Allocation of Resources to Communication of Research Result Summaries: Biobank Participant Perspectives

作者：Richards Julie E^*; Bane Emmi; Fullerton Stephanie M; Ludman Evette J; Jarvik Gail

来源：Journal of Empirical Research on Human Research Ethics, 2016, 11(4): 364-369.

DOI：10.1177/1556264616667126

• data sharing
• biobank
• aggregate results
• allocation of resources

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.

• 出版日期2016-10