ArticleGenetics in medicine : official journal of the American College of Medical Genetics2016
Institutional review board perspectives on obligations to disclose genetic incidental findings to research participants.
Article in Genetics in medicine : official journal of the American College of Medical Genetics, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 16 papers, 1 of them a synthesis that pooled it.
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Who cites it
16 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Return of individual research results from genomic research: A systematic review of stakeholder perspectives.PloS one · 2021Pooled it
- Return of Participants' Incidental Genetic Research Findings: Experience from a Case-Control Study of Asthma in an American Indian Community.Journal of personalized medicine · 2023Article
- Return of Participants' Incidental Genetic Research Findings: Experience from a Case-Control Study of Asthma in an American Indian Community.Research square · 2023Article
- Responding to signals of mental and behavioral health risk in pragmatic clinical trials: Ethical obligations in a healthcare ecosystem.Contemporary clinical trials · 2022Article
- Perspectives and experiences of researchers regarding feedback of incidental genomic research findings: A qualitative study.PloS one · 2022Article
- Exploring the motivations of research participants who chose not to learn medically actionable secondary genetic findings about themselves.Genetics in medicine : official journal of the American College of Medical Genetics · 2021Article
- Australian human research ethics committee members' confidence in reviewing genomic research applications.European journal of human genetics : EJHG · 2021Article
- Taking it to the bank: the ethical management of individual findings arising in secondary research.Journal of medical ethics · 2021Article
- Why genomics researchers are sometimes morally required to hunt for secondary findings.BMC medical ethics · 2020Article
- Ethics and Collateral Findings in Pragmatic Clinical Trials.The American journal of bioethics : AJOB · 2020Article
- Strategies to Guide the Return of Genomic Research Findings: An Australian Perspective.Journal of bioethical inquiry · 2018Article
- Germline mutations in BRCA1 and BRCA2 incidentally revealed in a biobank research study: experiences from re-contacting mutation carriers and relatives.Journal of community genetics · 2018Article
- Controversies among Cancer Registry Participants, Genomic Researchers, and Institutional Review Boards about Returning Participants' Genomic Results.Public health genomics · 2018Article
- Pathogenic variants in the healthy elderly: unique ethical and practical challenges.Journal of medical ethics · 2017Article
- REFUTING THE RIGHT NOT TO KNOW.Journal of health care law & policy · 2017Article
- Return of individual genomic research results: what do consent forms tell participants?European journal of human genetics : EJHG · 2016Article
Corrections and comments
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Authors and funding
6 authors.
Funding
Abstract
purposeResearchers' obligations to disclose genetic incidental findings (GIFs) have been widely debated, but there has been little empirical study of the engagement of institutional review boards (IRBs) with this issue.
methodsThis article presents data from the first extensive (n = 796) national survey of IRB professionals' understanding of, experience with, and beliefs surrounding GIFs.
resultsMost respondents had dealt with questions about GIFs (74%), but only a minority (47%) felt prepared to address them. Although a majority believed that there is an obligation to disclose GIFs (78%), there is still not consensus about the supporting ethical principles. Respondents generally did not endorse the idea that researchers' additional time and effort (7%), and lack of resources (29%), were valid reasons for diminishing a putative obligation. Most (96%) supported a right not to know, but this view became less pronounced (63%) when framed in terms of specific case studies.
conclusionsIRBs are actively engaged with GIFs but have not yet reached consensus. Respondents were uncomfortable with arguments that could be used to limit an obligation to return GIFs. This could indicate that IRBs are providing some of the impetus for the trend toward returning GIFs, although questions remain about the relative contribution of other stakeholders.Genet Med 18 7, 705-711.
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