Alison Byrnes (Cunningham, Australian Labor Party) Share this | Link to this | Hansard source

I rise to speak in support of the Treasury Laws Amendment (Genetic Testing Protections in Life Insurance and Other Measures) Bill 2025. At its heart, this bill is about fairness. It is about ensuring Australians are not penalised for taking steps to look after their health. It is about removing a barrier that has for too long forced people into an impossible choice—a choice between finding out potentially life-saving information about their future health and protecting their ability to access affordable life insurance. This is not a choice that anyone should have to make, and it is a choice that this bill will end. Genetic testing is one of the most powerful tools we have in modern medicine. It allows doctors to identify risks early, it allows patients to take preventive action and it allows families to understand inherited conditions and make informed decisions. In many cases, it quite literally saves lives.

We are moving into an era where genomics is not just about treating disease but preventing it all together, but the law has not kept pace with that science. For too long Australians have held back from genetic testing because of the fear that it could be used against them by life insurers, and that fear is not hypothetical. Treasury analysis and stakeholder evidence make it clear that people are delaying or even avoiding genetic testing and participation in medical research because of concerns about life insurance. That means worse health outcomes and missed opportunities for early intervention, and it means a system that is working against people, not for them. This bill fixes that.

Schedule 1 delivers a clear and decisive reform. It bans life insurers from using adverse genetic test results when making decisions about life insurance cover, including whether to offer a policy and on what terms. That means Australians can undergo genetic testing without worrying that the result will be used to deny them cover or increase their premiums. It restores certainty and confidence and it puts people's health ahead of insurer profit margins. Importantly, this reform is carefully designed. It does not undermine the fundamentals of the insurance system. Insurers will still be able to use relevant information to assess risk. They can still consider symptoms, diagnosis and family medical history. They can still ensure policies are properly underwritten, and individuals can still choose to disclose genetic test results where it benefits them, with appropriate consent. This is not about creating loopholes; it is about delivering fairness and drawing a clear line where discrimination should not occur. This bill also strengthens enforcement. It introduces civil penalties and criminal offences for noncompliance, and it gives the Australian Securities and Investments Commission the responsibility to oversee and enforce these protections. These are not symbolic changes. They are real protections, backed by real consequences.

We know this reform is needed because we have heard directly from Australians. We have heard from researchers and clinicians, and we have heard from participants in studies like the DNA Screen project at Monash University. That study tested 10,000 young Australians for genetic risk of preventable cancers and heart disease. What it found was striking. Around one in 50 participants had a high genetic risk of serious disease. That is not a small number; that is a significant portion of the population. For those individuals, that information gained through genetic testing opened the door to preventive care: surveillance, medication and, in some cases, life-saving interventions. In my electorate of Cunningham, at least 50 young people participated in the DNA Screen study. They were proactive. They wanted to understand their health risks and they wanted to take preventive action. But the main reason that people who signed up for DNA Screen decided not to participate was genetic discrimination in life insurance. This barrier to testing is not abstract; it is happening in communities, including in places like the Illawarra, and this legislation will remove that barrier.

The benefits of this reform go far beyond the individual. Greater uptake of genetic testing means better public health outcomes. It means earlier detection. It means more effective prevention. It means advances in scientific knowledge that benefit all Australians. It also makes economic sense. Published modelling shows that preventive genomic screening is cost effective, with productivity gains in the billions. This is not just good health policy; it is good economic policy.

This reform has been a long time coming. The use of genetic information in life insurance has been a policy concern for decades. There have been reviews, moratoriums and industry led approaches, but the evidence has been clear: those measures have not been enough. They have not provided certainty, they have not removed fear and they have not delivered the protections that Australians deserve. That is why legislative action is necessary, and that is why the Albanese Labor government is acting.

