title: Institutional review board perspectives on obligations to disclose genetic incidental findings to research participants.
abstract: Researchers' obligations to disclose genetic incidental findings (GIFs) have been widely debated, but there has been little empirical study of the engagement of institutional review boards (IRBs) with this issue.
  
  
  
  This article presents data from the first extensive (n = 796) national survey of IRB professionals' understanding of, experience with, and beliefs surrounding GIFs.
  
  
  
  Most respondents had dealt with questions about GIFs (74%), but only a minority (47%) felt prepared to address them. Although a majority believed that there is an obligation to disclose GIFs (78%), there is still not consensus about the supporting ethical principles. Respondents generally did not endorse the idea that researchers' additional time and effort (7%), and lack of resources (29%), were valid reasons for diminishing a putative obligation. Most (96%) supported a right not to know, but this view became less pronounced (63%) when framed in terms of specific case studies.
  
  
  
  IRBs are actively engaged with GIFs but have not yet reached consensus. Respondents were uncomfortable with arguments that could be used to limit an obligation to return GIFs. This could indicate that IRBs are providing some of the impetus for the trend toward returning GIFs, although questions remain about the relative contribution of other stakeholders.Genet Med 18 7, 705-711.
authors.affiliation: David Geffen School of Medicine at UCLA, Los Angeles, California, USA.|Department of Bioethics, Clinical Center, National Institutes of Health, Bethesda, Maryland, USA.
authors.forename: Catherine
authors.identifier: 0000-0002-8903-3823
authors.initials: C
authors.lastname: Gliwa
authors.affiliation: Harvard Medical School, Boston, Massachusetts, USA.
authors.forename: Ilana R
authors.initials: IR
authors.lastname: Yurkiewicz
authors.affiliation: Department of Medicine, Brigham and Women's Hospital, Boston, Massachusetts, USA.|Department of Global Health and Social Medicine, Harvard Medical School, Boston, Massachusetts, USA.|Department of Health Policy and Management, Harvard T.H. Chan School of Public Health, Boston, Massachusetts, USA.
authors.forename: Lisa Soleymani
authors.identifier: 0000-0001-8779-1244
authors.initials: LS
authors.lastname: Lehmann
authors.affiliation: Department of Bioethics, Clinical Center, National Institutes of Health, Bethesda, Maryland, USA.|Bioethics Core, National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland, USA.
authors.forename: Sara Chandros
authors.identifier: 0000-0001-8742-4997
authors.initials: SC
authors.lastname: Hull
authors.affiliation: University of Wisconsin Survey Center, Madison, Wisconsin, USA.
authors.forename: Nathan
authors.initials: N
authors.lastname: Jones
authors.affiliation: Department of Bioethics, Clinical Center, National Institutes of Health, Bethesda, Maryland, USA.|Bioethics Core, National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland, USA.
authors.forename: Benjamin E
authors.identifier: 0000-0002-9098-0799
authors.initials: BE
authors.lastname: Berkman
mesh_terms: D030881:Disclosure / Q000941:ethics*; D028744:Ethics Committees, Research; D032984:Ethics, Research; D036281:Genetic Research / Q000941:ethics*; D006801:Humans; D033162:Incidental Findings; D007258:Informed Consent / Q000941:ethics; D012108:Research Personnel / Q000941:ethics