Lynch Syndrome and Insurance


Life insurance and income protection insurance are so important, yet people with Lynch syndrome are often denied access to cover.

In late March this year, a Parliamentary Enquiry into Life Insurance released a report recommending that Australian Life Insurers no longer use predictive genetic testing (such as testing for Lynch syndrome) when deciding to cover someone for life insurance.

Lynch Syndrome Australia asked Australian families living with Lynch syndrome about their experience with life insurance companies and we are working with a team at Monash University to lobby for these changes to law which would bring us in to line with other countries such as Canada, the UK and the USA. Read our survey results here.

Watch the video below from the 2018 Lynch Syndrome Symposium: Genetics and Life Insurance – Dr Paul Lacaze, Monash University.

Summary of Genetic Discrimination in Life Insurance in Australia

Lobbying for change

It is so important to lobby government directly about the issue of genetic testing and life insurance. We have been advised that standard correspondence with politicians is much less persuasive and influential than our personal stories, and so if you are interested in pushing for change, we suggest the following.

  • Outline how, in your experience, your access (or lack of it) to life insurance affects your life and your financial decisions.
  • Explain why the use of genetic test results when assessing any application for life insurance products discriminates against the tens of thousands of people with Lynch syndrome.
  • Point out that this practice has been banned in countries such as the USA, Canada and the UK.
  • Mention that you understand there has been a parliamentary inquiry which recommended in March 2018 that there be a total ban on the use of genetic test results in life insurance – Parliamentary report into Life Insurance 
  • Ask why this ban has not come into effect yet.
  • Explain how important it is to you that the government takes this very seriously and acts immediately to protect all Australians from genetic discrimination.

You can send a similar communication to Minister Hunt (; Minister O’Dwyer ( (the outgoing Minister for Revenue and Financial Services), Minister Robert ( (the incoming deputy Treasurer), and your local MP.

To find out who your local MP is visit here