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Huntington's Disease Youth Organization

Can kids be tested?

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

www.hdyo.org

Q. My father was diagnosed with a count of 38 and I also have the same count. Dad is now 75 and not really showing any signs I have since had 2 girls who are aged 5 and 6. My wife is now very worried for our daughters. Can kids be tested? Or is this up to each individual once they are 18?

Jason, Adult, Australia

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A. Hi Jason,

Many thanks for contacting HDYO. I am sorry to hear that your wife is worried for your daughters.

The short answer is that predictive testing is not recommended in children, mainly for the reason you mention - it is up to each individual when/if they might want a predictive test, so the minimum age according to the guidelines is 18 so that they can fully consider the pros and cons and give informed consent. Having said that, they do not have to wait until 18 to be seen in a Genetics clinic, and children can sometimes find this helpful to be able to discuss any questions or concerns they may have about HD and also the options around testing when they are older.

As a parent it is completely natural to worry about a child’s future, so I do understand your wife’s feelings. There are some reasons to be optimistic for them though, particularly given that both you and your father have a CAG repeat size in the ‘reduced penetrance’ range – as you probably know, individuals with 38 repeats may not develop symptoms of HD at all, or they may start at a later age than average (I was pleased to hear that your Dad is not really showing any signs at 75). If either/both of your daughters have inherited a reduced penetrance expansion as well, the same would apply to them. As you may have read, the CAG size can sometimes be a little more unstable when passed on through a male parent, but it still often stays at the same / a similar size (just like when you inherited it from your Dad). Given that a huge amount of research is going on, by the time your daughters are older we would also be hopeful there may be some even better treatments available.

I hope this helps answer your question, but please do not hesitate to get back to us with any further queries. Best wishes,

Bill