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Why might I not want the genetic test?

January 20, 2016

Huntington's Disease Youth Organization

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


Why might I not want the genetic test?

Q. Hi! I like a lot your page and it’s helping me a lot. Would you tell me three reasons for not to take the genetic test? Thank you very much.

Silvia, Teen, Spain

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A. Hi Silvia

Thank you for your message and question! I am glad to hear you have found our website useful. Three reasons for not wanting to take the genetic test? Well, ok, I will do my best to help. Did you know that the majority of people at risk for HD don’t get tested? It’s an interesting piece of information. Sometimes it is easy to think ‘surely people would test if at risk?’ but most people choose not to. Reasons for this include:

  • not wanting HD to dominate their life
  • Being determined to live their life without facing HD and just living as normal a life as possible
  • not being mentally ready to get tested (they could be too young, not the right time in thier life to test or not certain enough they can cope with the results - all good reasons not to test)
  • a 4th reason, sometimes financially people can’t afford to get tested, or testing isn’t easily available in their region of the world and these can stop people from getting tested

I hope this helps, I am here to chat if you wish.