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Huntington's Disease Youth Organization

What makes people want to be tested for HD?

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

Q. What makes people want to be tested for HD?

Brianna-Jennifer, 19, USA

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A. Hi Brianna-Jennifer,

This is a great question for HDYO! The question of whether or not to have testing for HD (I’m assuming you mean predictive testing?) is a very personal one and sites such as this one and help to give a range of opinion and thoughts behind the testing decision. For many individuals at risk of developing HD the question also relates to timing and at what stage in their lives such information may or may not be useful.

There has actually been quite a lot of research on the question of what motivates people to be tested. We know that only about 10-20% of individuals at risk of HD, choose to have a predictive test. The main reasons put forward for testing include relief of uncertainty, needing to know and to help with decisions particularly around having children. Reasons for not testing include the fact that there is currently no cure and preferring to live with the 50% risk rather than risk the possibility of receiving a bad news result.

I’m not sure if there were other questions you wanted to ask, but if so, please do get back in touch.

Rhona MacLeod