Louise Miller-Frost (Boothby, Australian Labor Party) Share this | Hansard source

I start by commending the member for Macnamara for his commitment to ensuring we have a fair life insurance system, free from genetic discrimination. Many common life-threatening illnesses are influenced by genetic factors. Most commonly known are the cancers, but there are also autoimmune, degenerative and other conditions. Genetic and genomic health technology can be used to determine whether a person is likely to develop genetic conditions later in life. This technology is reshaping the ways in which we diagnose, treat, and—perhaps most importantly—prevent heritable conditions. It has the potential to save lives.

However, undergoing genetic testing does carry a risk, and it's one that might not be obvious. There is a risk that undergoing this testing could lead to discrimination in life insurance products. A positive genetic test which identifies that somebody may be at higher risk of developing a condition later in life may adversely affect that person's ability to secure a life insurance policy. This is completely counterintuitive to the concept of early diagnosis and treatment. The metaphor of the fence at the top of the cliff versus the ambulance at the bottom is one that's often used in the health sector. The fence at the top stops someone falling off the cliff and needing the ambulance. Genetic testing is that fence at the top of the cliff.

Early identification of an increased risk of developing a condition empowers the person and their treating team to make rational decisions to limit the risk. The most often talked about are perhaps the BRCA1 and BRCA2 genetic mutations that put women at higher risk of breast or ovarian cancer. Knowing that she has this gene mutation enables a woman to consider options such as more frequent monitoring or even removal of the breasts and ovaries.

Fear of having a genetic test might impact your ability to get life insurance or fear that it might increase the cost of life insurance works against the patient finding out early and being able to do something about it. In Australia, there is currently an industry-led moratorium that has been in place since 2019. The moratorium says that the insurance companies will allow people to take out life insurance cover up to certain limits without having to disclose a genetic test. However Monash University's A-GLIMMER report raises several issues with this moratorium—and credit to Dr Jane Tiller for her work in this area. The issues include that people may be dissuaded from getting a genetic test for fear they would be discriminated against in their life insurance policies and also that the moratorium is industry self-regulated and that this provides little certainty for consumers.

Insurers do not need to provide reasons for their decisions to charge higher premiums or decline insurance. They do not need to advise if a genetic test may have been a factor. An insurer's assessment of their financial risk may be at odds with a medical assessment of risk. Ironically, by discouraging consumers from accessing genetic testing and early intervention, the insurers may in fact end up paying out more as their consumers get sicker or die from conditions that may have been preventable if they'd been empowered to get that prevention. Currently there is no government oversight of this industry-led moratorium and there is no process for individuals to challenge decisions that may have been influenced by genetic test results. The increasing evidence that fear of life insurance discrimination is discouraging people from having genetic testing is very concerning. Prevention and early intervention is better than cure, and the fear—or the reality—of discrimination is removing the ability to access that prevention and early intervention. It seems evident that the current moratorium is doing little to reassure people.

In 2018 the Parliamentary Joint Committee on Corporations and Financial Services recommended a ban on the use of genetic results by life insurers. There is already some form of prohibition or ban in place in New Zealand, the UK, Canada, Europe and the US, and this kind of regulation could be a vital tool for Australia as well. We must ensure that our citizens have access to life-saving testing, and we need to create a system that allows and encourages our citizens to utilise this life-saving measure freely and without fear of future discrimination. Australians should be able to make these decisions based on their health needs, not financial ones, and we have the opportunity to make that a reality.

It's obviously in the interests of insurance companies to increase premiums and to limit or prevent claims, but this is not in the interests of Australian consumers or of Australia as a whole, and self-regulation is clearly not sufficient to protect our interests. I believe legislation is required and I commend the member for Macnamara for this important private member's bill.

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