Public preferences regarding the return of individual genetic research results: findings from a qualitative focus group study

Abstract

Purpose: People are interested in receiving their individual research results in exchange for participating in genetic research. However, it is unclear whether the public understands the nature and limitations of these results and whether they would want information with unknown clinical utility.

Methods: We conducted 10 focus groups in three US cities to examine the types of results people would want and the perceived value of different types of individual research results.

Results: Nearly all focus group participants said they would want at least some individual research results returned. Priority was placed on results that are well understood. Less important to participants were the magnitude of the risk conferred and actionability of the result. In addition to helping treat or prevent disease, participants identified several other potential health-related and personal reasons for wanting individual research results. Many believed that researchers have an obligation to return individual research results. Although most people would prefer to receive as much information as possible, many would accept the return of a limited set of results.

Conclusion: Participants understood the nuances and limitations of individual research results. Researchers deciding the value of returning a given result should consider using a broader definition of clinical utility as well as the possible personal utility of the information.