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 in research studies; whereas 16% of participants confirmed enrollment. 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 support and resources.

由于人们认为帕金森病 （PD） 的基因检测效用低，因此很少进行。我们调查了 PD GENEration 中的个人效用以及结果如何导致参加其他研究。参与者 （n = 972） 接受了基因检测、结果披露、遗传咨询，并完成了一项调查，检查了他们结果的个人效用和参与其他研究的兴趣。大多数参与者发现他们的基因检测结果很有用，包括满足好奇心 （81%）、对帮助医学界感觉良好 （80%） 以及与家人分享信息 （77%）。基于结果类型的响应没有显著差异。45% 的参与者表示有兴趣参与研究;而 16% 的参与者确认入组。我们的结果表明，无论结果如何，参与者都会在基因检测中找到个人效用。尽管参与者可能有兴趣参加额外的研究，但他们可能需要支持和资源。