Is it ethical to deny genetic research participants individualised results?

2009 ◽  
Vol 35 (4) ◽  
pp. 209-213 ◽  
Author(s):  
P Affleck
Keyword(s):  
Genetic Research ◽  
Research Participants

scholarly journals “Stop Talking to People; Talk with Them”: A Qualitative Study of Information Needs and Experiences Among Genetic Research Participants in Pakistan and Denmark

2018 ◽  
Vol 14 (1) ◽  
pp. 3-14 ◽  
Author(s):  
Zainab Afshan Sheikh ◽  
Klaus Hoeyer
Keyword(s):  
Qualitative Study ◽  
Information Exchange ◽  
Information Needs ◽  
Research Collaboration ◽  
Genetic Research ◽  
Research Participation ◽  
Research Participants ◽  
Mutual Engagement ◽  
Information Practices ◽  
Types Of Information

This article explores how research participants experienced information practices in an international genetic research collaboration involving the collection of biomaterial and clinical data in both Pakistan and Denmark. We investigated how people make sense of their research participation and the types of information they need and desire. We found great variation in what information exchange does and what participants experience as meaningful. For example, information practices could serve as a source of respect and recognition (in Denmark) or of hope, understanding or help when dealing with suffering (in Pakistan). Policies aimed at harmonizing ethics standards for international research do not encapsulate some of the most important aspects of information practices for the research participants involved. We suggest shifting the focus from standards of one-way information delivery to a more process-oriented form of research ethics, where the contextual exploration of local needs through a mutual engagement with participants gains more ground.

Does a Duty of Disclosure Foster Special Treatment of Genetic Research Participants?

2013 ◽  
Vol 22 (5) ◽  
pp. 654-661 ◽  
Author(s):  
Robin Z. Hayeems ◽  
Fiona A. Miller ◽  
Jessica P. Bytautas ◽  
Li Li
Keyword(s):  
Genetic Research ◽  
Special Treatment ◽  
Research Participants

scholarly journals Ethics and psychiatric genetics: is it ethical to test for ‘depression genes’?

2004 ◽  
Vol 28 (8) ◽  
pp. 279-280 ◽  
Author(s):  
John Wallace
Keyword(s):  
Subject Matter ◽  
Ethical Issues ◽  
Genetic Research ◽  
Psychiatric Genetics ◽  
Human Beings ◽  
Ethical Challenges ◽  
Modifying Genes ◽  
Research Participants ◽  
The Core ◽  
The Future

Only one fact is certain about the future of genetic research: it will continue to raise ethical challenges for scientists, research participants, clinicians and patients (Faraone et al, 1999). Ethical issues are of concern in all branches of medicine and genetics, but they are of particular concern in the field of psychiatric genetics. This is because of the special nature of psychiatry, and its position at the intersection of the disciplines of psychology, sociology and medicine. The concern is also related to the perceived subject matter of psychiatry: the core thoughts, feelings and emotions by which we define ourselves as human beings. Many are perturbed by the idea that modifying genes could modify these features. By ‘interfering’ with our genetic heritage, it is perceived that our essential humanity is coming under threat, and the possible outcomes of this interference are worryingly unknown.

The Return of Results of Deceased Research Participants

2011 ◽  
Vol 39 (4) ◽  
pp. 621-630 ◽  
Author(s):  
Anne Marie Tassé
Keyword(s):  
Population Studies ◽  
Genetic Research ◽  
Family Members ◽  
Research Participant ◽  
Return Of Results ◽  
Research Results ◽  
Research Participants ◽  
Related Family ◽  
Ethical And Legal Issues

Until the mid-20th century, biomedical research centered on the study of specific diseases, concerned with short periods of time and small groups of living research participants. However, the growth of longitudinal population studies and long-term biobanking now forces the research community to examine the possibility of the death of their research participants.The death of a research participant raises numerous ethical and legal issues, including the return of deceased individuals’ research results to related family members. As with the return of individual research results for living research participants, the question of the obligation to return a deceased person’s research results to family members has yet to be settled. This question is particularly acute in the context of genetic research since the research results from one individual may have health implications for all biological relatives.

scholarly journals Studying Genetic Research Participants: Lessons from the “Learning About Research in North Carolina” Study

2008 ◽  
Vol 17 (8) ◽  
pp. 2019-2024 ◽  
Author(s):  
Giselle Corbie-Smith ◽  
Connie Blumenthal ◽  
Gail Henderson ◽  
Joanne Garrett ◽  
Jada Bussey-Jones ◽  
...  
Keyword(s):  
North Carolina ◽  
Genetic Research ◽  
Research Participants

Editorial

2006 ◽  
Vol 3 (5) ◽  
Author(s):  
Tade M Spranger
Keyword(s):  
Informed Consent ◽  
Case Studies ◽  
Biomedical Research ◽  
Genetic Research ◽  
Research Participants ◽  
Legal Questions

AbstractBiomedical research raises manifold ethical and legal questions. Matthew Rimmer's article considers whether the granting of patents in respect of biomedical genetic research should be conditional upon the informed consent of research participants. He focuses upon several case studies like

scholarly journals Stakeholders’ perspectives on the post-mortem use of genetic and health-related data for research: a systematic review

2019 ◽  
Vol 28 (4) ◽  
pp. 403-416 ◽  
Author(s):  
Marieke A. R. Bak ◽  
M. Corrette Ploem ◽  
Hakan Ateşyürek ◽  
Marieke T. Blom ◽  
Hanno L. Tan ◽  
...  
Keyword(s):  
Systematic Review ◽  
Medical Research ◽  
Genetic Research ◽  
Personal Data ◽  
Future Research ◽  
Post Mortem ◽  
Research Participants ◽  
Related Data ◽  
Use Of Data ◽  
Institutional Review

