Participant-reported personal utility of genetic testing for Parkinson’s disease and interest in clinical trial participation
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.
Authors
- Anna Naito (ORCID: https://orcid.org/0000-0002-4812-071X)
- Roy N. Alcalay (ORCID: https://orcid.org/0000-0002-5717-4875)
- James C. Beck (ORCID: https://orcid.org/0000-0002-4884-9893)
- Ignacio Fernandez Mata (ORCID: https://orcid.org/0000-0003-1198-0633)
- Jennifer Verbrugge (ORCID: https://orcid.org/0000-0003-2778-2762)
- Laurence E. Walsh (ORCID: https://orcid.org/0000-0003-4623-1317)
- Tae-Hwi Linus Schwantes-An (ORCID: https://orcid.org/0000-0001-6387-0095)
- Anne‐Marie Wills (ORCID: https://orcid.org/0000-0002-0901-4711)
- Lola Cook (ORCID: https://orcid.org/0000-0001-6109-4598)
- MARTHA A. NANCE (ORCID: https://orcid.org/0000-0003-4994-8815)
- Hannah Oas
- Karen Marder
Institutions
- Tel Aviv University (IL)
- Columbia University Irving Medical Center (US)
- Tel Aviv Sourasky Medical Center (IL)
- Cleveland Clinic Lerner College of Medicine (US)
- Massachusetts General Hospital (US)
- Parkinson's Foundation (US)
- Indiana University School of Medicine
- HealthPartners (US)
- Indiana University – Purdue University Indianapolis (US)
Publication Details
- Journal
- npj Parkinson s Disease
- Published
- 2024-10-25
- DOI
- https://doi.org/10.1038/s41531-024-00805-z
- Citations
- 5
- Primary Topic
- CRISPR and Genetic Engineering
- Type
- article
- Field-Weighted Citation Impact
- 1.17
Funders
- Sanofi
- Biogen
- Parkinson's Foundation
- Servier
- National Institutes of Health