This bill also ensures that our laws are consistent. It aligns the Insurance Contracts Act and the Disability Discrimination Act so that genetic discrimination is clearly addressed. It clarifies that individuals are not required to disclose protected genetic information when applying for life insurance, and it ensures that antidiscrimination protections keep pace with advances in science. As technology evolves, our legal framework must evolve with it.

I also want to acknowledge the people who have worked tirelessly to bring this reform to this point. In particular, I want to recognise Dr Jane Tiller from Monash University for her leadership and advocacy over many years. Her work has been absolutely instrumental in highlighting the real-world impacts of genetic discrimination and in building the case for change. I also want to acknowledge the Assistant Treasurer for progressing this legislation and delivering on the government's commitment. I also want to recognise the former assistant treasurer and my good friend Stephen Jones for his work in advancing these reforms and laying the groundwork for what we are debating today. That was really important work that Stephen and his office did. This has been a sustained effort, and it deserves recognition.

The bill also includes a number of additional measures. Schedule 2 provides licensing exemptions for foreign financial service providers, giving Australian businesses and investors access to a greater diversity of investments, new sources of financing and lower costs through increased competition. This will support diversification and strengthen our financial system. Schedule 3 modernises Australia's legislative framework for multilateral development banks and the International Monetary Fund. It reduces administrative burden and ensures that Australia can continue to participate effectively in international financial arrangements. Schedule 4 removes unnecessary regulatory burden on financial advisers by repealing a requirement for annual individual registration that is no longer needed.

These are important measures, but it is schedule 1 that goes to the heart of this bill because it speaks to a fundamental principle: Australians should never be punished for looking after their health. This reform is about dignity, fairness and trust—trust that, when Australians engage with the healthcare system, they can do so without fear; trust that the system will support them, not penalise them; and trust that the law will protect them. It is also about the kind of future that we want to build—a future where preventive healthcare is embraced, a future where medical research thrives and a future where advances in science translate into better outcomes for everyone. We cannot achieve that future if people are afraid to participate. We cannot achieve that future if outdated rules stand in the way, and this bill removes those barriers.

There will always be questions about how we balance fairness and risk in insurance markets, and it is important to acknowledge that. That's why this legislation includes safeguards. It's why insurers retain access to other relevant information. It's why the operation of these provisions will be subject to regular review. We are taking a careful and a considered approach, but we are also taking a necessary step because doing nothing is not an option. Australians deserve a system that supports their health decisions. They deserve a system that reflects modern science and they deserve a system that treats them fairly. This bill delivers that. It delivers on a clear commitment, it ends a longstanding inequity, and it ensures that Australians no longer have to choose between their health and their financial security. I commend this bill to the House.

Mike Freelander (Macarthur, Australian Labor Party) Share this | Link to this | Hansard source

Genetics has come a long way since Mendel and his peas in the 1860s, and it has been absolutely remarkable, in my medical lifetime, to see the advances in genetics. There was slow progress for over a hundred years until we got to the Human Genome Project, which really opened up the field of medical genetics to all of us in the 1990s and 2000s. The Human Genome Project was started in October 1990, and it was projected to take 15 to 20 years. In fact, it was done after 13 years, so it was finished early. This then opened up the field of human genomics to medical researchers and scientific researchers, which led to a tsunami of new treatments and new medical interventions in the last few years.

Just as an example, when I started my training as a paediatrician, about 90 per cent of people who had intellectual handicaps were described as being 'idiopathic'—in other words, no cause found. That is now totally the opposite, where 10 to 15 per cent were described as having an idiopathic intellectual handicap and over 90 per cent now have a cause, mostly genetic. We've done some remarkable things. We now have treatments for some of the previously fatal genetic disorders of childhood, for example, spinal muscular atrophy, which, in its most severe form, usually caused death by age 3. It now has a curative treatment available because of genetic intervention. We are doing remarkable things.

