across 34 California counties, over 10 years of quarterly data. Exploiting a time series with nonequivalent control group study design, we studied this phenomena using linear regression with random county effects to account for trends over time. Threshold language policy-required assistance programming led to an immediate and significant increase in the penetration rate of mental health services for Russian (8.2, P language speaking persons. Threshold language assistance programming was effective in increasing mental health access for Russian and Vietnamese, but not for Spanish-speaking LEP persons.

  14. Identification of genetic loci shared between schizophrenia and the Big Five personality traits.

    Science.gov (United States)

    Smeland, Olav B; Wang, Yunpeng; Lo, Min-Tzu; Li, Wen; Frei, Oleksandr; Witoelar, Aree; Tesli, Martin; Hinds, David A; Tung, Joyce Y; Djurovic, Srdjan; Chen, Chi-Hua; Dale, Anders M; Andreassen, Ole A

    2017-05-22

    Schizophrenia is associated with differences in personality traits, and recent studies suggest that personality traits and schizophrenia share a genetic basis. Here we aimed to identify specific genetic loci shared between schizophrenia and the Big Five personality traits using a Bayesian statistical framework. Using summary statistics from genome-wide association studies (GWAS) on personality traits in the 23andMe cohort (n = 59,225) and schizophrenia in the Psychiatric Genomics Consortium cohort (n = 82,315), we evaluated overlap in common genetic variants. The Big Five personality traits neuroticism, extraversion, openness, agreeableness and conscientiousness were measured using a web implementation of the Big Five Inventory. Applying the conditional false discovery rate approach, we increased discovery of genetic loci and identified two loci shared between neuroticism and schizophrenia and six loci shared between openness and schizophrenia. The study provides new insights into the relationship between personality traits and schizophrenia by highlighting genetic loci involved in their common genetic etiology.

  15. Genomic analysis and selected molecular pathways in rare cancers

    International Nuclear Information System (INIS)

    Liu, Stephen V; Lenkiewicz, Elizabeth; Evers, Lisa; Holley, Tara; Kiefer, Jeffrey; Demeure, Michael J; Ramanathan, Ramesh K; Von Hoff, Daniel D; Barrett, Michael T; Ruiz, Christian; Glatz, Katharina; Bubendorf, Lukas; Eng, Cathy

    2012-01-01

    It is widely accepted that many cancers arise as a result of an acquired genomic instability and the subsequent evolution of tumor cells with variable patterns of selected and background aberrations. The presence and behaviors of distinct neoplastic cell populations within a patient's tumor may underlie multiple clinical phenotypes in cancers. A goal of many current cancer genome studies is the identification of recurring selected driver events that can be advanced for the development of personalized therapies. Unfortunately, in the majority of rare tumors, this type of analysis can be particularly challenging. Large series of specimens for analysis are simply not available, allowing recurring patterns to remain hidden. In this paper, we highlight the use of DNA content-based flow sorting to identify and isolate DNA-diploid and DNA-aneuploid populations from tumor biopsies as a strategy to comprehensively study the genomic composition and behaviors of individual cancers in a series of rare solid tumors: intrahepatic cholangiocarcinoma, anal carcinoma, adrenal leiomyosarcoma, and pancreatic neuroendocrine tumors. We propose that the identification of highly selected genomic events in distinct tumor populations within each tumor can identify candidate driver events that can facilitate the development of novel, personalized treatment strategies for patients with cancer. (paper)

  16. 75 FR 44800 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2010-07-29

    ... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Human Genome... for Human Genome Research. The meeting will be closed to the public in accordance with the provisions... Committee: National Advisory Council for Human Genome Research. Date: August 18, 2010. Time: 1 p.m. to 3 p.m...

  17. Dimensions of personality pathology in adolescents: Relations to DSM-IV personality disorder symptoms

    OpenAIRE

    Tromp, N.B.; Koot, H.M.

    2009-01-01

    The aim of the present study was to relate and compare two approaches to personality pathology in adolescents. Dimensions of personality pathology, assessed by the Dimensional Assessment of Personality Pathology-Basic Questionnaire for Adolescents (DAPP-BQ-A; Tromp & Koot, 2008), were related to DSM-IV personality disorder (PD) symptoms in 168 adolescents referred for mental health services. Correlational analyses revealed that the DAPP-BQ-A higher- and lower-order dimensions were related to ...

