title: Return of Genetic Research Results to Participants and Families: IRB Perspectives and Roles.
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.
authors.affiliation: 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.
authors.forename: Laura M
authors.initials: LM
authors.lastname: Beskow
authors.affiliation: 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.
authors.forename: P Pearl
authors.initials: PP
authors.lastname: O'Rourke
mesh_terms: D030881:Disclosure / Q000941:ethics*; D028744:Ethics Committees, Research; D005190:Family; D005260:Female; D036281:Genetic Research / Q000941:ethics*; D006801:Humans; D008297:Male; D008875:Middle Aged; D035842:Research Subjects; D011795:Surveys and Questionnaires