Tania Lawrence (Hasluck, Australian Labor Party) Share this | Hansard source

Sometimes the law has to play catch-up with developments in science. Way back in the 1950s, science fiction writers like Alfred Bester in his novel The Demolished Man grappled with the idea that human potential might one day be biologically measured and then used to restrict people's lives. Science fiction is full of warnings about how knowledge and power can be misused.

Genetic testing, once the stuff of science fiction, is no longer theoretical. It is a part of modern healthcare, helping Australians understand their risks, take preventive action and, in many cases, save their lives or the lives of their children. But the rules governing how that information can be used have to keep up, and, because of that, Australians have been forced into an unacceptable position, weighing their health against their financial security. I'm glad to say that this is what this bill, Treasury Laws Amendment (Genetic Testing Protections in Life Insurance and Other Measures) Bill 2025, fixes.

In this place in 2024, I reflected on how genetic screening being so new can feel confronting, even unsettling, but also how it represents a profound opportunity for prevention and care when handled responsibly. This legislation supports people in their use of this technology because the evidence is clear. Treasury analysis shows Australians are delaying or avoiding genetic testing due to concerns about life insurance. Participation in research has also been affected. The departmental advice is backed by public reporting and independent research. For example, coverage of Monash University's DNA screening program highlighted that a significant proportion of participants withdrew or hesitated because of fears about insurance consequences. As reported by ABC News, concerns about life insurance were a key reason some Australians chose not to proceed with potentially life-saving testing.

That is squarely our business because, when people avoid testing, they miss the chance for early intervention, scientific progress is slowed, and health outcomes are worse. I have met with Dr Jane Tiller a number of times over the past three years to discuss the real-world impact of genetic discrimination and the urgent need for reform. Those meetings are the sort of meetings I like to have—ones that are grounded in evidence and experience. Doctor Tiller's work, particularly through the Australian Genetics and Life Insurance Moratorium: Monitoring the Effectiveness and Response, A-GLIMMER, report has shown that genetic discrimination is not hypothetical. It is occurring, and it is influencing behaviour.

Dr Tiller found that Australians were very variously declining or delaying clinical genetic testing due to fears about potential insurance discrimination. She also found that there was a general lack of knowledge in the community around whether life insurance companies were legally allowed to use genetic test results in underwriting, and that there was strong support for the proposal that government should introduce legislation to protect genetic test results and almost no opposition to that proposal. Some of the comments recorded in the studies are revealing. One respondent said:

… at the moment it is better to be in the dark …

Another admitted:

It has caused family members to hold off on very important gene testing …

A third stated:

… if I'm aware of my genetic condition and keep up with my screening, I don't think I should be discriminated against. I should be rewarded for being proactive …

This really is the nub. We all know that, in relation to any disease, early diagnosis is crucial. Dr Tiller and her group underline their work by reference to 'Shona', whose screening betrays a predisposition to breast cancer. With screening and treatment, her prospects are good. Without it, they are much worse and, at the same time, much more likely to occasion high costs to an insurer. It is simply the case that, when people choose not to know out of fear, we have a failure of the system to support healthy decisions.

The Australian Medical Association has publicly supported reform, stating that no-one should avoid a potentially life-saving test because they fear it could be used against them. That position has been widely reported, including in coverage by the Guardian, which highlighted the medical community's concern that insurance settings were undermining preventive health care. Similarly, reporting in the Sydney Morning Herald drew attention to the experiences of Australians who declined or delayed testing because of uncertainty about how results might be used by insurers.

Back in August 2023, Duchenne Australia held an event here in the parliament. Duchenne muscular dystrophy, or DMD, is the biggest genetic killer of boys. Early diagnosis and treatment can make a world of difference to a child's life, as treatment can slow down deterioration. We need to have a legislative framework that supports those families. I acknowledge my colleague the member for Macnamara, who brought a motion to the parliament then to help raise this awareness.

The current legal framework has been holding Australia back. This bill responds directly to that reality. It introduces a clear and enforceable ban on the use of adverse genetic test results in life insurance underwriting. It amends the Insurance Contracts Act 1984 and aligns with the Disability Discrimination Act 1992 so that our legal protections reflect modern science and community expectations. It provides certainty that Australians can engage with their health care without fear of financial penalty.

It is also important to be clear about what this reform does not do. It does not prevent insurers from assessing risk altogether. They will continue to rely on clinical diagnosis, symptoms and family history. The fundamentals of underwriting remain intact. This bill removes a specific and harmful practice: the use of predictive genetic information in a way that discourages people from protecting their health—not overreach, just targeted and proportionate reform.

In my earlier contribution in this place, I spoke about families who have benefited from genetic screening and were able to take preventive action because they had access to critical information. This is what this technology enables. But, under the previous framework, the same information could affect access to life insurance, so people hesitated. They questioned whether it was safe or not to know. As Dr Tiller's research has demonstrated, even the perception of disadvantage can be enough to deter people from acting. By removing this barrier, we will enable Australians to make decisions based solely on their health, not fear of material disadvantage. It will be good for individuals but will also support greater participation in research and strengthen the foundations of a more preventive healthcare system. When more Australians engage with genetic testing, we improve our understanding of disease, we enhance our ability to develop targeted treatments and we build a stronger and more resilient health system.

The legislation has civil and criminal penalties for breaches, with oversight by ASIC. Laws must evolve alongside our knowledge. Genetic science has advanced rapidly. Our understanding of prevention and personalised medicine has grown. It is our responsibility to ensure Australians can benefit from those advances without unintended harm.

I spoke about the changes being based squarely on the evidence of harm created by the current laws. This legislation also reflects something fundamental about fairness. Fairness is at the heart of Labor policy. Australians believe in a fair go. They believe that people should not be penalised for taking responsible steps to protect their health. I agree, and I commend the bill to the House.

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