  18. Human cytochrome P450 and personalized medicine.

    Science.gov (United States)

    Chen, Qi; Wei, Dongqing

    2015-01-01

    Personalized medicine has become a hot topic ascribed to the development of Human Genome Project. And currently, bioinformatics methodology plays an essential role in personal drug design. Here in this review we mainly focused on the basic introduction of the SNPs of human drug metabolic enzymes and their relationships with personalized medicine. Some common bioinformatics analysis methods and latest progresses and applications in personal drug design have also been discussed. Thus bioinformatics studies on SNPs of human CYP450 genes will contribute to indicate the most possible genes that are associated with human diseases and relevant therapeutic targets, identify and predict the drug efficacy and adverse drug response, investigate individual gene specific properties and then provide personalized and optimal clinic therapies.

  19. Within-person analysis of welfare transitions in a longitudinal panel survey reveals change in mental health service use.

    Science.gov (United States)

    Pymont, C; Schofield, T P; Butterworth, P

    2017-12-01

    While international research shows that receipt of welfare benefits is associated with poor mental health, less is known about the relationship between welfare receipt and mental health service use. We investigate whether within-person change in welfare recipient status is associated with change in mental health service use. Analysis of two waves of data from an Australian national household survey. Random- and fixed-effect models considered the effect of change in welfare receipt status, and assessed whether change in mental health service use differed by type of welfare benefit or the direction of welfare transition. Individuals were more likely to report greater mental health service use at times of welfare receipt. These associations were attenuated, but remained significant, after adjusting for mental health. Increased health service use was not tied to specific types of welfare benefits. The increase in mental health service use associated with a transition onto welfare benefits was much greater than the decline in service use associated with the transition off benefits. Within individuals, welfare receipt is associated with greater mental health service use. While this does reflect poorer mental health at the time of welfare receipt, other factors seem to facilitate health service use. © The Author 2016. Published by Oxford University Press on behalf of Faculty of Public Health. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

  20. Cloud computing for comparative genomics

    Directory of Open Access Journals (Sweden)

    Pivovarov Rimma

    2010-05-01

    Full Text Available Abstract Background Large comparative genomics studies and tools are becoming increasingly more compute-expensive as the number of available genome sequences continues to rise. The capacity and cost of local computing infrastructures are likely to become prohibitive with the increase, especially as the breadth of questions continues to rise. Alternative computing architectures, in particular cloud computing environments, may help alleviate this increasing pressure and enable fast, large-scale, and cost-effective comparative genomics strategies going forward. To test this, we redesigned a typical comparative genomics algorithm, the reciprocal smallest distance algorithm (RSD, to run within Amazon's Elastic Computing Cloud (EC2. We then employed the RSD-cloud for ortholog calculations across a wide selection of fully sequenced genomes. Results We ran more than 300,000 RSD-cloud processes within the EC2. These jobs were farmed simultaneously to 100 high capacity compute nodes using the Amazon Web Service Elastic Map Reduce and included a wide mix of large and small genomes. The total computation time took just under 70 hours and cost a total of $6,302 USD. Conclusions The effort to transform existing comparative genomics algorithms from local compute infrastructures is not trivial. However, the speed and flexibility of cloud computing environments provides a substantial boost with manageable cost. The procedure designed to transform the RSD algorithm into a cloud-ready application is readily adaptable to similar comparative genomics problems.

  1. A public resource facilitating clinical use of genomes.

    NARCIS (Netherlands)

    Ball, M.P.; Thakuria, J.V.; Zaranek, A.W.; Clegg, T.; Rosenbaum, A.M.; Wu, X.; Angrist, M.; Bhak, J.; Bobe, J.; Callow, M.J.; Cano, C.; Chou, M.F.; Chung, W.K.; Douglas, S.M.; Estep, P.W.; Gore, A.; Hulick, P.; Labarga, A.; Lee, J.-H.; Lunshof, J.E.; Kim, B.C.; Kim, J.L.; Li, Z.; Murray, M.F.; Nilsen, G.B.; Peters, B.A.; Raman, A.M.; Rienhoff, H.Y.; Robasky, K.; Wheeler, M.T.; Vandewege, W.; Vorhaus, D.B.; Yang, Y.L.; Yang, L.; Aach, J.; Ashley, E.A.; Drmanac, R.; Kim, S.-J.; Li, J.B.; Peshkin, L.; Seidman, S.E.; Seo, J.-S.; Zhang, K.; Rehm, H.L.; Church, G.M.

