Genetic Testing and Parkinson Disease: Assessment of Patient Knowledge, Attitudes, and Interest
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The most common genetic contributor to late-onset Parkinson disease (PD) is the LRRK2 gene. In order to effectively integrate LRRK2 genetic testing into clinical practice, a strategy tailored to the PD population must be developed. We assessed 168 individuals with PD for baseline knowledge of genetics, perceived risk, and interest and opinions regarding genetic counseling and testing. Most participants felt that they were familiar with general genetics terms but overall knowledge levels were low, with an average score of 55%. The majority of participants thought it was likely they inherited a PD gene (72%), believed genetic testing for PD would be useful (86%), and were interested in genetic testing (59%) and genetic counseling (56%). However, only a few participants had heard of any genetic tests for PD (29%) or LRRK2 (10%). There appears to be a significant level of interest in genetics and genetic testing within the PD population, but a considerable deficit in genetics knowledge and an over-estimation of risk. Genetic education and counseling tools to address these needs were developed to provide patients with the ability to make informed and knowledgeable genetic testing decisions.
KeywordsParkinson disease Genetic testing Genetic knowledge Attitudes Perceived risk
We would like to thank the Penn CIGHT for supporting our pilot study through grant NIH P50 HG004487 from the National Human Genome Research Institute. The study was supported partially by AG-10124 (the Alzheimer’s Disease Core Center) and NS-053488 (the Morris K. Udall Parkinson’s Disease Research Center of Excellence). We would also like to thank Xiaoyan Han, M.S. for her assistance with the statistical analyses and all of the patients that participated in this study.
Disclosure of Interest
No conflicts of interest to report. Authors have full control of all primary data and agree to allow the Journal of Genetic Counseling to review data if requested.
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