Researcher Perspectives on Disclosure of Incidental Findings in Genetic Research

In: Journal of empirical research on human research ethics: JERHRE ; an international journal, Band 5, Heft 3, S. 31-41

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.