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

I was really enjoying the assistant minister's contribution, so apologies for taking up some of his time. I rise to speak in support of this bill and particularly the reforms contained in schedule 1, which will prohibit life insurers from using genetic test results to discriminate against Australians seeking life insurance. At its heart, this reform is about something very simple. It's about fairness. Australians believe deeply in the idea of a fair go. We believe people should not be penalised for things beyond their control. We believe that the benefits of modern science should improve lives, not create new barriers or new forms of discrimination.

Until now, the rapid advance of genetic science has outpaced our laws. Genetic testing is transforming modern medicine. It enables earlier detection of risk, identification of inherited conditions and more personalised treatments, often helping prevent illness or managing it far more effectively. As the Assistant Treasurer said when introducing this bill to the House:

Genetic testing can help save lives, supporting medical practitioners to prevent, treat and monitor a range of cancers, cancer predisposition syndromes and other heritable conditions.

These are not abstract benefits. They are real improvements in people's health and wellbeing.

Genetic testing can identify the inherited risks of cancers, heart disease and other serious conditions long before symptoms appear. With that knowledge, people can undertake monitoring, preventive treatment, lifestyle changes and medical interventions that significantly reduce their risk. In other words, genetic testing gives people the power to act early to protect their health and the wellbeing of their families.

The uncomfortable truth is that many Australians have been hesitant to take advantage of these life-saving technologies. The question is: why? It's because they fear that what they learn about their genetic risks might be used against them when applying for life insurance. For years, researchers, doctors and patient advocates have warned about this problem, and the evidence backs this up.

A recent genetic testing study conducted by Monash University found that more than half of the participants who withdrew from the study did so because they were concerned about the impact genetic testing might have on their ability to access affordable insurance. Think about that for a moment. People were participating in medical research—research that could improve their own health outcomes and potentially save the lives of others—and yet many felt compelled to walk away because they were worried that knowledge about their own DNA might come with financial risk. That is not how a modern health system should work.

One of the participants in that study was Ben. Ben did not have a significant family history of cancer, but he chose to take part in a genetic testing study. The results revealed that he carries a genetic variant, which increases the risk of prostate and breast cancer found amongst men. That information proved to be critically important not only for Ben but for his family. His female relatives were able to undergo testing, understand their own risks and take preventive action. Ben himself has begun adopting strategies to reduce his risk and monitor his health. In other words, genetic testing did exactly what modern medicine intended it to do. It gave a person and their family the information they needed to take control of their own health. The fact that Ben's story comes from a research study where many participants withdrew because of insurance concerns tells us something deeply troubling. Too many Australians are still being forced to make a choice between protecting their health and protecting their financial security. That is a choice nobody should have to make. That is the problem this legislation seeks to address.

This reform has also been the subject of extensive consultation, research and evidence. The government did not arrive at this legislation lightly. For years, there has been growing concern from researchers, clinicians, patient groups and the broader community about the impact of insurance practices on genetic testing. A parliamentary inquiry into the life insurance industry raised the issue as far back as 2018, warning that the use of genetic test results in insurance underwriting was discouraging Australians from participating in research and even in undertaking clinically recommended testing. In response, the industry introduced a voluntary moratorium in 2019, but it was always understood that this arrangement would need to be monitored carefully. Treasury subsequently released a national consultation paper to examine the issue in detail and seek views from stakeholders across medicine, research, the insurance sector and the community.

The evidence that emerged from that consultation was clear. Australians continue to report difficulties accessing insurance after genetic testing, and some avoided testing altogether for fear of financial consequences. Stakeholders also raised concerns about the moratorium and had a lack of confidence in its consistent application. In other words, the voluntary system and the effectiveness of industry—

Debate interrupted.

See this speech in context