Open AccessReturn of Genetic Research Results to Participants and Families: IRB Perspectives and Roles
Author(s) -
Beskow Laura M.,
O'Rourke P. Pearl
Publication year - 2015
Publication title -
the journal of law, medicine & ethics
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.515
H-Index - 57
eISSN - 1748-720X
pISSN - 1073-1105
DOI - 10.1111/jlme.12292
Subject(s) - clarity , subject (documents) , informed consent , psychology , social psychology , medicine , computer science , alternative medicine , biology , biochemistry , pathology , library science
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.