    2012-01-01

    Rapid advances in DNA sequencing promise to enable new diagnostics and individualized therapies. Achieving personalized medicine, however, will require extensive research on highly reidentifiable, integrated datasets of genomic and health information. To assist with this, participants in the

  2. Harm reduction services as a point-of-entry to and source of end-of-life care and support for homeless and marginally housed persons who use alcohol and/or illicit drugs: a qualitative analysis.

    Science.gov (United States)

    McNeil, Ryan; Guirguis-Younger, Manal; Dilley, Laura B; Aubry, Tim D; Turnbull, Jeffrey; Hwang, Stephen W

    2012-05-17

    Homeless and marginally housed persons who use alcohol and/or illicit drugs often have end-of-life care needs that go unmet due to barriers that they face to accessing end-of-life care services. Many homeless and marginally housed persons who use these substances must therefore rely upon alternate sources of end-of-life care and support. This article explores the role of harm reduction services in end-of-life care services delivery to homeless and marginally housed persons who use alcohol and/or illicit drugs. A qualitative case study design was used to explore end-of-life care services delivery to homeless and marginally housed persons in six Canadian cities. A key objective was to explore the role of harm reduction services. 54 health and social services professionals participated in semi-structured qualitative interviews. All participants reported that they provided care and support to this population at end-of-life. Harm reduction services (e.g., syringe exchange programs, managed alcohol programs, etc.) were identified as a critical point-of-entry to and source of end-of-life care and support for homeless and marginally housed persons who use alcohol and/or illicit drugs. Where possible, harm reduction services facilitated referrals to end-of-life care services for this population. Harm reduction services also provided end-of-life care and support when members of this population were unable or unwilling to access end-of-life care services, thereby improving quality-of-life and increasing self-determination regarding place-of-death. While partnerships between harm reduction programs and end-of-life care services are identified as one way to improve access, it is noted that more comprehensive harm reduction services might be needed in end-of-life care settings if they are to engage this underserved population.

  3. Multimodal hybrid reasoning methodology for personalized wellbeing services.

    Science.gov (United States)

    Ali, Rahman; Afzal, Muhammad; Hussain, Maqbool; Ali, Maqbool; Siddiqi, Muhammad Hameed; Lee, Sungyoung; Ho Kang, Byeong

    2016-02-01

    A wellness system provides wellbeing recommendations to support experts in promoting a healthier lifestyle and inducing individuals to adopt healthy habits. Adopting physical activity effectively promotes a healthier lifestyle. A physical activity recommendation system assists users to adopt daily routines to form a best practice of life by involving themselves in healthy physical activities. Traditional physical activity recommendation systems focus on general recommendations applicable to a community of users rather than specific individuals. These recommendations are general in nature and are fit for the community at a certain level, but they are not relevant to every individual based on specific requirements and personal interests. To cover this aspect, we propose a multimodal hybrid reasoning methodology (HRM) that generates personalized physical activity recommendations according to the user׳s specific needs and personal interests. The methodology integrates the rule-based reasoning (RBR), case-based reasoning (CBR), and preference-based reasoning (PBR) approaches in a linear combination that enables personalization of recommendations. RBR uses explicit knowledge rules from physical activity guidelines, CBR uses implicit knowledge from experts׳ past experiences, and PBR uses users׳ personal interests and preferences. To validate the methodology, a weight management scenario is considered and experimented with. The RBR part of the methodology generates goal, weight status, and plan recommendations, the CBR part suggests the top three relevant physical activities for executing the recommended plan, and the PBR part filters out irrelevant recommendations from the suggested ones using the user׳s personal preferences and interests. To evaluate the methodology, a baseline-RBR system is developed, which is improved first using ranged rules and ultimately using a hybrid-CBR. A comparison of the results of these systems shows that hybrid-CBR outperforms the

  4. Personality Development during Teacher Preparation.

    Science.gov (United States)

