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Huntington's Disease

Juvenile Testing

06/09/2008

Question:

I would like to find out where I can get my 7month old daughter tested for the huntington`s gene. I live in Ohio and OSU lab refused to do the test since she is under 18. My daughter father,his mother and her father all have the huntington`s. My doctor wants her tested and so do I. Do you have any suggestions? THANK YOU!

Answer:

There are numerous reasons why we generally recommend not testing individuals younger than age 18 years for HD.

A genetics counselor can help you explore those and help you decide and understand whether you should really pursue testing for your child. Most medical centers will refuse to test a child with no neurological symptoms of HD who is under age 18. Our genetics counselor and social worker would be happy to talk to you about these issues. We could arrange to have you come down to our center for further discussion. Feel free to call us at 614-688-8672 and we may be able to address some of your questions by phone.

You might want to look at the HDSA web site for further information about juvenile HD and genetic testing of children. It is very important to understand that there are many down sides to testing and there are ethical questions about the appropriateness of testing children without symptoms for HD.

I would be happy to discuss these issues with your doctor. We can also provide him with some additional information about HD.

For more information:

Go to the Huntington's Disease health topic, where you can:

Response by:

Sandra  K Kostyk, MD, PhD Sandra K Kostyk, MD, PhD
Assistant Professor of Neuroscience
Clinical Assistant Professor of Neurology
College of Medicine
The Ohio State University