Presymptomatic Testing – HDSA Center of Excellence

The decision of whether or not to have presymptomatic testing, also known as predictive testing, for Huntington disease (HD) is a very complex and personal one. Each individual in a family with HD will feel differently about testing. There are no right or wrong choices. It is important, however, that the person who is thinking about being tested make an informed choice.

Check out Kaiser Permanente’s “Predictive Testing for Huntington Disease” video:

The UW HDSA Center of Excellence Presymptomatic Testing Protocol

Our presymptomatic testing protocol allows time for people to think through the issues thoroughly. Some people change their minds after starting the process, choosing to delay the test, or not to do it at all.

Visit 1 – Meet with genetic counselor for discussion
Visit 2 – Meet with neurologist and genetic counselor for continued discussion, neurological exam, and optional blood draw
Visit 3 – Disclosure of results in-person
Follow-up – Prearranged phone call or in-person visit

Testing Considerations

For individuals without symptoms of HD, the main benefit of presymptomatic testing is psychological, since currently there is no medical intervention (for example, early treatment, specific diet, or lifestyle changes) that can slow or prevent Huntington disease. The test results have important implications for many life decisions. The following areas are just some of the issues to consider:

Timing of testing

The process of being tested for HD and dealing with the results will be stressful and is often disruptive to dealing with everyday problems. It is good to choose a time to be tested when complicating factors from the outside are at a minimum. For example, in the middle of a divorce or break up of a relationship, or at a stressful time at school or work is not a good time to be tested. Testing at a time of celebration may not be optimal, for example, directly before or after marriage, or in the middle of important holidays.

It is easy to become “obsessed” with thinking about testing for HD. It is useful to make a decision about whether or not to be tested even if the decision is not an absolute yes or no answer. For example, deciding not to be tested for a certain period of time (such as, “next year,” or “after I turn 30”) can help you put this aspect of HD aside for a period of time until you are ready to readdress testing issues.

Insurance Coverage

You should be comfortable with your insurance coverage (life, disability, and long-term care insurance) before pursuing genetic testing. Please see our Genetic Testing and Insurance Issues page to learn more.

Seeking professional support

If you have used professional support services (for example, a therapist, psychologist, religious professional, psychiatrist) through difficult times in the past, it may be helpful to discuss your decision to be tested with this person. This is particularly important if you have had problems with depression, anxiety, or thoughts of suicide.

Testing in Children

The HDSA and the National Society of Genetic Counselors, in conjunction with researchers and clinicians involved in caring for people and families with Huntington’s disease, do not support the testing of anyone under 18 who is at risk for developing Huntington’s disease, unless they have symptoms of the condition that requires medical treatment.

For More Information

Visit our Impact of Test Results page to learn more about the emotional implications of various test results.

Being at-Risk – HDSA’s National Youth Alliance discusses the worries experienced by young people with regards to being at risk, while providing advice and support.

Adapted from a handout written by: Robin Bennett, MS, CGC, PhD Hon

Genetics