We know there are many inherited disorders that can cause disability in children that can be picked up by newborn screening. Now, over 40 are routinely tested for, and that is a remarkable change since my beginnings as a paediatrician, when only three or four conditions were tested for. There are remarkable differences, remarkable changes and medical advances that are leading to better health care and leading to good quality of life for many people who previously would have been quite disabled.

However, with that, there have come concerns about the availability of genetic information and how that is used by different organisations, including insurance companies, financial institutions et cetera. This is expanding very rapidly. We know that there are risk genes for a whole range of common disorders—diabetes, heart disease, stroke, cardiovascular disease.

Recently I heard from a group led by a paediatric colleague of mine, Srinivasan, who's an endocrinologist at the children's hospital, about a condition called familial hypercholesterolaemia. This is a condition where cholesterol is so high that it causes very early onset cardiovascular disease and heart attacks and sometimes death in the 20s and 30s. This can be prevented by treatment and can be picked up in very early childhood. There are lots of at-risk genes for a whole range of disorders. Many people have these tests done or have relatives who have these tests done. Through family history, that can affect people even though they may never have had a test done and may until that time be unaware that they are at risk of certain diseases.

We recently had a situation in Sydney at the Royal North Shore Hospital fertility IVF clinic, which, some years ago, made a mistake and inadvertently transferred two embryos to a mother who was not the genetic mother. Only recently, because of genetic screening through commercial program, were these twins found to be not the biological children of the person they thought was their mother for over 30 years. Genetics is remarkable in its advances, and it's a cascading situation where you're seeing more and more advances, but it also comes with some dangers if that information is not in the right hands.

This legislation delivers on the government's commitment to ban the use of adverse genetic test results in life insurance. We know already that some people are avoiding getting testing done because of concerns about that information falling into hands that could use it to financially affect them. I think there are other possibilities as well that we need to be thinking about. If this information gets into the hands of a prospective employer, it may sometimes affect their willingness to employ people, so we need to be very careful about how genetic information is allowed to be given to other people. Sometimes it may well be because of careful family histories that people are implicated as being at risk despite the fact that they may never have had a test done.

There are also concerns about access to genetic counselling and access to the correct information for many people who may have at-risk genetic profiles. I know that the government is working very strongly on that issue to make sure that people, if they do have at risk genes identified, are able to access genetic information. Before I go any further, I'd like to congratulate Professor Jane Tiller from Monash University for the work that she has done. She's here now and it's great to have her here. This project has taken so much time over such a long period of time, and Jane has been the one person who has never failed in her commitment to the cause. I congratulate her and thank her from the bottom of my heart for making sure that we were all focused on getting this bill through the House.

I would like to also thank my friend and colleague Stephen Jones for the efforts that he put in. It did take a long period of time to make sure that we were using the right information and that everyone was aware of the necessity for this bill and I thank Stephen for that. It's also fantastic to have in the House today Daniel Mulino, the Assistant Treasurer. I don't want to push him to think that I'm ingratiating myself with him, but he has been like a dog with a bone and has been the one person that has pushed this through the parliament, and he deserves the highest congratulations and thanks for what he has done.

There is clearly a long list of other people in the genetics community—genetics Australia et cetera have done an incredible job. My friend and colleague Mimi Berman, the previous head of genetics Australia, has been fantastic and really tireless in making sure that this legislation was to the fore. Kathy North from Genomics Australia has been a really fantastic advocate as well. And many of my paediatric colleagues have done a lot of work in this space and are really grateful that the government has brought this legislation forward.

Genetic risk is, of course, risk; it's not a certainty. But it is important that people can have certainty, when they do get genetic testing, that the information will only be in the hands of people who want their good, not other organisations who may use it for financial gain et cetera. The Treasury's analysis is clear that some people are holding back from essential testing and even from participating in research projects because of concerns about their genetic information being used against them. That is not good enough. This government has been really focused on making sure that there is certainty, and this legislation will give that in letting Australians know that their genetic information will be used for their good and no-one else's in the first instance. Their decision to undertake genetic testing must be made on a medical basis. People must be sure that it won't jeopardise their access to life insurance or force them into more expensive or restrictive policies, and it should not affect other insurance.

