Basem Abdo (Calwell, Australian Labor Party) Share this | Hansard source

I seek to continue my remarks. In other words, the voluntary system and the effectiveness of industry self-regulation have not provided the certainty Australians need. When people avoid potentially lifesaving knowledge because of financial fear, government has a responsibility to act, and when people are avoiding potentially lifesaving medical knowledge because of financial fear, the government has that responsibility to step in.

This issue has also been examined by leading experts in genomic medicine. Dr Jane Tiller, the Ethical, Legal and Social Adviser in Public Health Genomics at Monash University, wrote recently about the significance of these reforms. She observed:

A bill that would ban life insurers from discriminating against Australians based on results of genetic testing has been introduced to parliament …

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It follows almost a decade of research, consultation, community pressure and political efforts to end this form of genetic discrimination.

That observation captures how we arrived at this moment. This reform has not emerged overnight. It has been shaped by years of research, evidence and engagement with clinicians, scientists, patient groups and the broader community.

Dr Tiller and others have also highlighted the central problem that this legislation addresses—the fear that genetic information may be used against people when they apply for life insurance. Research has shown that fear of genetic discrimination has been discouraging some Australians from undertaking genetic testing altogether, even when those tests could identify preventable disease or allow early treatment. It's a deeply troubling outcome, because genetic testing has the potential to save lives.

Tests that identify inherited risks, such as variants in genes which significantly increase the risk of breast, ovarian and prostate cancer, can enable prevention, early intervention and significantly improved outcomes. Genetic testing can change the future for people at risk of preventable disease. Yet, without proper protections, the very knowledge that could protect a person's health could also become their financial liability. That is precisely the situation this legislation seeks to resolve.

It is also worth noting that Australia is not entering new territory with this reform. Several comparable countries have already recognised the risks of genetic discrimination insurance and have taken steps to prevent it. In Canada, federal legislation passed in 2017 makes it illegal for insurers to require individuals to undergo genetic testing or the use of the results of those tests when providing services such as insurance. In the United Kingdom, a longstanding agreement between government and the insurance industry prevents insurers from using predictive genetic test results for most types of insurance. Across Europe, many countries have also implemented restrictions on the use of genetic data in insurance underwriting, recognising the unique ethical issues associated with genetic information. These reforms reflect the shared understanding across advanced economies.

Genetic information is fundamentally different from many other forms of medical data. It is predictive rather than diagnostic. It often relates to probabilities rather than certainty, and it can reveal information not only about an individual but about their family members as well. For these reasons, many countries have concluded that genetic data requires special protections. Australia is now taking an important step to align with those international standards.

This bill amends the Insurance Contracts Act 1984 to prohibit life insurers from using the results of genetic testing, or information about these tests, when deciding whether to offer life insurance cover or determining the terms and conditions of that cover. Importantly, this legislation strikes a careful balance. It does not prevent life insurers from assessing risk entirely. Insurers will still be able to consider information such as diagnosed conditions, symptoms and family medical history when underwriting policies. Those factors have long been part of the insurance system and will remain so.

The legislation draws a clear line around predictive genetic test results, because genetic information raises unique ethical and social issues. A person may carry a genetic variant associated with a disease, yet live their entire life without ever developing that condition. To penalise someone financially for knowledge of a possibility rather than evidence of illness is something many Australians instinctively recognise as unfair. This reform ensures that this does not happen, and it does so with strong safeguards. The legislation establishes strict liability and civil penalty provisions for breaches of the ban, and gives the Australian Securities and Investments Commission responsibility for monitoring and enforcing compliance. In other words, these protections will not just simply exist on paper; they will be backed by real regulatory oversight.

While schedule 1 represents essential reform in this bill, the legislation also contains several additional measures designed to modernise Australia's financial regulatory framework. Schedule 2 introduces licensing exemptions for certain foreign financial services providers, allowing them to provide services to Australian professional and wholesale investors under defined conditions. This will help ensure that Australian investors, including superannuation funds, can access a wider range of global financial services and investment opportunities. Schedule 3 modernises the legislative framework governing Australia's participation in multilateral development banks and the International Monetary Fund. These institutions play a critical role in supporting economic stability and development around the world, including in our own region. Schedule 4 repeals the planned stage 2 financial adviser registration requirement, reducing unnecessary regulatory burden while maintaining appropriate oversight of the financial advice profession.

Genetic science is advancing rapidly. Over the coming decades, genetic testing will become a routine part of health care. More people will learn about their inherited risks. More people will understand their biological vulnerabilities, and that knowledge has the potential to dramatically improve health outcomes. But if our laws do not keep pace with scientific progress, we risk creating a new form of inequality. We risk creating a world where people are penalised simply because they have access to better medical knowledge about themselves. That is not a future Australians would accept. A person's DNA should be a tool for better health, not a barrier to financial security, and the knowledge that could save your life should never be used against you. This legislation ensures that genetic knowledge remains a tool for prevention, for treatment and for better health, not a mechanism for discrimination. It is for those reasons that I commend this bill to the House.

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