Return of Genetic Research Results to Participants and Families: IRB Perspectives and Roles

Journal of Law, Medicine and Ethics 43 (3):502-513 (2015)
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We surveyed IRB chairs' perspectives on offering individual genetic research results to participants and families, including family members of deceased participants, and the IRB's role in addressing these issues. Given a particular hypothetical scenario, respondents favored offering results to participants but not family members, giving choices at the time of initial consent, and honoring elicited choices. They felt IRBs should have authority regarding the process issues, but a more limited role in medical and scientific issues



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