Abstract The majority of biobank policies and consent forms do not address post-mortem use of data for medical research, thus causing uncertainty after research participants’ death. This systematic review identifies studies examining stakeholders’ perspectives on this issue. We conducted a search in MEDLINE, CINAHL, EMBASE and Web of Science. Findings were categorised in two themes: (1) views on the use of data for medical research after participants’ death, and (2) perspectives regarding the post-mortem return of individual genetic research results. An important subtheme was the appropriate authority and degree of control over posthumous use of data. The sixteen included studies all focused on genetic data and used quantitative and qualitative methods to survey perspectives of research participants, family members, researchers and Institutional Review Board members. Acceptability of post-mortem use of data for medical research was high among research participants and their relatives. Most stakeholders thought participants should be informed about post-mortem research uses during initial consent. Between lay persons and professionals, disagreement exists about whether relatives should receive actionable genetic findings, and whether the deceased’s previous preferences can be overridden. We conclude that regulations and ethical guidance should leave room for post-mortem use of personal data for research, provided that informed consent procedures are transparent on this issue, including the return of individual research findings to relatives. Future research is needed to explore underlying causes for differences in views, as well as ethical and legal issues on the appropriate level of control by deceased research participants (while alive) and their relatives.

scholarly journals Preferences for Return of Genetic Results Among Participants in the Jackson Heart Study and Framingham Heart Study

2019 ◽  
Vol 12 (12) ◽  
Author(s):  
Steven Joffe ◽  
Deborah E. Sellers ◽  
Lynette Ekunwe ◽  
Donna Antoine-Lavigne ◽  
Sarah McGraw ◽  
...  
Keyword(s):  
Genetic Testing ◽  
Framingham Heart Study ◽  
Absolute Risk ◽  
Genetic Research ◽  
Jackson Heart Study ◽  
Research Participants ◽  
Positive Attitudes ◽  
Heart Study ◽  
Younger Age ◽  
Genetic Results

Background: Surveys suggest that most research participants desire access to secondary (incidental) genomic findings. However, few studies clarify whether preferences vary by the nature of the finding. Methods: We surveyed members of the JHS (Jackson Heart Study, n=960), the FHS (Framingham Heart Study; n=955), and African American members of the FHS Omni cohort (n=160) who had consented to genomic studies. Each factorial survey included 3 vignettes, randomly selected from a set of 64, that described a secondary genomic result. Vignettes varied systematically by 5 factors identified by expert panels as salient: phenotype severity, actionability (preventability), reproductive significance, and relative and absolute risk of the phenotype. Respondents indicated whether they would want to receive the result. Data were analyzed separately by cohort using generalized linear mixed models. Results: Response rates ranged from 67% to 73%. Across vignettes, 88% to 92% of respondents would definitely or probably want to learn the result. In multivariate analyses among JHS respondents, desire for results was associated with positive attitudes towards genetic testing, lower education, higher subjective numeracy, and younger age, but not with any of the 5 factors. Among FHS respondents, desire for results was associated with higher absolute risk, preventability, reproductive risk, and positive attitudes towards genetic testing. Among FHS Omni respondents, desire for results was associated with positive attitudes towards genetic testing and younger age. Conclusions: Most genetic research participants desire return of secondary genetic results. Several factors identified by expert panels as salient are associated with preferences among FHS, but not JHS or FHS Omni, participants.

scholarly journals Reporting Genetic Findings to Individual Research Participants: Guidelines From the Swiss Personalized Health Network

2020 ◽  
Vol 11 ◽  
Author(s):  
Alessandro Blasimme ◽  
Caroline Brall ◽  
Effy Vayena
Keyword(s):  
Expert Panel ◽  
Private Insurance ◽  
Genetic Research ◽  
Advisory Group ◽  
University Hospitals ◽  
Data Infrastructure ◽  
Health Network ◽  
Research Participants ◽  
Research Findings ◽  
Personalized Health

In 2017 the Swiss federal government established the Swiss Personalized Health Network (SPHN), a nationally coordinated data infrastructure for genetic research. The SPHN advisory group on Ethical, Legal, and Social Implications (ELSI) was tasked with the creation of a recommendation to ensure ethically responsible reporting of genetic research findings to research participants in SPHN-funded studies. Following consultations with expert stakeholders, including geneticists, pediatricians, sociologists, university hospitals directors, patient representatives, consumer protection associations, and insurers, the ELSI advisory group issued its recommendation on “Reporting actionable genetic findings to research participants” in May 2020. In this paper we outline the development of this recommendation and the provisions it contains. In particular, we discuss some of its key features, namely: (1) that participation in SPHN-funded studies as a research subject is conditional to accepting that medically relevant genetic research findings will be reported; (2) that a Multidisciplinary Expert Panel (MEP) should be created to support researchers’ decision-making processes about reporting individual genetic research findings; (3) that such Multidisciplinary Expert Panel will make case-by-case decisions about whether to allow reporting of genetic findings, instead of relying on a pre-defined list of medically relevant variants; (4) that research participants shall be informed of the need to disclose genetic mutations when applying for private insurance, which may influence individual decisions about participation in research. By providing an account of the procedural background and considerations leading to the SPHN recommendation on “Reporting actionable genetic findings to research participants,” we seek to promote a better understanding of the proposed guidance, as well as to contribute to the global dialog on the reporting of genetic research findings.

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