PD GENEration: Why Genetic Counseling Matters For People Living With Parkinson’s Disease
Parkinson’s disease continues to challenge individuals and their families worldwide, not only as a clinical condition but as a deeply personal journey. Parkinson’s research has historically focused on symptoms and treatment, but now a growing movement is illuminating another piece of the puzzle: genetics. One of the most exciting developments in this area is the PD GENEration study, a landmark research initiative that is empowering people with Parkinson’s disease around the world.
What Is PD GENEration?
PD GENEration is a research initiative led by the Parkinson’s Foundation that provides genetic testing and genetic counseling to individuals diagnosed with Parkinson’s disease at no cost. Participants can take part either online or through participating clinical sites, using a simple at-home blood collection kit or completing testing in person.
As a genetic counselor, one of the aspects I value most about PD GENEration is its commitment to returning individualized genetic results directly to participants. Every person receives a personalized genetic counseling session, ensuring they understand what their results mean for themselves and their families. This thoughtful, patient-centered approach is what truly sets the study apart.
Why Genetic Counseling Is Essential
Genetic testing can reveal if a person has genetic changes (variants) that are linked to Parkinson’s disease. But without expert interpretation, results can be confusing or even misleading. That is where genetic counseling plays a crucial role.
Genetic counselors explain what the specific genetic variant means for a person’s health and Parkinson’s diagnosis. We help individuals and families understand inheritance patterns and familial implications, such as potential risks for children or siblings. In addition, we provide support and guidance in choosing how — and whether — to share results with loved ones.
This combination of education, interpretation, and emotional support is vital. Genetic testing without counseling may leave participants with results they do not fully understand or that cause unnecessary worry. Genetic counseling helps participants make informed decisions and see genetic information in a meaningful context.
Empowering People Living with Parkinson’s
For many participants, PD GENEration is not just research, but a chance to gain clarity in the face of uncertainty. Learning about one’s genetic profile through counseling can offer a sense of empowerment, strengthen conversations with care teams, and help families better understand their own health journeys.
Now, through a WPC and Parkinson’s Foundation collaboration, people living with Parkinson’s disease will be able to join the PD GENEration study during the WPC 2026.
I invite you to tune in for the upcoming webinars to learn more and ask questions.
To register to attend the webinars to learn more, please use the links below:
Webinar 1: February 9th, 2026- 12pm MST [2pm EST/1pm CST/11am PST] - English
Register HERE: https://parkinson.zoom.us/webinar/register/WN_ZR8BsrAhQsijP61HAuTsGQ
Webinar 2: March 25th, 2026- 7am MST [9am EST/8am CST/6am PST] - Spanish
Register HERE: https://parkinson.zoom.us/webinar/register/WN_JSs91DBVQsueBhZpwiSXGQ
Webinar 3: April 15th, 2026- 2pm MST [4pm EST/3pm CST/1am PST] - English
Register HERE: https://parkinson.zoom.us/webinar/register/WN_pN64u3hQQ12ahZodt4pKcw
For questions about the PD GENEration study or the webinar, please email PDGENEprograms@parkinson.org
This is a monumental effort, and personally, as a genetic counselor and a scientific ambassador for the WPC, I feel this is extremely exciting and a wonderful opportunity. I invite all who are interested to participate. If you have questions, please find me at the WPC to chat. See you in Phoenix!
Priscila Delgado Hodges, MS, provides bilingual genetic counseling to participants in Parkinson’s disease research, ensuring culturally sensitive care for diverse populations. She plays a vital role in expanding access to genetic services and increasing research participation among Hispanic/Latino community. She is also currently a WPC Science Ambassador for the WPC 2026.
Ideas and opinions expressed in this post reflect that of the authors solely. They do not necessarily reflect the opinions or positions of the World Parkinson Coalition®