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What to Know about Genetic Testing

Genetic testing can help identify changes in our 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.

Some of the greatest strides in understanding Parkinson’s disease (PD) and developing new therapies have come from the study of 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.

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Navigating Clinical Trials

The Michael J. Fox Foundation's guide and related materials will help you learn the basics of clinical research and gain an understanding of the valuable contributions made by study volunteers. Learn about genetic research and testing in Chapter 3 of the guide.

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 mutation 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 is trained to talk with you and help you gain a fuller understanding of 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 or will not get Parkinson’s

    Parkinson's is not linked to any single gene mutation that causes disease 100 percent of the time. If you do test positive for a PD-linked mutation, it does not mean you will absolutely get Parkinson's. There are actions you can take, such as exercise, to lower risk. Conversely, if you test negative for a PD-linked mutation, you may still develop Parkinson's. Other mutations and factors such as aging and environmental causes also contribute to risk. Science is working to better understand who does get Parkinson's and why. (Enroll in the Parkinson's Progression Markers Initiative today to aid this effort.)

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    Genetic testing is primarily for research, not care

    Genetic testing as part of a research study is not necessarily intended to provide you with personal medical information and, in some studies, you may not learn your results. As of this writing, even if you discover that you do carry a genetic mutation, these results will not significantly alter your personal medical care. Some studies are testing new therapies in mutation carriers. Your genetic status may allow you to participate in research studies, partnering with scientists to add to our existing knowledge about brain disease and help evaluate new treatments.

What Is a Genetic Counselor?

Genetic counselors provide education and support to people who are considering or have undergone genetic testing, including 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 talk you through specific considerations or questions surrounding employment, insurance, family and cost.

Learn more about genetic counselors in Chapter 3 of our guide to Navigating Clinical Trials.

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.

  • Research Studies

    • Parkinson's Progression Markers Initiative: As part of study screening, our landmark study is providing free genetic testing and counseling for people of Ashkenazi Jewish descent diagnosed with Parkinson’s in the last two years or with a first-degree family member (parent, sibling, child) with Parkinson’s disease.
      (People of Ashkenazi Jewish descent — who have Jewish relatives from Eastern Europe — are more likely to carry mutations linked to Parkinson’s disease in the GBA and LRRK2 genes.)
    • 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: On the first page of our study matching tool, select "Parkinson’s disease." Then select that you want to search on your own. On the next page with the map, type "genetic" in the keyword section and search to find ongoing studies that need volunteers. (Note, not all research studies that require genetic testing return the results of these tests to participants.)
  • Clinical Genetic Tests

    • Your doctor may be able to order a laboratory test for certain Parkinson’s-linked gene tests. Talk to your doctor and discuss coverage with your medical insurance. Learn more on the CDC’s website.
  • Consumer-Initiated Genetic Testing

    • There are also companies that 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. Invitae is one company that offers this service.
  • Direct-to-Consumer Genetic Testing

    • Direct-to-consumer tests enable individuals to learn more about their ancestry as well as their personalized health insights, based on their genetics. 23andMe is one company that offers this service.

This resource was made possible by Prevail Therapeutics. Partner support allows us to furnish high-quality educational content to the Parkinson’s community while maintaining our commitment to allocate donor dollars to high-impact research. The Michael J. Fox Foundation is solely responsible for the content on this page.

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."
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