    Corcoran, Roisin P; O'Flaherty, Joanne

    2016-01-01

    Objective: The purpose of this 3-year longitudinal study was to examine pre-service teachers' personality trajectories as measured by the IPIP Big-Five factor markers during teacher preparation. The relationship between students' personality traits, social desirability, and prior academic attainment was also examined. Method: This 3-year longitudinal study invited participants from the first year of a 4-year undergraduate (UG) pre-service teacher education program, the class of 2017. The sample consisted of 305 students. Results: The results suggest that extraversion, agreeableness, conscientiousness, emotional stability, and openness to experience were best represented by a non-significant longitudinal change in means. Results also suggest that social desirability predicts agreeableness and emotional stability with small to moderate effect sizes. Conclusion: The study concludes that no value is added to pre-service teachers' personality traits during 3 years of tertiary education. Furthermore, the data presented does not support the view that academic attainment is a good predictor of personality traits. Implications for educational research, theory, and practice are considered.

  5. The Role of Faith-Based Organizations in the Education, Support, and Services for Persons Living with Human Immunodeficiency Virus/Acquired Immunodeficiency Syndrome.

    Science.gov (United States)

    Stephens, Teresa M

    2018-03-01

    Faith-based organizations are in a unique position to provide resilience-enhancing efforts for persons living with human immunodeficiency virus/AIDS. Many persons living with human immunodeficiency virus/AIDS report having a strong faith or religious affiliation, with a large percentage attending church services on a regular basis. Faith-based organizations can use these factors to reach out to these individuals and effectively promote health, well-being, education, and support. Faith-based organizations can contribute to the reduction of stigma and isolation for persons living with human immunodeficiency virus/AIDS. Copyright © 2017 Elsevier Inc. All rights reserved.

  6. Heritability estimates of the Big Five personality traits based on common genetic variants.

    Science.gov (United States)

    Power, R A; Pluess, M

    2015-07-14

    According to twin studies, the Big Five personality traits have substantial heritable components explaining 40-60% of the variance, but identification of associated genetic variants has remained elusive. Consequently, knowledge regarding the molecular genetic architecture of personality and to what extent it is shared across the different personality traits is limited. Using genomic-relatedness-matrix residual maximum likelihood analysis (GREML), we here estimated the heritability of the Big Five personality factors (extraversion, agreeableness, conscientiousness, neuroticism and openness for experience) in a sample of 5011 European adults from 527,469 single-nucleotide polymorphisms across the genome. We tested for the heritability of each personality trait, as well as for the genetic overlap between the personality factors. We found significant and substantial heritability estimates for neuroticism (15%, s.e. = 0.08, P = 0.04) and openness (21%, s.e. = 0.08, P Big Five personality traits using the GREML approach. Findings should be considered exploratory and suggest that detectable heritability estimates based on common variants is shared between neuroticism and openness to experiences.

  7. Break Breast Cancer Addiction by CRISPR/Cas9 Genome Editing.

    Science.gov (United States)

    Yang, Haitao; Jaeger, MariaLynn; Walker, Averi; Wei, Daniel; Leiker, Katie; Weitao, Tao

    2018-01-01

    Breast cancer is the leading diagnosed cancer for women globally. Evolution of breast cancer in tumorigenesis, metastasis and treatment resistance appears to be driven by the aberrant gene expression and protein degradation encoded by the cancer genomes. The uncontrolled cancer growth relies on these cellular events, thus constituting the cancerous programs and rendering the addiction towards them. These programs are likely the potential anticancer biomarkers for Personalized Medicine of breast cancer. This review intends to delineate the impact of the CRSPR/Cas-mediated genome editing in identification and validation of these anticancer biomarkers. It reviews the progress in three aspects of CRISPR/Cas9-mediated editing of the breast cancer genomes: Somatic genome editing, transcription and protein degradation addictions.

  8. Molecular Dynamics: New Frontier in Personalized Medicine.

    Science.gov (United States)

