If you have Huntington’s (or Huntington) disease (HD), and genetic testing has confirmed your diagnosis, it is helpful to share your results with your family. Siblings and children are at risk to have also inherited HD and could consider genetic testing. Full siblings and children naturally share 50% of their DNA. This means that siblings and children of an individual with HD have a 50/50 random chance of having inherited HD as well.
A detailed family history can also provide information about which family members are at risk for developing HD. If symptoms or a diagnosis are not known for sure by looking at family history, offering a parent genetic testing can help to determine which side of the family the gene change for HD came from. This can allow extended family (aunts, uncles, and cousins) to know who is at risk so the focus can stay on them for the information and genetic testing discussions.
Genetic testing in at-risk adults that do not have symptoms ("predictive genetic testing") is available, but it is highly recommended that the genetic testing process include genetic counseling for guidance before and after genetic testing. Genetic testing is a highly personal decision. Medical evaluation of at-risk family members can also provide information about any symptoms or signs of HD.
In 2016, the Huntington’s Society of America (HDSA) in the U.S. has revised their genetic testing protocol, which provides information about the genetic testing process. To access this protocol, you can visit the HDSA website at http://hdsa.org/wp-content/uploads/2015/02/HDSA-Gen-Testing-Protocol-for-HD.pdf.
In the U.S., you can find a genetic counselor near you by visiting the Find a Genetic Counselor website (by the National Society of Genetic Counselors) at http://www.nsgc.org/findageneticcounselor.
Other Questions About Huntington’s disease
- Why is nutrition so important for people with Huntington’s disease?
- Why is depression and suicide higher in families with Huntington’s disease?
- Who else in my family should consider genetic testing for Huntington’s disease?
- Where do I find other people with Huntington’s disease?
- Where can Huntington’s disease caregivers learn more and get support?
