“We welcome the significant and long-overdue news that the Senate has passed legislation to ban the use of genetic test results in life insurance.

This reform marks an important step forward for patients. Concerns about potential insurance implications have long acted as a barrier for individuals considering genetic testing, even when it is clinically recommended.

Removing this barrier will not only support more informed healthcare decisions, but also improve the genetic counselling process. It will enable genetic counsellors and patients to spend less time navigating insurance concerns and more time focusing on understanding and managing genetic health risks.

Overall, this is a positive and necessary change that will help ensure genetic information is used to support better health outcomes, rather than limit access to essential services.”

"Genetic testing results allow for changes in health behaviours or medical management which reduce a person’s risk of developing the condition in the future. Examples include hereditary breast and ovarian cancer or familial bowel cancer. However, fear of life insurance discrimination has deterred patients from undergoing genetic testing. A government enquiry in 2017 led to an industry led moratorium on the use of genetic test results in insurance underwriting on policies up to a certain value ($500K). However, the policy limits were low and there were low levels of confidence with the lack of oversight for an industry-led initiative. Thus, neither patients nor clinicians were reassured. Now, after years of engagement with members of parliament, a bill has been passed by both the House of Representatives and the Senate which makes it illegal for life insurance companies to request genetic test results in underwriting. As someone who has been an active researcher and advocate in the genetic non-discrimination space for over a decade, I am overjoyed to see this legislation approved by parliament. It will have a life changing impact on the lives of patients and families."

“It is just extraordinary to be here after almost a decade of advocacy, with an actual piece of legislation that will protect everyday Australians.

This law will give people the safety to have genetic testing without worrying about the possible implications for their life insurance.

It paves the way for government investment in preventive genomic screening for adults, through programs like Monash’s DNA Screen, knowing people won’t have to weigh up preventive health against financial fears.

DNA Screen has already shown tangible, life-saving benefits for hundreds of Australians. We need to offer preventive DNA screening to far more Australians to find people who are at risk of genetic conditions and prevent disease altogether or detect it at early, treatable stages.

Dozens of Federal parliamentarians spoke in support of the bill, highlighting the incredible level of political will towards this critical policy change. Dr Mike Freelander MP, a paediatrician who has championed the bill from the outset, described it as ‘one of the most important pieces of legislation to pass through this parliament in the 10 years I've been here’.”

"As a cancer researcher and someone living with type 1 diabetes, I strongly support the Senate’s decision to ban insurance companies from using genetic testing results.

Advances in genomics have transformed how we understand cancer risk, revealing that many DNA mutations increase susceptibility but do not guarantee disease. Conflating risk with certainty creates a powerful disincentive for individuals to pursue genetic testing, undermining early detection, prevention, and research participation.

I attended Science Meets Parliament 2026 and was fortuitously in Canberra when the legislation passed the House of Representatives. It was a remarkable moment—the session was paused as the news came through, and the room of scientists broke into spontaneous applause. That reaction reflected just how important this reform is to the research and medical community.

From a scientific perspective, genetic information only establishes probability, rather than complete certainty.

Protecting our personal genetic data from exploitation by insurance company and others for profit is critical to avoid penalising people for biology they cannot control, rather than supporting proactive health decisions. This legislation is a critical step toward ensuring that Australians can access genetic testing without fear of discrimination.

As an indigenous scientist, this is even more relevant. To be able to protect our genetic data from systems that have exploited indigenous people in many ways and for centuries, is a significant advancement. This may even lead to greater participation in nationwide screening programs to close the gap even further in indigenous health.

Importantly, this will also strengthen medical research. When people feel safe to engage with genomic medicine, we gain more accurate data, better insights into disease mechanisms, and ultimately more effective treatments.

Policies like this align ethical responsibility with scientific progress — protecting individuals while enabling innovation that benefits the entire community."

"The news is certainly welcome for consumers. Whilst the insurance industry is facing incredible challenges, they need to look into other areas of product development, operational efficiency and overall productivity to increase competitiveness - rather than these questionable routes. Between the typical force majeure and ‘pre-existing medical condition’ clauses, and a myriad of other restrictions in-between, insurance firms are increasingly turning the odds in their favour, unfairly some may argue.

Some insurance firms may counter and say that all they are doing is innovating – isn’t that what they are meant to do? Yes, but innovations must be guided by strong ethical process and standards that go above and beyond legal requirements. It goes to the heart of fairness to their customers.

The world in which the current business model of insurance firms were established to serve is in the past. The insurance business model needs a radical rethink.

Insurance firms need business models that places the needs of people, from all walks of life, at the centre and one that is quick in adopting/recognising innovations (e.g. technological, social innovations) that can help customers to reduce their premiums - to at least match the speed at which some business models adopt innovations that enable firms to ‘justify’ increasing premiums."

"The passage of the Treasury Laws Amendment (Genetic Testing Protections in Life Insurance and Other Measures) Bill 2025 represents a major law reform with respect to both Australian insurance law and discrimination law. This reform brings Australian law in line with countries such as the United Kingdom and Canada, which have banned insurance companies from using genetic information for many years. The willingness of Australians to participate in genetic testing and genomic research has considerable public health benefits.

However, concerns about how genetic test results will be used to potentially deny insurance is a significant disincentive to participate in both genetic testing and genomic research, particularly where there is a potential for secondary uses of this information. Specifically, this bill limits the use of genetic information in life insurance to situations where the person themselves or their medical practitioner have consented to providing that information. Further, even where provided with consent, a life insurer cannot use this information to disadvantage the insured. Accordingly, these reforms are a welcome and necessary improvement over the previous industry moratorium, and will hopefully lead more people to undergo genetic testing."