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Huntington's Disease Youth Organization

Can kids be tested if their mom doesn't want it

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Q. My sister was diagnosed with HD, another sister is showing symptoms but has withdrawn herself from the family (everyone but myself) and it not rational. She has 3 kids, 17-23 years of age. 2 of the 3 went to be tested by a genetic counselor and were told that they could not be tested as it would be a violation of their Moms hippo rights. The kids are now having kids of their own and our family is struggling. Have you heard of this before and is there any way around it?

Tina, Young Adult, USA

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A. Dear Tina,

Thank you for your email. I am very sorry to hear of the difficulties you are facing as a family.

In terms of your sisters’ children who have requested genetic testing, this is a situation that does come up from time to time, and unfortunately it can be very difficult to resolve. As you mention in your question, testing someone at 25% risk of HD can be problematic, as it can potentially take away the right ‘not to know’ for their parent (in this case your sister). Therefore, in situations like this it is even more important to carefully explore the pros and cons of predictive testing, to try to respect the wishes of all family members.

In your family, the situation is perhaps even more complex given your sister’s recent symptoms, and I wonder if this would currently make it difficult or even impossible to involve her in a discussion about her children’s feelings regarding predictive genetic testing.

Do you think your sister would agree to see a doctor or HD specialist? Regardless of whether or not her current symptoms are related to HD, there may be treatments available that could help alleviate them (which in turn may make it easier for her to consider the issue regarding her children). It may also be worth your sister’s children re-contacting their genetic counsellor to make them aware of your sister’s current symptoms (and particularly if your sister is diagnosed with HD).

I hope this is helpful, and please get back in touch if there is anything further we can help with. I wish you and your family all the best.

Bill