Since Huntington´s is a genetic disease, a DNA test can be carried out, which will usually tell you whether or not you have the faulty gene that causes it. In a few cases, the test result is not clear, making it difficult to give a definite answer. Below are some things to think about if you are considering getting tested:
- It is important to know that only you can make the decision to get tested and usually one has to be over 18 years old before the test is performed. Parents, partners, friends or other family members may pressure/encourage you to get the test, but it is ultimately your decision alone.
- If you decide to take the test, in addition to the emotional impact on you and your family, you also need to consider the effect a positive result will have on other aspects of your life, such as life insurance and future job opportunities since in some professions, a positive result may be an obstacle (for example, joining the armed forces).
- When you first learn that you may be at risk, it is important not to rush into making a decision about getting tested, because once you have been given the result, you cannot change your mind.
- It is important to remember that you can withdraw from the testing process at any time.
- Going to a genetics clinic does not mean that you are obliged to take the test, but it does give you the chance to talk over all the implications and any other concerns you may have. Each clinic follows an agreed counselling ‘protocol’; usually at least three sessions where you can talk over the implications of testing and any questions you may have, before you decide.
The testing procedure involves sessions with various professionals. It typically includes one session devoted to each of the following: genetic counselling, a neurologic exam, a psychological interview, discussion of the results and follow-up. The genetic test itself is a blood test.
The purpose of the preliminary sessions is to ensure that the person understands the potential implications of his/her genetic status and is prepared to receive the results. The neurologic exam will determine if any early symptoms of HD are present. If the person is found to be symptomatic, he/she will be offered the option of discontinuing the testing procedure.
It is important to note that pre-symptomatic testing for HD cannot determine when the disease will begin or its course or severity. People who test positive for the gene may remain healthy for many years. HD can only be diagnosed by a neurological exam.