    Sneha, P; Doss, C George Priya

    2016-01-01

    The field of drug discovery has witnessed infinite development over the last decade with the demand for discovery of novel efficient lead compounds. Although the development of novel compounds in this field has seen large failure, a breakthrough in this area might be the establishment of personalized medicine. The trend of personalized medicine has shown stupendous growth being a hot topic after the successful completion of Human Genome Project and 1000 genomes pilot project. Genomic variant such as SNPs play a vital role with respect to inter individual's disease susceptibility and drug response. Hence, identification of such genetic variants has to be performed before administration of a drug. This process requires high-end techniques to understand the complexity of the molecules which might bring an insight to understand the compounds at their molecular level. To sustenance this, field of bioinformatics plays a crucial role in revealing the molecular mechanism of the mutation and thereby designing a drug for an individual in fast and affordable manner. High-end computational methods, such as molecular dynamics (MD) simulation has proved to be a constitutive approach to detecting the minor changes associated with an SNP for better understanding of the structural and functional relationship. The parameters used in molecular dynamic simulation elucidate different properties of a macromolecule, such as protein stability and flexibility. MD along with docking analysis can reveal the synergetic effect of an SNP in protein-ligand interaction and provides a foundation for designing a particular drug molecule for an individual. This compelling application of computational power and the advent of other technologies have paved a promising way toward personalized medicine. In this in-depth review, we tried to highlight the different wings of MD toward personalized medicine. © 2016 Elsevier Inc. All rights reserved.

  9. 48 CFR 237.104 - Personal services contracts.

    Science.gov (United States)

    2010-10-01

    ... intelligence component or counter-intelligence organization of DoD; or (iii) Directly support the mission of... travel between home or place of business and official duty station. (iii) Coordinate with the civilian... SYSTEM, DEPARTMENT OF DEFENSE SPECIAL CATEGORIES OF CONTRACTING SERVICE CONTRACTING Service Contracts...

  10. Benchmarking personal cloud storage

    NARCIS (Netherlands)

    Drago, Idilio; Bocchi, Enrico; Mellia, Marco; Slatman, Herman; Pras, Aiko

    2013-01-01

    Personal cloud storage services are data-intensive applications already producing a significant share of Internet traffic. Several solutions offered by different companies attract more and more people. However, little is known about each service capabilities, architecture and - most of all -

  11. Proposal of a service delivery integration index of home care for older persons: application in several European cities

    Directory of Open Access Journals (Sweden)

    Jean-Claude Henrard

    2006-07-01

    Full Text Available Purpose: To propose an integration index of home care delivery to older persons, to study its validity and to apply it to home care services of European cities. Theory: Home care delivery integration was based on two dimensions referring to process-centred integration and organisational structure approach. Method: Items considered as part of both dimensions according to an expert consensus (face validity were extracted from a standardised questionnaire used in “Aged in Home care” (AdHoc study to capture basic characteristics of home care services. Their summation leads to a services' delivery integration index. This index was applied to AdHoc services. A factor analysis was computed in order to empirically test the validity of the theoretical constructs. The plot of the settings was performed. Results: Application of the index ranks home care services in four groups according to their score. Factor analysis identifies a first factor which opposes working arrangement within service to organisational structure bringing together provisions for social care. A second factor corresponds to basic nursing care and therapies. Internal consistency for those three domains ranges from 0.78 to 0.93. When plotting the different settings different models of service delivery appear. Conclusion: The proposed index shows that behind a total score several models of care delivery are hidden. Comparison of service delivery integration should take into account this heterogeneity.

  12. Arquitectura orientada a servicios para software de apoyo para el proceso personal de software A service oriented architecture for the implementation of the personal software process

    Directory of Open Access Journals (Sweden)

    Erick Salinas

    2011-06-01

    Full Text Available El presente trabajo describe una arquitectura orientada a servicios para un software que tiene como objetivo facilitar la implementación de un Proceso Personal de Software en un equipo de desarrollo u organización. Entre las características que posee este software y que son relevantes de mencionar están las de entregar extensibilidad e independencia, esto se ve reflejado en la facilidad para agregar nuevas herramientas al proceso de desarrollo de software integradas al Proceso Personal de Software con un máximo de independencia de sistemas operativos y lenguajes de programación. El software implementado realiza la recolección de los datos necesarios para el Proceso Personal de Software casi completamente automática, considerando que el administrador solamente clasifica los errores que pueden ocurrir cuando se utiliza algún lenguaje de programación en particular, entre otras pequeñas tareas. Esta facilidad de uso hace que la implementación del Proceso Personal de Software se realice exitosamente con un bajo esfuerzo requerido por los integrantes del equipo de desarrollo.This work describes a service oriented architecture of a software application that facilitates the implementation of the Personal Software Process by a development team or an organization. Some of the characteristics of this software and which are important to mention are extensibility and technical environment independence. These characteristics facilitate the process of adding new tools to the software development process integrating them to the Personal Software Process independently of the operating systems and programming languages being used. The implemented software undertakes the data collection necessary to the Personal Software Process almost automatically, since the administrator must only classify the errors that may occur when a particular programming language is used, among other small tasks. This ease of use approach helps to make the implementation of

  13. Interaction design concepts for a mobile personal assistant

    NARCIS (Netherlands)

    Nagata, S.F.; Oostendorp, H. van; Neerincx, M.A.

