Return of Genetic Research Results to Participants and Families: IRB Perspectives and Roles.
Ontology highlight
ABSTRACT:
SUBMITTER: Beskow LM
PROVIDER: S-EPMC4617597 | biostudies-other | 2015
REPOSITORIES: biostudies-other
Publications
Return of Genetic Research Results to Participants and Families: IRB Perspectives and Roles.
Beskow Laura M LM O'Rourke P Pearl PP
The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics 20150101 3
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 ...[more]
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