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Huntington's Disease Youth Organization

Is it worth the risk?

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

www.hdyo.org

Q. I plan on getting tested for HD soon hopefully but at the same time I want to start a family. If I test positive I don’t want to pass it down to my children if they have the chance. Is it worth the risk?

Ashley-Marissa, young adult, US

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A. Hi Marissa,

Thanks for your email. I guess your question ‘is it worth the risk?’ may depend on whether you feel the information a predictive test would provide would be useful to you at this point in your lives particularly in respect to your wish to start a family. For example would it make decisions around starting a family clearer or make it harder for yourself and your partner in the event of testing positive? Some people in your situation, wishing to have children yet not wanting to pass on the HD gene fault, may choose to have a predictive test in order to help with a decision about whether or not to go down the testing route in pregnancy or to embark on a course of Preimplantation genetic diagnosis (PGD). Some people would choose not to have any form of testing in pregnancy and may then consider the question of timing in relation to when they choose to have a predictive test. Of course there is an equal chance of testing negative (assuming you are currently at 50% risk), and the reason for focusing on the issue of testing positive is to suggest the types of questions that may be useful to consider beforehand. I’m attaching a link to a website with good information about testing options http://predictivetestingforhd.com

I’d also encourage you to consider talking through your options with a genetic counsellor. Sometimes going through all available options can help to clarify your own feelings. I’m not sure where in the US you are living Marissa, but if you would like any help in accessing your nearest genetic centre, please do get back in touch.

I wish you all the best

Rhona Macleod