    2004-01-01

    The Personal Assistant for onLine Services (PALS) project aims to develop an intelligent interface that facilitates efficient user interaction through personalization and context awareness with commerce web sites on a handheld device. The types of assistance services and interaction support

  14. Comparison of Ion Personal Genome Machine Platforms for the Detection of Variants in BRCA1 and BRCA2.

    Science.gov (United States)

    Hwang, Sang Mee; Lee, Ki Chan; Lee, Min Seob; Park, Kyoung Un

    2018-01-01

    Transition to next generation sequencing (NGS) for BRCA1 / BRCA2 analysis in clinical laboratories is ongoing but different platforms and/or data analysis pipelines give different results resulting in difficulties in implementation. We have evaluated the Ion Personal Genome Machine (PGM) Platforms (Ion PGM, Ion PGM Dx, Thermo Fisher Scientific) for the analysis of BRCA1 /2. The results of Ion PGM with OTG-snpcaller, a pipeline based on Torrent mapping alignment program and Genome Analysis Toolkit, from 75 clinical samples and 14 reference DNA samples were compared with Sanger sequencing for BRCA1 / BRCA2 . Ten clinical samples and 14 reference DNA samples were additionally sequenced by Ion PGM Dx with Torrent Suite. Fifty types of variants including 18 pathogenic or variants of unknown significance were identified from 75 clinical samples and known variants of the reference samples were confirmed by Sanger sequencing and/or NGS. One false-negative results were present for Ion PGM/OTG-snpcaller for an indel variant misidentified as a single nucleotide variant. However, eight discordant results were present for Ion PGM Dx/Torrent Suite with both false-positive and -negative results. A 40-bp deletion, a 4-bp deletion and a 1-bp deletion variant was not called and a false-positive deletion was identified. Four other variants were misidentified as another variant. Ion PGM/OTG-snpcaller showed acceptable performance with good concordance with Sanger sequencing. However, Ion PGM Dx/Torrent Suite showed many discrepant results not suitable for use in a clinical laboratory, requiring further optimization of the data analysis for calling variants.

  15. Promoting synergistic research and education in genomics and bioinformatics.

    Science.gov (United States)

    Yang, Jack Y; Yang, Mary Qu; Zhu, Mengxia Michelle; Arabnia, Hamid R; Deng, Youping

    2008-01-01

    Bioinformatics and Genomics are closely related disciplines that hold great promises for the advancement of research and development in complex biomedical systems, as well as public health, drug design, comparative genomics, personalized medicine and so on. Research and development in these two important areas are impacting the science and technology.High throughput sequencing and molecular imaging technologies marked the beginning of a new era for modern translational medicine and personalized healthcare. The impact of having the human sequence and personalized digital images in hand has also created tremendous demands of developing powerful supercomputing, statistical learning and artificial intelligence approaches to handle the massive bioinformatics and personalized healthcare data, which will obviously have a profound effect on how biomedical research will be conducted toward the improvement of human health and prolonging of human life in the future. The International Society of Intelligent Biological Medicine (http://www.isibm.org) and its official journals, the International Journal of Functional Informatics and Personalized Medicine (http://www.inderscience.com/ijfipm) and the International Journal of Computational Biology and Drug Design (http://www.inderscience.com/ijcbdd) in collaboration with International Conference on Bioinformatics and Computational Biology (Biocomp), touch tomorrow's bioinformatics and personalized medicine throughout today's efforts in promoting the research, education and awareness of the upcoming integrated inter/multidisciplinary field. The 2007 international conference on Bioinformatics and Computational Biology (BIOCOMP07) was held in Las Vegas, the United States of American on June 25-28, 2007. The conference attracted over 400 papers, covering broad research areas in the genomics, biomedicine and bioinformatics. The Biocomp 2007 provides a common platform for the cross fertilization of ideas, and to help shape knowledge and

  16. Agent-based Personal Network (PN) service architecture

    DEFF Research Database (Denmark)

    Jiang, Bo; Olesen, Henning

    2004-01-01

    In this paper we proposte a new concept for a centralized agent system as the solution for the PN service architecture, which aims to efficiently control and manage the PN resources and enable the PN based services to run seamlessly over different networks and devices. The working principle...

