Publication Abstract

Authors: Richards JE, Bane E, Fullerton SM, Ludman EJ, Jarvik G

Title: Allocation of Resources to Communication of Research Result Summaries.

Journal: J Empir Res Hum Res Ethics 11(4):364-369

Date: 2016 Oct

Abstract: Researchers and policymakers recommend communicating summary research results to biobank participants when feasible. To date, however, there have been few explorations of participant preferences for dedicating resources to this activity. Fifteen semi-structured interviews were conducted with participants of a genetic medicine biobank. Participants were interviewed by phone about their motivation for participation, and opinions about the allocation of resources to communicating summary results. De-identified transcripts were used for a directed content analysis. Most biobank participation was altruistic. All participants were not only interested in receiving summary results but also expressed a clear preference for allocating limited funds to conducting additional genetic research. The results suggest that participants have a nuanced view about the allocation of biobank resources to returning summary results, and asking their opinion is a valuable exercise. Researchers may benefit from transparency about research goals and involving biobank participants in decisions about return of summary results.