title: Researcher perspectives on disclosure of incidental findings in genetic research.
abstract: Genetic research can produce information that is beyond the aims of the research study yet may be of clinical or personal interest to study participants. We conducted semi-structured interviews with 44 researchers who were asked to describe how they would respond to a hypothetical vignette regarding the disclosure of findings with unanticipated clinical significance to research study participants. Interviews were transcribed and analyzed using content and thematic analyses. Researchers' decision-making processes about whether to disclose incidental findings were governed by potentially conflicting duties in three primary domains: information quality, adherence to rules, and participant welfare. There are several actions researchers can take to prepare for incidental findings, including: adding specific language in informed consent documents to state clearly how investigators will handle disclosure; exploring how prepared participants might be during the consent process to make decisions about how they would like to be approached in the event of incidental findings; developing procedures for appropriately communicating individual results and providing follow-up support based on participant preferences; and, in genetic research, having an awareness of the range of traits expressed by the genes under study.
authors.affiliation: University of Washington's Institute of Public Health Genetics Master of Public Health program, Seattle, WA 98195-7120, USA.
authors.forename: Meredith C
authors.initials: MC
authors.lastname: Meacham
authors.forename: Helene
authors.initials: H
authors.lastname: Starks
authors.forename: Wylie
authors.initials: W
authors.lastname: Burke
authors.forename: Kelly
authors.initials: K
authors.lastname: Edwards
mesh_terms: D003657:Decision Making / Q000941:ethics; D030881:Disclosure / Q000941:ethics*; D005260:Female; D036281:Genetic Research / Q000941:ethics*; D019983:Guideline Adherence; D006801:Humans; D033162:Incidental Findings; D008297:Male; D011340:Problem Solving; D036301:Qualitative Research; D014481:United States