Predictive testing for HD

HD is a hereditary disorder caused by a faulty gene. If one of your parents or another relative has HD then you will probably be worried about the likelihood of developing the disease yourself. Living with the knowledge that you are at risk can be very worrying. You may feel that you would prefer to know for certain whether or not you have a copy of the faulty gene. A DNA test can now be carried out which will usually give you this information. In very rare circumstances the result may not be able to tell you if you will develop symptoms or not. Although the test is available, it does not mean you should have it. You need to consider very carefully whether the test is right for you. If you have only just discovered that you are at risk, then be careful not to rush into making a decision. Once you have been given your test results, you can’t change your mind about whether or not you wanted to know.

Only you can make the decision about whether you want to be tested and you usually need to be over eighteen years of age before it will be performed.

Parents, partners and other family members may pressure you one way or the other, but it remains your decision.

Testing is available at Regional Genetics Clinics, which are located throughout the country. A list of these centres is given in the HDA fact sheet ‘predictive testing.’ You can ask your GP to arrange an appointment for you.

You can attend a genetics clinic even if you have not decided whether or not to take the test and going to the 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 concerns you may have. Each clinic follows an agreed counselling procedure or ‘protocol’ which is usually spread over at least three sessions, to help you decide. You can withdraw at any time. Follow-up counselling after the test should be available.

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