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Predictive testing for Huntington’s disease: A big decision for young people


At Huntington’s Youth Connection we help kids, young people, and their families discuss HD. We also support and educate kids and young people about what having HD in their lives means for them as individuals.

As the youth social worker, one topic I encounter all the time is genetic testing and the decision a lot of young people face –should I test or not?

In 1993 scientists discovered the gene that causes Huntington’s disease. This discovery lead to a ‘predictive test’ being developed. In most cases, this simple blood test can tell someone at risk of HD whether or not they themselves have the gene that causes Huntington’s.

Once someone becomes aware that their mum or dad carries the gene for Huntington’s disease, they often start thinking about whether they want to know if they carry the gene too. Each person with a mum or dad with HD has a 50/50 chance that they too might get HD when they are older (it is really important to remember that there is the exact same chance that they won’t get it at all).

A lot of youth work time at Huntington’s Youth Connection is spent sitting with young people and exploring their feelings around whether they are going to test or not. This is great, as it is often a big, complex topic that needs a lot of thinking and talking about and we know that speaking to a professional about this can be really useful.

Taking a predictive test to find out whether or not you will get HD is a big decision and can be really hard to deal with emotionally. What if a person gets a positive result? Will they be able to live well knowing they will develop HD? What if a person thinks they’ll get a positive result and then gets a negative result? How does this change things? There is no right or wrong decision when it comes to testing.

Everyone is different. Some will decide to test and others will not. It is important to remember that testing is a personal choice. This means it’s a choice that only the person thinking about taking the test has the right to make. Mum, Dad, friends or other family members can be great to talk to about testing and whether or not it is a good idea, but ultimately, it’s the person’s sole decision and they should only get tested if they are sure this is what they want to do. For this reason, genetic counselling is a part of the testing process. this helps the person making the decision really be sure they are prepared for what the results may bring.

This small article is only an introduction to some of the issues faced by people in deciding whether or not to test. HDYO has a fantastic page on this that covers all you need to know. If you’re interested in learning more, have a read at https://en.hdyo.org/tee/articles/53 or contact us here at Huntington’s Youth Connection and i would be happy to have a chat with you and/ or help you find out more.

If you are a child, parent, young adult or teacher and would like more information on our youth program, please call Amy at Huntington’s NSW ACT on 9874 9777 or 0499 031 231 or email amy@huntingtonsnsw.org.au

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