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

Our modern health system is amazing. Our health system here in Australia, despite its challenges, is the best in the world. If you're sick or you're injured, you wouldn't want to be anywhere else. But no-one wants to be sick, and as in all things, prevention is better than cure. It's cheaper and more effective. So a lot of focus in the health system goes to health prevention, and if you can't prevent disease, then early intervention is next best.

One of the amazing areas of health that has advanced so much in recent years is genetic testing. We know that a number of conditions have a genetic link, either directly causal or in terms of susceptibility. So genetic testing, identifying an individual or a family's genetic susceptibility to conditions, enables them to make informed decisions about screening, preventive actions and treatments. We want people, particularly those who know they have a family history of a particular disease state, to get tested and be able to make those informed decisions so they can stay healthy or seek early treatment.

One of the barriers to this has been where life insurance companies have required individuals to disclose the results of genetic testing and have used this either to deny life insurance or to increase premiums, which is completely counterintuitive. Those people who know they have a susceptibility and are actively managing the risks to prevent the disease state from developing are, in fact, at lower risk of death or disability from that disease than those who have the genetic predisposition but don't know it and therefore aren't able to seek screening or early intervention. The Treasury Laws Amendment (Genetic Testing Protections in Life Insurance and Other Measures) Bill 2025 will ensure that any adverse findings as a result of a genetic test will not impinge on the determination of an individual's cover for life insurance. No-one should be dissuaded from potentially life-saving testing out of a fear of discrimination in life insurance products.

Australia lags globally on this issue. The UK, Canada, Europe, the US and New Zealand have all implemented some form of prohibition or ban. This bill seeks to rectify this blind spot in our current framework. Specifically, it bans life insurers from assessing eligibility for cover or the terms and conditions of the cover on the basis of the results of a genetic test, thereby ending the discriminatory practices of insurers who would, as is their job, prioritise their financial bottom line over people's health.

I'd like to pause here and thank Dr Jane Tiller from the public health and genomics unit at Monash University, who's been a consistent campaigner on this issue. Dr Tiller is very familiar to many of us here in the halls of parliament, as she's made her way around, making the case on a bipartisan basis, for a number of years—backed by data, backed by science and backed by compassion and a commitment to improving the health of Australians by encouraging them to get informed about their risks and to manage those risks.

A 2018 parliamentary inquiry into the life insurance industry recommended a ban on the use of genetic results in life insurance underwriting. In 2019, the life insurance industry introduced a partial, self-regulated moratorium, which prohibited the use of genomic testing results for underwriting policies above certain financial limits. But the moratorium did not provide confidence to Australians that the results would not be used against them, and we know that many people chose, and still choose, not to proceed with genetic testing as a result. The self-regulated moratorium had no government oversight and therefore failed to meet the expectations of the parliamentary inquiry. This legislation provides that confidence to Australians—that they can proceed with genetic and genomic testing without it impacting their ability to get life insurance and without it affecting their premiums.

This legislative amendment brings into alignment the Insurance Contracts Act 1984 and the Disability Discrimination Act 1992, ensuring that our antidiscrimination laws do not lag behind the medical science and ensuring that Australians with adverse genetic test results are protected in their dealings with life insurers, because this is as much a human rights issue as it is a medical one. No-one with a disability should be discriminated against, including those with genetic variations, and we want to encourage people to look after their health, including through preventive and early intervention measures, such as genomic screening.

The industry led moratorium in place since 2019 prescribes that companies will allow individuals to take out life insurance up to certain limits without having to disclose a genetic test. However, the report of Monash University's Australian Genetics and Life Insurance Moratorium: Monitoring the Effectiveness and Response, A-GLIMMER, finds that many individuals are still dissuaded from getting a genetic test for fear of discrimination in their life insurance policy and that, because the moratorium is industry self-regulated, there is little certainty for consumers. Currently, there is no government oversight of the industry led moratorium, and there's no review process for individuals to challenge insurers' decisions in the event that they may be influenced by genetic testing results. Ultimately, people are postponing or avoiding undergoing genetic testing in case it should negatively impact on their life insurance cover. Parents are reluctant to tell their children of any genetic condition and recommend testing in case it should impact their policy.

Genetic testing is crucial for determining whether an individual has a genetic disease or condition. Many common life-threatening illnesses are influenced by genetic factors: cancer, autoimmune diseases, degenerative diseases and many other conditions. Genetic testing allows individuals and their medical practitioners to plan for every contingency. Genetic and genomic health technology can be used to determine whether an individual is likely to develop genetic conditions later in life. The early identification of an increased risk of developing a condition empowers the individual and their treating team to make rational decisions to limit the risk. As in the well-known public health metaphor of the fence at the top of the cliff versus the ambulance at the bottom—where the relatively cheap preventive force of the fence at the top stops someone falling off the cliff and needing an expensive and potentially less effective ambulance service—genetic testing is that fence at the top of the cliff.

The Albanese Labor government is committed to the future of genetic testing and research for Australians, a health system and scientific frontier focusing on prevention and early intervention that is crucial for the health outcomes of all Australians. The government, through its Medical Research Future Fund Genomics Health Futures Mission, is investing $500.1 million in genomic medical research over 10 years from 2018-19. The Minister for Health and Ageing previously announced new listings on the MBS for a range of genetic tests valued at $148.5 million over the next four years. Additionally, the government is consulting with states and territories on the development of a nationally cohesive approach to medical genomics, including the establishment of a national genomics body. That life insurers should potentially hold genetic testing against individuals, and therefore put their health at risk, is indefensible. Australians should not have to be forced to choose between life and death when there are alternatives that can identify risks and enable treatments to be implemented.

Treasury analysis indicates that people are likely to avoid or delay genetic testing or to refuse to participate in medical research for fear they will be penalised by their insurer. Remarkably, life insurers do not need to provide reasons for their decision to charge higher premiums or to decline insurance. They do not need to advise if a genetic test may have been a factor. A life insurer's assessment of their financial risk may be at odds with the medical assessment of risk. Ironically, by discouraging consumers from accessing genetic testing and early intervention, they may in fact end up paying more as their consumers get sicker and die from conditions that may have been preventable if they'd been empowered to get that prevention.

This amendment puts an end to the exploitative and illogical practice. It protects individuals who have a high risk of a heritable condition from life insurers raising the premiums on their cover or even denying it. As a result, more Australians will be encouraged to undergo genetic testing without the looming anxiety of their life insurer potentially altering their cover, because of which Australians will be able to obtain preventive and earlier treatment, potentially saving thousands of lives and thousands of years of disability.

Australians will also be encouraged to participate in clinical research, which will help to advance new scientific medical developments and, ultimately, greater health outcomes. Genetic research is critical in improving the screening, early diagnosis and treatment of patients. Genetics and genomics are reshaping clinical practice and changing the way that we manage a range of heritable conditions, cancer predisposition syndromes and rare cancers. The ban will mean that individuals can give written consent to volunteer their genetic testing information to life insurers if they determine it is to their benefit, and life insurers are still able to use symptoms, diagnosis and family history to ensure that their policies are properly risk rated and underwritten.

In addition, these changes create both civil and criminal penalties for non-compliance and attribute the powers of enforcement and oversight to the Australian Securities and Investments Commission, ASIC, as per the government's commitment. These reforms are intended to bolster individuals rights and afford them protection when it comes to their healthcare decisions, recalibrating a health system that should be working for them, not against them.

It's an amendment that has been a decade in the making. I again pay particular tribute to Dr Jane Tiller, whose tireless campaigning over the last few years has now seen deserved success. I commend the bill to the House.

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