Return of Aggregate Results in Biorepository Research: An Exploratory Study of Participant Perspectives and Preferences

Abstract

This thesis reports a preliminary exploration of participant preferences and perspectives on the necessity for, and mode of, returning aggregate (or summary) results of genomic biorepository research. Fifteen semi-structured interviews were conducted with members of the Northwest Institute of Genetic Medicine (NWIGM) cohort. Participants reported a desire for individual results, and expressed a clear preference for allocating funds designated for return of summary results to additional research. In the event that aggregate results were to be returned, the participants of this exploratory study preferred to receive them in the form of emails, letters, or websites rather than in-person interviews or phone calls. The results of this preliminary research suggest that individuals be consulted regarding preferences prior to formation of overarching policy regarding aggregate return, and indicate that further research with larger and more representative cohorts is warranted.