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Huntington's Disease Youth Organization

Who does testing on children in California?

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

www.hdyo.org

Q. I live in California.. I would like to know who does testing on a young child of the age of 12 months. We are adopting my little niece but we just found out that her maternal mother had huntington’s disease. So we like to do the genetic testing just to plan the future.

Anabell, US, Young Adult

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A. Hi,

Thanks very much for your email and your question in relation to Anabell . The short answer is that no established HD genetic centre (i.e. one that follows internationally agreed guidelines) would test a child of 12 months. This is because HD is essentially an adult onset condition and so there is plenty of time for Anabell to be involved in any decisions about the future and indeed the majority of adults at risk of HD choose not to be tested.

The general consensus (amongst family members and clinicians) is that it is not in the best interests of a child (or parents) to know this information in childhood. Concerns include the emotional burden, potential for discrimination and impact on family relationships. I appreciate that the information about Anabell’s mother has only just come to light and I’m sure it has raised lots of questions for you including how to deal with uncertainty/think about the future etc. I would really encourage you to make contact with a health professional specializing in HD in order to have a more personal discussion and to be able to access information and support. A test can often feel like the way forward when first finding out about HD but can actually lead to more problems, particularly in this situation. Please let me know if you would like help accessing a local genetic centre. I am including a link to the website for the Huntington’s Disease Society of America. http://www.hdsa.org/ As well as providing fact files they also have information and links to local support groups and HDSA Centres of Excellence.

I wish you all the best in the process of adopting your niece.

Rhona