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Huntington's Disease Youth Organization

Since my dad won't get tested is there any way I can?

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

www.hdyo.org

Q. My grandma inherited HD from her mother and she recently passed from it. My grandma has 4 children, 1 of which has been tested positive but the others do not want to know. My question is since my dad won’t get tested is there anyway I can still be tested? I have a family of my own to worry about and I don’t see how it’s fair to me and my girls not to know where my life may or may not take me with this horrible disease.

Cindy, Young Adult, USA

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A. Dear Cindy,

Thank you for your question, I was very sorry to hear that your grandma recently died with HD.

In terms of your issues regarding genetic testing, it is quite common for different family members to make different decisions with regards whether or not to have a predictive test for HD. Unfortunately this can sometimes lead to a dilemma when a parent does not want to have predictive testing, but their child does want testing.

If someone at 25% risk of HD had a predictive test, it could potentially take away the right ‘not to know’ for their parent (in this case your dad). Therefore, it is very important to carefully explore the pros and cons of predictive testing, to try to respect the wishes of all individuals in the family.

I wonder if your dad is aware of your feelings about testing, and whether you/your father have seen a Genetic Counselor? You may find it helpful to be able to discuss your situation in more detail with them, and they could then talk through your options. If this is something you would be interested in, this website may help you to find your local Genetics service.

I wish you all the best with this difficult situation, and please do not hesitate to get back in touch if you have any further questions, or if you have any difficulty finding your local Genetics service.

Bill