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

Laura M Beskow; P Pearl O'Rourke

doi:10.1111/jlme.12292

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

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

Authors

Laura M Beskow¹, P Pearl O'Rourke²

Affiliations

¹ Associate Professor at the Duke University School of Medicine and Duke Clinical Research Institute, where her work focuses on ethics and policy issues in biomedical research - particularly human subjects issues in large-scale genomic and translational research. She holds a B.S. in nutrition from Iowa State University, an M.P.H. with a concentration in health law from Boston University, and a Ph.D. in health policy and administration from the University of North Carolina at Chapel Hill.
² 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.

Abstract

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

Abstract

Publication types

MeSH terms

Grants and funding