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Huntington's Disease Youth Organization

Do I have a right to see my dad's test result?

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

www.hdyo.org

Q. My dad is getting tested for HD (and doesn’t know I know this) do I have a right to find out his test results as I have a 50% chance of getting it if it comes back positive?

Jordan, Teen, UK

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A. Hi Jordan,

Many thanks for contacting us with this interesting question.

Usually, like any part of someone’s medical records, genetic test results are kept completely confidential unless that person has given their permission for it to be disclosed. There are lots of good reasons for this – for example we are particularly keen that having a ‘predictive’ genetic test does not lead to unnecessary discrimination, or disadvantage an individual in any way. We want to make sure that, as far as possible, an individual can choose who and when to tell about their genetic test result.

Having said that, I can completely understand that you might be keen to know whether or not you have a chance of getting HD in the future, and clearly this depends on your dad’s status. The majority of people at risk of HD do not have predictive genetic testing, but lots of the people who do choose to have testing do so at least in part to help clarify the situation for their children, so it may be that your dad intends to pass this information on to you. However, it may be that he wants some time and space to get used to his own result before doing so.

Whether or not you do learn your dad’s test result, you may find it helpful to see a Genetic Counsellor to talk this through. They would be able to look at your family history in more detail to give you more tailored information, as well as offering further support with this situation and to talk about the options available to you depending on what information you have. I note you live in Scotland Jordan, and every part of the UK has its own Genetics service which you can access via your GP.

I hope this helps answer your question and please get back to us if we can be of any further help.

Best wishes

Bill