Genetic Testing: A Checklist

With Huntington’s Victoria

What To Consider:


Who is eligible?

  • You need to be considered at risk of Huntington’s disease (HD) with known or suspected history of HD in your biological family.
  • There are guidelines for genetic testing that outline the process as well as age of consent to access testing starting at 18yo. We would encourage you to refer to these guidelines in order to fully understand the risks and benefits of genetic testing. However if you have concerns about your children, please contact Huntington’s Victoria.


Is there any cost?

  • If you are an Australian citizen or resident, testing will be covered by Medicare with a referral from your GP.
  • If you are not eligible for Medicare, there may be associated costs for the tests. If you’re a citizen of another country, please refer to Better Health.



Other Considerations

  • Due to the genetic nature of the disease, your decision to get tested and any results may affect other family members. We would encourage you to explore these issues through counselling that will enable you to put strategies in place to support you and help with communication with family members.
  • Genetic testing and any results can also have an impact on future planning for your life including career and family planning.
  • Genetic testing may have an impact on your life insurance and superannuation.

Our Advice

  • You should not feel pressured by the advice of others, there is no right or wrong answer.
  • Take as much time as you need to make your decision, there is no time limit on getting tested.
  • Make sure the decision you make is the right one at the right time for you.
  • Access as much credible information as possible to inform your decision-making process.
  • If you have any further questions, please feel free to reach out to HV for further information.