Deciding whether to find out

What are my options?

If you receive a letter from the research study informing you that an actionable genetic change has been found, you have some options to choose from. You can call our genetic counsellors, or speak to them when they call you, for help to make these decisions.

Some people want to know as soon as possible what information was found.

Others would rather wait for a while.

Some people choose not to find out at all.

Our counsellors will always ask you for your consent before sharing your result with you, and can support you to make this decision. If now is not the right time for you, the information will be available for you when you are ready. In the meantime, you may want to discuss your options with your GP or other health professionals. 

What are some of the benefits of finding out?

  • You can find out whether you are at an increased risk of
    certain conditions
  • Knowing your risk means you can make a plan with your doctor to stay as healthy as possible
  • You may feel good about being able to share this genetic information with your family members
  • The genetic information may provide an explanation for conditions that may have occurred in the family. Some people find this reassuring and feel empowered as there is something they can do about their risk.
  • You will have access to appropriate medical specialists to help you take action on the results

What are some of the downsides of finding out?

  • You might feel fearful, anxious, or guilty. You may also worry about developing a health condition. (Read more here).
  • Talking about it with your family may be difficult or uncomfortable. The responsibility of sharing this information may feel like a burden to you.
  • If you do have an increased risk of a health condition, you might have to have more regular check-ups or undertake screening. This could be inconvenient or uncomfortable.
  • Results found as part of research studies need to be confirmed by a medical specialist. You will have a choice, but it may mean that there will be additional tests and appointments to make sure that the result is accurate.

Implications for health and life insurance

Genetic information does not affect your health insurance. Australian law protects this.

Genetic information can affect new life insurance applications or an existing life insurance policy if you apply to change or update the policy.

Your genetic information may also affect life insurance applications for close relatives.

However, there are industry standards and some new protections in place to make sure insurance providers have limited access to  your genetic information.

Until 2024, insurers will not be able to use genetic test results as part of an insurance application up to the value of $500,000 (for death and total permanent disability), $200,000 for trauma and $4,000 a month for income protection.

This protection may continue for longer; you can see this NSW Health Centre for Genetics Education fact sheet on life insurance products and genetic testing in Australia for more information.