Public preferences for the return of research results in genetic research

Abstract

Purpose:Recent policies specifying criteria about which individual research results to return leave considerable discretion to researchers. This study investigated the types of results that the public wants when participating in genetic research and whether preferences differ based on willingness to participate.Methods:A representative survey of US adults used conjoint analysis to measure priorities among eight principles of a results policy for a proposed large-cohort study. Policy preferences were measured using 12 tasks in which respondents chose between two groupings of the policy principles. Stratified analysis compared those self-identified as likely or unlikely to participate in genomic research.Results:Of 1,515 respondents, 56% would participate in the proposed study. All eight principles were positively endorsed by participants (all P < 0.003), with priority placed on providing results at no cost and returning well-validated results for treatable and serious diseases. Providing detailed result reports was more highly valued than providing staff to explain results (P = 0.0005). Receiving results about major changes in risk was marginally disvalued by those unlikely to participate (P = 0.35).Conclusion:Public preferences for well-validated individual research results for serious, actionable diseases agree with emerging recommendations. However, because preferences for receiving individual research results vary, some choices should be offered to research participants.Genet Med advance online publication 22 May 2014Genetics in Medicine (2014); doi:10.1038/gim.2014.50