Participant-reported personal utility of genetic testing for Parkinson’s disease and interest in clinical trial participation

Abstract Genetic testing for Parkinson’s disease (PD) is infrequently performed in clinical settings due to providers’ perception of low utility, yet patients may find the results useful. We investigated the reported personal utility of genetic testing for PD as part of the PD GENEration study, in which genetic testing and counseling are provided at no cost to participants. We also investigated how genetic test results may encourage enrollment in additional research studies. In the PD GENEration study, PwP underwent genetic testing for seven genes associated with PD and received genetic counseling to discuss results. Participants (n=972) completed a survey examining the perceived personal utility of their results and interest in participating in additional research studies. Most participants found their genetic test results useful in several ways, including satisfying their curiosity (81% of participants), feeling good about helping the medical community (80%), and having information to share with family (77%). There were no significant differences in perceived personal utility between gene-positive and gene-negative participants. Forty-five percent of all participants expressed interest in participating in additional research studies and 16% of all participants confirmed enrollment in other studies. Our results suggest that participants find personal utility in genetic testing regardless of results. Although participants may be interested in enrolling in additional research, they may need more support and resources to do so.