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

J Law Med Ethics

Director of Human Research Affairs at Partners HealthCare in Boston. She is an Associate Professor of Pediatrics at Harvard Medical School. She received her B.A. from Yale University, and completed medical school at Dartmouth Medical School and the University of Minnesota Medical School.

Published: January 2017

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.

Download full-text PDF

Source
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4617597PMC
http://dx.doi.org/10.1111/jlme.12292DOI Listing

Publication Analysis

Top Keywords

genetic participants
8
participants families
8
family members
8
return genetic
4
participants
4
families irb
4
irb perspectives
4
perspectives roles
4
roles surveyed
4
surveyed irb
4

Similar Publications

Want AI Summaries of new PubMed Abstracts delivered to your In-box?

Enter search terms and have AI summaries delivered each week - change queries or unsubscribe any time!