Important Considerations

The following are just some of the issues to consider:

  • Is this person supportive of your decision to be tested or does he/she have a conflict with your decision?
  • Have you discussed decisions that affect you as a couple that you might make differently depending on your test results: for example, decisions about having children, retirement and long-term care issues?
  • Many people who are at risk for HD fear abandonment by their spouse or significant other should they develop HD. Have you discussed this fear or other fears with your partner?
  • Do your children know about HD?
  • Are they pushing you to have testing or are you involving them in your decision-making?
  • Will you tell them your results? If so, how will you tell them?
  • How do you think the test results will affect your interactions with your brothers and sisters, your parents and extended family?
  • If the results show you have inherited the HD mutation, will this affect how you feel about your affected relatives: for example, feeling closer to or more distant from them?
  • If you do not have the HD mutation you may experience “survival guilt”, meaning that you wonder why you have “escaped” this disease whereas others in your family have been less fortunate. A person given a normal (negative) result may also experience a new feeling of responsibility for affected family members.
  • Who, if anyone, in your family do you plan to tell of your results? How would you tell each of them: for example, by phone, by letter, at a family meeting?
  • Are there people in your life that you feel you can talk to about HD and about your decision regarding testing?
  • Have you been through difficult periods in your life with them before?
  • In what ways were they supportive to you?

If you have used professional support services (for example, a therapist, psychologist, religious advisor, 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.

  • Will your test results affect your decisions about the type of work you are doing now or plan to do in the future? Do you plan to tell the people you work with about your decision to be tested or test results?
  • Many people at risk for HD fear they will be treated differently at work if they tell anyone about HD. Some people fear they will not be considered for promotion, or that they may even lose their job. Some companies have confidential employee services where you can discuss these concerns.

You may wish to arrange adequate insurance coverage, if possible, before beginning testing, as individuals who have tested positive for the HD gene will be very unlikely to obtain new insurance coverage. Some people may feel locked into a certain job to maintain insurance coverage. Please inform your local Huntington disease support group of any problems you encounter in this regard.

Honestly considering your feelings about whether or not you believe you have or will develop HD is important. It can be more difficult to deal with the test results if the results are the opposite of your inner feelings.

  • How have you dealt with difficult situations in the past? What things do you do to get out of a slump: for example, call a friend or family member, go for a walk, work out, work in the garden?
  • What strategies work well to help you out in the short term versus those that work over a longer term?
  • How do you ask for help when you need it? Recognizing what resources have worked for you in the past is helpful because you can start using them again when you need help in the future.

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” 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 (for example, “not until next year, 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 in the future.