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

J Law Med Ethics. Fall 2015;43(3):502-13. doi: 10.1111/jlme.12292.


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.

Publication types

  • Research Support, N.I.H., Extramural

MeSH terms

  • Disclosure / ethics*
  • Ethics Committees, Research*
  • Family*
  • Female
  • Genetic Research / ethics*
  • Humans
  • Male
  • Middle Aged
  • Research Subjects*
  • Surveys and Questionnaires