Zali Steggall (Warringah, Independent) Share this | Hansard source

I rise to speak on the Treasury Laws Amendment (Genetic Testing Protections in Life Insurance and Other Measures) Bill 2025. I support stronger legal protections against genetic discrimination in life insurance, and I support a legislative ban, not continued reliance on industry self-regulation. At the heart of this debate is a very simple principle: Australians should not be punished for seeking information about their own health and genetic predisposition. If a person undertakes genetic testing to better understand their risk of disease, that should be recognised as responsible, forward-looking health care but not be used as a basis for making insurance harder to access or to afford, because that then disincentivises. It means that Australians will not go and get the testing they should because of the fear of not being able to then have life insurance. It's why the issue goes not only to insurance settings but also to fairness, access to preventative care and public trust.

For too long, the existing framework has created the wrong incentive. People have been left worrying that following medical advice, undertaking testing or participating in research could jeopardise their financial security. That's a profound policy failure. Genetic testing can help people act early, manage risk, make informed decisions, access preventative care and, in some cases, save lives. I have previously supported serious consideration of a legislative ban in this area, and I continue to take the view that legislation, not industry self-regulation, is the appropriate response when we are talking about life-and-death situations for so many Australians. The government's decision to legislate is therefore an important step, and it reflects years of advocacy, consultation and multipartisan work.

Ultimately, the reform is about giving Australians confidence that seeking potentially lifesaving information for themselves and sometimes their families because it will impact their kids and other aspects will not later be used against them in preventing them from accessing insurance. In Warringah, I have had a huge amount of correspondence on this issue from residents in the community urging me to support an expansion of genetic screening for disease prevention in adults—in particular, for those with predispositions to cancer and heart disease—and to understand that genetic aspect and how it can then impact children or prospective children. We have amazing organisations like the Fragile X Association, which is founded and based in Warringah. All of these areas rely on continued support for genetic testing. It is so important. Warringah residents want more funding and enacted protections for this critical issue to ensure that genetic testing does occur and has support.

Concerns about genetic discrimination in insurance are not new. For some time, patients, clinicians, researchers and advocates have warned that the use of predictive genetic test results in life insurance can deter people from getting tested and undermine confidence in both the health system and the insurance system. That concern was formally recognised in 2018 when the Parliamentary Joint Committee on Corporations and Financial Services examined the life insurance industry and raised concerns that the use of genetic tests results was adversely affecting participation in health research involving genetic testing. In response, the Financial Services Council introduced an industry moratorium in 2019. That moratorium was presented as an answer, but, in practice, it was only a partial and temporary fix. It fell short in several important aspects.

First, it relied on industry self-regulation, rather than protections enacted in law. That matters because public confidence is weaker when the industry is, effectively, left to supervise itself. And, in practical experience, that was found to be wanting. Second, it only protected people from having their genetic test results used against them up to certain insurance limits. For many families seeking a realistic level of cover to protect dependents, service a mortgage or maintain financial stability, those limits were too narrow. And, third, it did not resolve the broader problem of uncertainty. In the absence of legislated safeguards, people were still left unsure about their rights, the durability of the protections and what remedy they had if something went wrong. In other words, the industry led moratorium was better than nothing, but it's not the same as an evidence-based preventative public health policy.

Crucially, research and consultation since then have shown that the self-regulatory model did not solve the core problem. Evidence showed that people continued to delay or avoid clinical genetic testing because of their concerns about life insurance, and that goes to the heart of the policy failure. Predictive genetic testing is becoming increasingly useful in modern medicine, but too many people have feared that obtaining that information could later be used against them when applying for life insurance, trauma cover, total and permanent disability cover or income protection, and that's the wrong incentive structure. We should be encouraging Australians to access early testing where appropriate. We should be encouraging Australians to participate in research that advances knowledge and improves care. The existing framework applies quite a chilling effect on both.

By late 2023, Treasury had released a consultation paper on the use of genetic testing results in life insurance underwriting. By that point, there was already a significant body of evidence showing that the existing arrangements were not delivering confidence, clarity or fairness. The question was no longer whether there was a problem; the question was whether parliament and the government were prepared to address it properly. In 2024-25, the government moved towards legislation to prohibit the use of adverse, predictive genetic test results in life insurance underwriting. That was the right step, and it marked an important shift from temporary self-regulation to a clearer statutory framework.

I do welcome the government's move to legislate in this area. Moving from consultation and self-regulation to legislation is a meaningful and necessary step. Legislation provides greater certainty, strengthens public confidence and makes clear that it is parliament, not the industry alone, that sets the boundaries of what is fair. That shift matters because it's not a marginal issue. It sits at the intersection of health, financial security, consumer confidence and scientific progress. If we get this right, we remove a barrier to testing, early intervention and research participation. The stakes of the debate are high not just for insurance law but for the broader direction of preventative health policy in Australia. We want to make sure Australians are participating in research and are going to access testing early.

The bill addresses a central and pressing issue, but broader questions remain about fairness, antidiscrimination protections and how other forms of health or family information are treated in underwriting. In that sense, the bill is important but targeted. It addresses one specific problem—the use of protected genetic information in life insurance underwriting, including predictive genetic information—but it does not on its own address the problem of discrimination in insurance law. That means broader discrimination issues can remain. Even with this reform, insurers can still rely on other kinds of information in underwriting, such as diagnosis, symptoms and family medical history.

It's important to recognise that life insurance sits within a special exception under antidiscrimination law. So banning genetic test results does not automatically eliminate every unfair or differential outcome in underwriting, and that's why this bill should be seen as a major and welcome reform but not the final chapter. Parliament should support it while remaining alert to the broader question of fairness, loopholes, enforcement and consumer redress in life insurance. Legislation is important, but consumers too must understand their rights and have confidence that those rights can be meaningfully protected.

This bill is an overdue and necessary step that should be understood as part of a broader task: building a life insurance framework that is fairer, more transparent and better aligned with modern medicine. Ultimately, it's about whether Australians can seek potentially life-saving information about their health and the possible health implications of their children, without fearing that the consequences will follow them into the insurance market. And that's why I support this legislative ban on genetic discrimination in life insurance. This is about fairness, public trust and access to preventive care. It's about making sure that Australians are not deterred from testing, early intervention or research participation because they fear financial disadvantage. It's very important that we understand that but that more can still be done.

I welcome this bill and I urge the government to continue ensuring that discrimination when it comes to life insurance is addressed in all its forms.

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