  17. Use of Transnational Services to Prevent Treatment Interruption in Tuberculosis-Infected Persons Who Leave the United States.

    Science.gov (United States)

    Tschampl, Cynthia A; Garnick, Deborah W; Zuroweste, Edward; Razavi, Moaven; Shepard, Donald S

    2016-03-01

    A major problem resulting from interrupted tuberculosis (TB) treatment is the development of drug-resistant TB, including multidrug-resistant TB (MDR TB), a more deadly and costly-to-treat form of the disease. Global health systems are not equipped to diagnose and treat the current burden of MDR TB. TB-infected foreign visitors and temporary US residents who leave the country during treatment can experience treatment interruption and, thus, are at greater risk for drug-resistant TB. Using epidemiologic and demographic data, we estimated TB incidence among this group, as well as the proportion of patients referred to transnational care-continuity and management services during relocation; each year, ≈2,827 visitors and temporary residents are at risk for TB treatment interruption, 222 (8%) of whom are referred for transnational services. Scale up of transnational services for persons at high risk for treatment interruption is possible and encouraged because of potential health gains and reductions in healthcare costs for the United States and receiving countries.

  18. A Framework for Exploiting Internet of Things for Context-Aware Trust-Based Personalized Services

    Directory of Open Access Journals (Sweden)

    Abayomi Otebolaku

    2018-01-01

    Full Text Available In the last years, we have witnessed the introduction of the Internet of Things (IoT as an integral part of the Internet with billions of interconnected and addressable everyday objects. On one hand, these objects generate a massive volume of data that can be exploited to gain useful insights into our day-to-day needs. On the other hand, context-aware recommender systems (CARSs are intelligent systems that assist users to make service consumption choices that satisfy their preferences based on their contextual situations. However, one of the key challenges facing the development and deployment of CARSs is the lack of functionality for providing dynamic and reliable context information required by the recommendation decision process. Thus, data obtained from IoT objects and other sources can be exploited to build CARSs that satisfy users’ preferences, improve quality of experience, and boost recommendation accuracy. This article describes various components of a conceptual IoT-based framework for context-aware personalized recommendations. The framework addresses the weakness whereby CARSs rely on static and limited contexts from user’s mobile phone by providing additional components for reliable and dynamic context information, using IoT context sources. The core of the framework consists of a context classification and reasoning management and a dynamic user profile model, incorporating trust to improve the accuracy of context-aware personalized recommendations. Experimental evaluations show that incorporating context and trust into personalized recommendation process can improve accuracy.

  19. Comprehensive HIV Prevention for Transgender Persons.

    Science.gov (United States)

    Neumann, Mary Spink; Finlayson, Teresa J; Pitts, Nicole L; Keatley, JoAnne

    2017-02-01

    Transgender persons are at high risk for HIV infection, but prevention efforts specifically targeting these people have been minimal. Part of the challenge of HIV prevention for transgender populations is that numerous individual, interpersonal, social, and structural factors contribute to their risk. By combining HIV prevention services with complementary medical, legal, and psychosocial services, transgender persons' HIV risk behaviors, risk determinants, and overall health can be affected simultaneously. For maximum health impact, comprehensive HIV prevention for transgender persons warrants efforts targeted to various impact levels-socioeconomic factors, decision-making contexts, long-lasting protections, clinical interventions, and counseling and education. We present current HIV prevention efforts that reach transgender persons and present others for future consideration.

  20. 42 CFR 93.218 - Person.

    Science.gov (United States)

    2010-10-01

    ... 42 Public Health 1 2010-10-01 2010-10-01 false Person. 93.218 Section 93.218 Public Health PUBLIC HEALTH SERVICE, DEPARTMENT OF HEALTH AND HUMAN SERVICES HEALTH ASSESSMENTS AND HEALTH EFFECTS STUDIES OF HAZARDOUS SUBSTANCES RELEASES AND FACILITIES PUBLIC HEALTH SERVICE POLICIES ON RESEARCH MISCONDUCT...