Tom French (Moore, Australian Labor Party) Share this | Hansard source

I rise to speak in support of the Treasury Laws Amendment (Genetic Testing Protections in Life Insurance and Other Measures) Bill 2025. This is a bill about fairness, about modern medicine and about ensuring that Australians are not punished for taking responsibility for their own health.

Before I turn to the detail of this legislation, I just want to begin with something personal. When I was 25, I went for what I thought was a routine pre-employment medical. I was about to start my electrical apprenticeship, and I felt fine. I was working hard in building a career, and, like most young people, I was not thinking much about my health beyond getting through the week. That medical changed my life. A urine test picked up something that did not look right. That led to further investigations, and ultimately I was diagnosed with chronic kidney disease. I did not feel sick. I did not have symptoms that had prompted me to go see a doctor, and, without that test, I would not have known. If I had not known, I would not have been able to manage it, I would not have been able to slow its progression and I would not have been able to make decisions that have allowed me to live a full life, build a career, start a family and stand here today. That is the power of early detection. That is the power of information, and that is exactly what this bill is about—ensuring Australians are not discouraged from accessing that information.

The issue this bill addresses is straightforward. For too long, Australians have faced a quiet but very real disincentive to engage in genetic testing, not because they don't want to know, not because they don't value their own health, but because they fear what that knowledge might mean for their ability to obtain life insurance. The evidence before this parliament is clear. Australians have delayed or declined potential life-saving genetic tests because of concerns that adverse results could be used against them in insurance underwriting. That is not a hypothetical concern. It is a documented behavioural response. It is, in effect, a system that penalises prevention, and that is a system that cannot stand in a modern healthcare environment.

This bill responds to that problem in a targeted and proportionate way. Schedule 1 amends the Insurance Contracts Act 1984 to prohibit life insurers from using what is defined as 'protected genetic information' in underwriting decisions. That includes whether a person has undergone genetic testing, whether they have been advised to do so and the results of any such testing. The effect is clear: an insurer cannot refuse cover, vary terms or increase premiums based on predictive genetic information.

The bill also introduces enforcement mechanisms. It creates both a strict liability offence and a significant civil penalty for breaches, with regulatory oversight vested in ASIC. This is not guidance. This is not a voluntary code. It is enforceable law. And that shift from industry led restraint to legislative certainty is critical. It means that individuals no longer need to rely on policy settings that can be altered, withdrawn or interpreted inconsistently. It means that rights are clearly defined, enforceable and capable of being relied on in practice, not merely in theory.

It is important to be precise about what this bill does and what it does not do. It does not dismantle risk based insurance. Insurers will still be able to assess risk based on clinically diagnosed conditions, medical history and other relevant factors. What this bill does is draw a clear boundary. It says that predictive genetic information—information about what might happen in the future—cannot be used to deny Australians access to life insurance. That is a rational distinction. It recognises that genetic predisposition is not the same as a diagnosed condition, and it ensures that individuals are not treated as if they are already unwell simply because of what their genes might suggest. In legal terms, this reflects a careful balancing of competing interests. It preserves the principle of risk assessment while removing the category of information that is inherently uncertain, highly sensitive and not determinative of actual health outcomes.

It is also necessary to acknowledge why legislative intervention is required. The current system relies heavily on an industry moratorium. That moratorium was a step forward, but it has not resolved the underlying problem. It applies only within certain policy limits. It relies on industry compliance rather than statutory obligation, and it has been the subject of confusion among consumers and health professionals alike. For many Australians, the question has remained unclear: if I get tested, will this affect my ability to obtain life insurance? Where that question cannot be answered with certainty, the rational response is caution, and in this context, caution means delay or avoidance of testing. That is precisely the outcome this bill seeks to correct.

This reform is not occurring in isolation. It reflects a broader shift in how we think about data, privacy and fairness in the 21st century. Genetic information is deeply personal. It is not just about an individual; it can have implications for families, future generations and communities. Unlike many forms of information, it is not something a person chooses; it is something they are born with. That is why it demands a higher level of protection. This bill recognises that. It acknowledges that, while insurers have legitimate interests in assessing risk, there must be limits on how that risk is assessed. There are certain types of information, particularly genetic information, that should not be used to determine access to essential financial products, and that balance is carefully struck.

