Ged Kearney (Cooper, Australian Labor Party, Assistant Minister for Health and Aged Care) Share this | Hansard source

I rise to address the chamber about the important and complex issues relating to genetic testing and life insurance. Throughout history, people have noticed that some diseases run through certain families or different cultural groups. This has been witnessed and experienced even when medical science was in its infancy and before we had sophisticated treatments for different cancers or heart disease. Now, due to the rapid scientific developments of recent years, we have genetic testing that can identify changes in genes, chromosomes or proteins that can confirm or rule out a suspected condition or determine a person's chance of developing a disease.

The science is amazing. It unfurls a person's DNA sequences to identify mutations and builds a picture of possible disease risks that lay ahead in an individual's future. This technology means that instead of knowing that your uncle developed bowel cancer or your grandmother died of breast cancer and worrying that you may develop the disease, you can actually test to get answers about your genetic predispositions. It can give people a sense of control and agency when it comes to preventing diseases to make lifestyle changes earlier in life. It is clear that this kind of testing can and does save lives. It gives people answers. It gives families an opportunity to avoid health pitfalls. It unlocks information about intergenerational disease and potentially gives people the opportunity to extend their lives.

This technology is increasingly available and set to become a more mainstream part of health care as people seek it out in Australia. However, in Australia, we find ourselves in a situation where insurance companies are discriminating against consumers based on the outcomes of genetic testing. Currently, life insurance companies can require applicants to disclose their results from genetic testing. Under current Australian law this practice is legal. This means insurers who are, of course, profit driven and risk averse by nature could potentially refuse to cover an individual who is identified to have a genetic disposition to a certain disease, like bowel or breast cancer. They could charge higher premiums based on genetic results, and insurers are not required to give the reasons for their decisions relating to higher premiums or refusing coverage. This lack of transparency creates reasonable concerns.

I have been contacted by a number of constituents who've been affected by this concerning situation, such as Hazel. Hazel is a genetic counsellor who sees people avoid genetic testing because they are concerned about the financial implications. Yet, she observes, people who are taking proactive steps to protect their health are actually being penalised. And there's Sarah, who works in a pathology lab. She is concerned that fewer people will access genetic testing because of this issue. She makes the case that individuals who better understand their inherited disorders are in a better position to live longer lives whilst also saving the health system money as conditions are actually caught upstream. These issues are something our government should look into and consider changes.

I'd like to acknowledge my colleague, the member for Macnamara, Josh Burns, for introducing a motion this week on genetic testing and life insurance. This is picking up the work of the 2018 Senate inquiry into the life insurance industry. I'd also like to acknowledge the hard work and advocacy of Dr Jane Tiller from Monash University, who's been a pivotal voice on this issue. And I would also like to thank my constituent Associate Professor Paul Lacaze for all of his work to drive change on this as an individual who's been affected by this situation and also as a researcher and scientist in public health and preventative medicine.

We know that prevention is better than a cure. And what is better is knowing exactly what that prevention looks like, through the amazing technological advances of genetic testing. This is where people can make decisions to help prevent diseases and stay healthy, should this be supported, and it's beyond our understanding and our comprehension that life insurance companies don't see the benefits of this and can't see that people who take the effort to get genetic testing so that they can alter their lifestyle, so that they can take preventative action and so that they can make sure, to the best of their ability, that they will live longer are not actually better risks. This is something I look forward to working with my colleagues on and the wonderful constituents who've raised this issue with me.

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