International Genetic Testing and Counseling Practices for Parkinson's Disease

Background There is growing clinical and research utilization of genetic testing in Parkinson's disease (PD), including direct‐to‐consumer testing. Objectives The aim is to determine the international landscape of genetic testing in PD to inform future worldwide recommendations. Methods A web‐b...

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Published in:Movement disorders 2023-08, Vol.38 (8), p.1527-1535
Main Authors: Saunders‐Pullman, Rachel, Raymond, Deborah, Ortega, Roberto A., Shalash, Ali, Gatto, Emilia, Salari, Mehri, Markgraf, Maggie, Alcalay, Roy N., Mascalzoni, Deborah, Mencacci, Niccolò E., Bonifati, Vincenzo, Merello, Marcelo, Chung, Sun Ju, Novakovic, Ivana, Bardien, Soraya, Pal, Gian, Hall, Anne, Hattori, Nobutaka, Lynch, Timothy, Thaler, Avner, Sue, Carolyn M., Foroud, Tatiana, Verbrugge, Jennifer, Schulze, Jeanine, Cook, Lola, Marder, Karen, Suchowersky, Oksana, Klein, Christine, Simuni, Tatyana
Format: Article
Language:English
Subjects:
Counseling
disparities
Genetic counseling
Genetic screening
Genetic Testing
genetics
Humans
Movement disorders
Neurodegenerative diseases
Parkinson Disease - diagnosis
Parkinson Disease - genetics
Parkinson Disease - psychology
Parkinson's disease
Surveys
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Summary:Background There is growing clinical and research utilization of genetic testing in Parkinson's disease (PD), including direct‐to‐consumer testing. Objectives The aim is to determine the international landscape of genetic testing in PD to inform future worldwide recommendations. Methods A web‐based survey assessing current practices, concerns, and barriers to genetic testing and counseling was administered to the International Parkinson and Movement Disorders Society membership. Results Common hurdles across sites included cost and access to genetic testing, and counseling, as well as education on genetic counseling. Region‐dependent differences in access to and availability of testing and counseling were most notable in Africa. High‐income countries also demonstrated heterogeneity, with European nations more likely to have genetic testing covered through insurance than Pan‐American and Asian countries. Conclusions This survey highlights not only diversity of barriers in different regions but also the shared and highly actionable needs for improved education and access to genetic counseling and testing for PD worldwide. © 2023 International Parkinson and Movement Disorder Society.
ISSN:0885-3185
1531-8257
1531-8257
DOI:10.1002/mds.29442