Experiences and Attitudes of Genome Investigators Regarding Return of Individual Genetic Test Results

PURPOSE: Whether and how to return individual genetic results to study participants is among the most contentious policy issues in contemporary genomic research. METHODS: We surveyed corresponding authors of genome-wide association studies (GWAS), identified through the National Human Genome Research Institute's Catalog of Published GWAS, to describe the experiences and attitudes of these stakeholders. RESULTS: Of 357 corresponding authors, 200 (56%) responded. One hundred twenty-six (63%) had been responsible for primary data and sample collection, whereas 74 (37%) had performed secondary analyses. Only 7 (4%) had returned individual results within their index GWAS. Most (69%) believed that return of results to individual participants was warranted under at least some circumstances. Most respondents identified a desire to benefit participants's health (63%) and respect for participants's; desires for information (57%) as major motivations for returning results. Most also identified uncertain clinical utility (76%), the possibility that participants will misunderstand results (74%), the potential for emotional harm (61%), the need to ensure access to trained clinicians (59%), and the potential for loss of confidentiality (51%) as major barriers to return. CONCLUSION: Investigators have limited experience returning individual results from genome-scale research, yet most are motivated to do so in at least some circumstances.