Genetic testing can help identify changes in DNA that may be linked to Parkinson’s. Learning your genetic status is a personal decision, but the results may help you take action in your health and advance science closer to cures.
Breakthroughs in understanding Parkinson’s disease (PD) and developing new therapies have come from studying human genetics. Read more below on what to consider before genetic testing and where to access this type of testing.
Ask the MD
Rachel Dolhun, MD, is a board-certified movement disorder specialist and The Michael J. Fox Foundation's Senior Vice President of Medical Communications. In this short video, she explains what to expect when you opt for genetic testing and genetic counseling in Parkinson's.
Navigating Clinical Trials
The Michael J. Fox Foundation's guide shares the basics of clinical research and the impact made by study volunteers. Learn about genetic research and testing in Chapter 3.
Three Things to Consider Before Genetic Testing
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The decision to seek genetic testing is a personal one
Learning you carry a gene variation that raises disease risk can be concerning for you and your family. The decision to seek genetic testing or to participate in genetic research deserves extra attention. A genetic counselor can help you better understand what your results might mean for you and your family. (Read more below on these providers.)
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Genetic testing cannot tell you if you will get Parkinson’s
If you do test positive for a PD-linked variation, it does not mean you will absolutely get Parkinson's. Conversely, if you test negative for a PD-linked variation, you may still develop Parkinson's. Other genetic variations and factors such as aging and environmental causes also contribute to risk. Our landmark study PPMI is working to better understand who does get Parkinson's and why.
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Genetic testing is primarily for research, not care
Today, if you do carry a genetic variation linked to PD, these results will not significantly alter your personal medical care. Your genetic status may allow you to participate in research studies. People with genetic variations can partner with scientists to learn more about brain disease and help test new treatments.
What Is a Genetic Counselor?
Genetic counselors educate and support people considering or who have undergone genetic testing. They work with people who have Parkinson’s, are at risk for the disease (because of family history of PD, for example), or are just curious about their genetics and health. Genetic counselors also can answer questions about genetic results' impact on employment, insurance and family.
Find a genetic counselor through the National Society of Genetic Counselors.
Options for Genetic Testing
There are a few places to get genetic testing. Not every test looks for the same gene changes. Talk to your loved ones, your doctor and ideally a genetic counselor when considering a genetic test.
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Research Studies
- PD GENEration: This Parkinson’s Foundation study is offering genetic testing for clinically relevant Parkinson's-related genes and genetic counseling at no cost for all people with a confirmed diagnosis of Parkinson’s disease.
- Fox Trial Finder: In our clinical study matching tool, select "Parkinson’s disease." Then select that you want to search on your own. On the next page, select "Advance filter" and type "genetic" in the keyword section. Then, select "apply filter" to find ongoing studies that need volunteers. You can then narrow the results by your location. (Note, not all research studies that require genetic testing return the results of these tests to participants.)
- Parkinson's Progression Markers Initiative (PPMI): PPMI provides genetic testing and counseling for certain groups, including people with Parkinson's who have Ashkenazi Jewish heritage, as well as people with Parkinson's who also have a parent, sister or brother, or child with Parkinson’s disease.
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Clinical Genetic Tests
- Some companies offer genetic testing with a doctor’s order. They may offer a telehealth appointment with their clinicians or ask you to consult with your doctor. Talk to your doctor and discuss coverage with your medical insurance. Learn more on the CDC’s website.
- Direct-to-consumer tests enable individuals to learn more about their ancestry as well as their personalized health insights, based on their genetics.
Our blueprint is the human genome, wonderful and unique to each of us. It could lead us to a way to detect, prevent and cure diseases.
