Researcher perspectives on disclosure of incidental findings in genetic research.

摘要: Genetic research can produce information that is beyond the aims of study yet may be clinical or personal interest to participants. We conducted semi-structured interviews with 44 researchers who were asked describe how they would respond a hypothetical vignette regarding disclosure findings unanticipated significance Interviews transcribed and analyzed using content thematic analyses. Researchers' decision-making processes about whether disclose incidental governed by potentially conflicting duties in three primary domains: quality, adherence rules, participant welfare. There are several actions take prepare for findings, including: adding specific language informed consent documents state clearly investigators will handle disclosure; exploring prepared participants might during process make decisions like approached event findings; developing procedures appropriately communicating individual results providing follow-up support based on preferences; and, genetic research, having an awareness range traits expressed genes under study.