1800 244 735

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 [email protected]

Search for more articles




Position Statement: What we don’t need to prove but need to do in multidisciplinary treatment and care in Huntington’s disease

Abstract Background Huntington’s disease is a complex neurodegenerative hereditary disease with symptoms in all domains of a person’s functioning. It begins after a healthy start in life and leads through the relentless progression over many years to complete care dependency and finally death. To date, the disease is incurable. The long progressive complex nature of ... Read more

National Conference recordings

In May 2021 Huntington's NSW ACT hosted the national conference. This conference was virtual due to the COVID-19 pandemic. There were four key themes for the conference - achieving quality of care; achieving better policy outcomes; achieving better consumer outcomes; and research update.

Medical ID card

Did you know that we offer free Huntington’s disease identity cards? They provide information on HD and have space for emergency contact details. The cards can be attached to a lanyard to help others understand, or kept in a wallet in case of emergency. If you or someone you love would like a HD ID ... Read more

Carer Emergency care plan

The Carer Gateway have created an electronic template for carer’s to use and the latest version can be accessed here. An emergency care plan makes it easy for someone to take over from you in a hurry. It has all the information about the person you care for in one place, so you can get ... Read more

Australians need more protection against genetic discrimination: health experts

Authors: Jane Tiller and Paul Lacaze Published: October 5, 2021 Source: The Conversation   Excerpt: Genomic testing — the ability to read an individual’s genetic code and identify their risk of conditions such as cancer — has opened up huge possibilities in personalised medicine. But it has also introduced serious ethical challenges. Particularly, there is ... Read more

Normalising life at risk of Huntington’s disease. A qualitative study of backgrounds and coping strategies of fears of genetic discrimination

Studies in the sociology of genetics have shown how living with a predisposition to a genetic disorder often comes with significant psycho-social burdens and struggles. One of these struggles is the fear of genetic discrimination. Despite genetic non-discrimination regulations, research shows people still worry about being subjected to genetic discrimination. This article adds to this existing body of literature by showing why people still worry about genetic discrimination and how they cope with these worries.