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Genetic Testing


Everyone is born with the Huntington gene, however an abnormal copy of the gene that is passed from parent to child causes the disease. Huntington’s Disease only occurs when someone is born with the abnormal gene and may then pass it on to their children. Every child of a parent with HD has a 50/50 risk of inheriting the abnormal gene.

Should you get tested?

Only you can make the decision about whether you want to be tested. Family, partners, and others may pressure you one way or the other, but it remains your decision.

If you’ve been exhibiting symptoms of HD or if you have a family history of HD, then yes, testing can be used to confirm whether or not you have an abnormal Huntington’s gene. If you test positive for the gene expansion, there are many steps you can take to prepare for going through the stages of the disease or join a clinical trial in an effort to find a treatment. 

HD Reach offers an At-Risk Decision Path and Anonymous Genetic Testing Path. This programs will help guide you through the decision-making process, build resiliency and develop coping skills. The Decision Path is designed to adjust to your needs, and you can always choose not to take the actual test. The Genetic Testing Path offered by HD Reach is anonymous. It differs from most other programs because HD Reach is not part of a medical center and we do not accept insurance. All records are kept in a secure private database and our client’s control who sees the results. The results are provided in-person or via teletherapy by two trained counselors. If you do test positive for the abnormal gene, HD Reach will help you figure out the many steps you can take to prepare for going through the stages of the disease.   

Additional places in North Carolina offering genetic testing include:

  1. The University of North Carolina at Chapel Hill.
  2. Duke University in Durham, North Carolina.
  3. Fullerton Genetics Center in Asheville, North Carolina.
  4. Wake Forest University Baptist Medical Center in Winston-Salem, North Carolina.

Testing is done safely and according to stringent protocol. Your blood sample will be securely handled and results will be interpreted accurately and quickly from reputable labs, which have done thousands of tests with virtually no errors.  If you would like to investigate other options please contact us at HD Reach.

Many people opt to go to UNC for testing because they are interested in information about pre-implantation genetic diagnosis (PGD), which is when an embryo created by in vitro fertilization (IVF) is tested for HD. People can opt to have their embryos tested prior to implantation so they can know for sure the embryo that is eventually implanted does not carry the gene for HD. All other options available could be discussed as well, including adoption, egg/sperm donation, CVS (chorionic villus sampling), and amniocentesis.

There are times when a person’s genetic test results are considered to be in the “intermediate range” and these kinds of results are always best discussed with a counselor so that a person understands the implications.

Many people think if they get a gene positive test result they are officially diagnosed with HD. The diagnosis of HD is actually made by a neurologist based on the presence of motor symptoms indicating HD in conjunction with a positive test result and/or positive family history of HD. So, it is possible you could get a test result that is gene positive, but the neurologist would have to be able to document the onset of symptoms in order to diagnose HD.

Life Insurance: If you do decide to get tested, you need to think about things like life insurance. If you are going to purchase life insurance, it should be done before you begin a testing process. Interested in exploring more options? Check out our Care Assistance Planning for more information.

How to Talk About Genetic Testing for Teens & Young Adults

Check out this presentation below from one of our previous HD Education Conference for Families