The public health implications of this reform are significant. Genetic testing is an increasingly important part of preventive health care. It allows individuals to identify risks early. It enables clinicians to tailor interventions. It supports participation in research that benefits the broader community. There is also a broader public health dimension to this reform. Genetic testing is not just about individual outcomes; it is about collective benefit. When more Australians undertake genetic testing, we improve early detection, enable more targeted treatment, strengthen our understanding of disease and accelerate medical research. But that only happens if people feel safe to participate. If people are opting out, if they are declining tests or if they are withdrawing from studies because of insurance concerns, then we are all worse off. This bill removes that disincentive. It supports greater participation in genetic testing and research. It aligns our regulatory settings with our healthcare ambitions.

I want to return briefly to my own circumstances. When I was diagnosed with chronic kidney disease, it did not just affect me; it affected my family. It raised questions about genetic predisposition. It raised questions about what it might mean for my boys. That is where this bill becomes even more important, because the question is not just whether we should be protected; it's whether our kids should be protected—it's whether, in the future, they should be penalised if, out of an abundance of caution, on medical advice or to participate in research, they choose to undergo genetic testing. The answer, in my view, is unequivocally no. They should not face higher premiums. They should not be denied cover. They should not be put in a position where understanding their own health becomes a financial liability. This bill ensures that they will not be.

We're also at the point in medical history where genetic knowledge is increasingly actionable. In the case of kidney disease, there are now emerging treatments and new medications that can significantly slow disease progression and, in some cases, prevent kidney failure. That changes the equation entirely. A genetic predisposition is no longer a fixed destiny. It is information that can guide intervention. It is information that can improve outcomes. It allows clinicians to act earlier and with greater precision. But, again, that only matters if people are willing to access that information. This bill supports that shift from reactive health care to preventive health care.

I want to acknowledge the work of Kidney Health Australia and its ambition to end dialysis by 2050. That is an ambitious goal, but it is not unrealistic. It is grounded in early detection, better management and advances in treatment. It reflects a broader shift in health care from managing failure to preventing it. Genetic testing has a role to play in that future. It allows for earlier identification risk, it enables earlier intervention and ultimately it can reduce the number of Australians who progress to end-stage kidney disease. This bill supports that objective. It aligns financial settings with health outcomes. I also want to acknowledge the outstanding advocacy of Dr Jane Tiller, from Monash University, who has helped bring this issue out of the margins and into the national spotlight.

There is also an economic dimension to this reform. A system that discourages detection is, in the long run, more costly. It increases pressure on the healthcare system. It reduces workforce participation. It shifts costs from prevention into crisis management. By contrast, a system that supports early detection is more efficient. It keeps people healthier for longer, it reduces long-term costs and it supports productivity. This bill is consistent with that approach.

One of the most important features of this bill is the certainty that it provides. The existing industry moratorium has not delivered that certainty. It has been limited in scope. It has been poorly understood and has left too much discretion in the hands of insurers. This bill replaces that with a clear legislated framework. It gives Australians confidence that the rules are fixed, enforceable and fair.

In closing, this bill is about trust—trust that Australians can engage with modern medicine without fear of financial penalty, trust that their most personal information will be treated with care and respect, and trust that our systems, both health and financial, are working in their best interests. By passing this bill, we reinforce that trust. We send a clear signal that fairness matters, that privacy matters and that the wellbeing of Australians, both physical and financial, matters. This bill is, at its core, about removing a false choice. Australians should not have to choose between their health and their financial security. They should not have to choose between knowledge and protection. They should not have to choose between participating in modern medicine and participating in the financial system. This bill ensures they do not have to make that choice. It is a measured reform, it is a necessary reform and it is a reform that reflects both the realities of modern medicine and the expectations of a fair society. For those reasons, I commend the bill to the House.

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