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Huntington's Disease Youth Organization

Can you get tested for HD anonymously?

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

www.hdyo.org

Q. Is there a way to be tested for huntington’s anonymously?

Rain, Teen, UK

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A. Hi Rain, As far as genetic testing on the NHS, no, it would not be offered as an anonymous test. Does your concern relate to other people finding out you are going for a genetic test? In clinical genetics we work very hard to ensure confidentiality for each individual and so we do not disclose the details of an individual case/consultation with anyone else, including other members of the wider family if known to the department. If you would like some reassurance about steps to assure confidentiality around an appointment you could always ring Nottingham Genetics dept (0115 962 7727) and ask to speak to one of the genetic counsellors there (assuming Mansfield, England – do let me know if different).

I would be very concerned if private companies offered genetic testing without adequate pre and post test counselling support.

If there are other concerns relating to your question, please do get back in touch.

Best wishes,

Rhona