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Huntington's Disease Youth Organization

Can I have my adopted son tested for HD?

HDYO has more information about HD available for young people, parents and professionals on our site:

www.hdyo.org

Q. My son is adopted and his grandmother and great have it can I have him tested without their consent?

Anonymous, Young Adult

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A. Hi,

Many thanks for your question. It is very understandable that you are concerned about your son’s future health, and it sounds like you are keen for him to be tested to clarify things. It may be possible for your son to have a test, but this would depend on his age, as according to international guidelines, ‘predictive’ testing (when someone does not have any symptoms) is not offered in childhood. This is because it is recognised that many people at risk of HD choose not to have a predictive test. Therefore a predictive test is normally only available after the age of 18, so the individual can decide for themselves if/when to have a test. Predictive testing also usually involves several appointments with a Genetic Counsellor or doctor, so that all the information and pros and cons of testing can be explored, and no-one should feel rushed or pressured into having a test.

Before arranging a predictive genetic test for HD in any individual due to a family history of the condition, it is standard practice to try to confirm the diagnosis, ideally by obtaining a copy of the genetic test report for the affected family member. This is because there are some other conditions that can cause similar symptoms to HD, so it is important to make sure it is the right test. If the family member who has HD is alive, we would usually need their written consent. If is not possible to obtain this (or if there is no contact with the affected family member), in some cases it may still be possible to offer a test to adult family members. When a child is adopted, medical information about biological family is sometimes made available via the adoption services, and I wonder if this is something you have already looked into?

Another possible consideration for your son would be the level of risk that he carries the HD gene – if his biological parent with the family history of HD does not have symptoms of HD / hasn’t had a genetic test themselves, your son’s chance of carrying the gene would be 25%. Testing someone at 25% risk can sometimes cause difficulties, as the result may also reveal their parent’s genetic status, potentially taking away the parent’s right ‘not to know’. Depending on the circumstances, in some cases a test may still be offered to an adult at 25% risk.

I would be happy to hear from you again if you would like to ask anything further about any of this. I was also unsure from your question whether your son is aware of the history of HD in his biological family? This HDYO article gives advice about how/when to pass on information about HD to children, which you may find helpful. You may also find it useful to meet with a Genetic Counsellor, who could offer further information and support regarding any of this. You didn’t mention which country you live in, but if you let us know, we could try to give you more information about what Genetics services may be available to you locally.

I hope this helps answer your question, and please do not hesitate to get back in touch if we can be of any further help.

Best wishes

Bill