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 due to perceptions of low utility. We investigated the personal utility in PD GENEration and how results lead to enrollment in additional research studies. Participants (n = 972) underwent genetic testing, results disclosure, genetic counseling, and completed a survey examining the perceived personal utility of their results and interest in participating in additional studies. Most participants found their genetic test results useful, including satisfying curiosity (81%), feeling good about helping the medical community (80%), and having information to share with family (77%). There were no significant differences in responses based on result type. Forty-five percent of participants expressed interest in participating i

SUBMITTER: Oas H 

PROVIDER: S-EPMC11511990 | biostudies-literature | 2024 Oct

REPOSITORIES: biostudies-literature