These reforms will support greater uptake of genetic testing and, in particular, participating in medical research. We have a government and a health minister that are focused on supporting our medical research community. That means better prevention, earlier treatment and, really, stronger and more focused research that will improve public health across the country and allow us to participate in international programs and take advantage of advances in scientific knowledge that will benefit every Australian.

This legislation has been carefully designed, and it has taken some time. Once again, Minister Mulino needs to be congratulated for making sure that that's the case. Individuals can volunteer their test results if they've given their consent to other organisations, and insurance providers can still use family histories and diagnoses to make sure that policies are properly risk rated. We're delivering fairness, we're delivering certainty, and we're delivering knowledge to the people who can best use it in a healthcare setting. We're acting because vulnerable Australians deserve a system that supports their health decisions, and we are acting because this government is focused on 21st-century health care that not only provides protections for people but also provides incredibly strong public health policy. It will make sure that people won't feel disadvantaged if they do undertake genetic testing or if their other family members undertake genetic testing. Genetic testing, we know, can save lives and improve quality of life, and, certainly, in the paediatric space, it can help in a whole range of things, including family planning.

The bill makes amendments to the Insurance Contracts Act to implement the ban and related amendments to the Disability Discrimination Act to make sure Australia is aligned with antidiscrimination laws. It makes sure that genetic testing can still be used to improve quality of life, save lives and support medical researchers to prevent, treat and monitor a whole range of disorders, including inherited metabolic disorders, genetic disorders and, in some cases, genetically based cancers and cancer predispositions. And, of course, in families of Ashkenazi Jewish origin, like mine, they have a higher risk of certain cancers if they carry the so-called BRCA genes, the BRCA1 and BRCA2 genes. Many of us, without even knowing that we carry at-risk genes, can be reassured that, if we do get tested, the information will be used in the right way.

Across the parliament there's pretty uniform agreement on this legislation, and this is something the whole parliament can be congratulated on. It's one of the most important pieces of legislation to pass through this parliament in the 10 years I've been here; I really do feel that. This will open the way for further advances in health care based on genomics that we know will be coming towards us as a tsunami in the next few years. The people that have promoted this bill—I'll mention Jane Tiller again, from Monash University, and Stephen Jones, Daniel Mulino and many other members of parliament that we've heard speak—need to be proud of the fact that this parliament is looking to the future in health care by introducing this legislation. I congratulate my paediatric colleague Monique Ryan, who's here today, who I know has also been a very strong supporter of this legislation, as have many other members of parliament—too many to mention.

We should all be proud that this is something we are doing that will advance health care for many years in the future in Australia. It's great to be a member of a parliament that can make this happen to benefit all Australians, and to be involved in 21st century health care around the world. I'm proud to be here on the day that this legislation is being debated. I'm wearing the badge of Genetics Australia, and I'm proud to do that. I thank all my colleagues who have supported this legislation.

Scott Buchholz (Wright, Liberal Party) Share this | Link to this | Hansard source

Let the Hansard note that the honourable member for Macarthur referred to the member for Kooyong.

Tony Zappia (Makin, Australian Labor Party) Share this | Link to this | Hansard source

It's always a pleasure to follow and listen to the remarks of the member for Macarthur, who brings so much valuable insight into the health issues that our nation faces. That was a wonderful example in his contribution to this bill, the Treasury Laws Amendment (Genetic Testing Protections in Life Insurance and Other Measures) Bill 2025. This legislation, in fact, has four schedules. Schedule 1 limits the use of genetic information by life insurers—that is the matter the member for Macarthur focused on a moment ago, and which I will come back to in my own remarks; Schedule 2 provides licensing exemptions for foreign financial service providers; Schedule 3 modernises and streamlines Australia's participation with multilateral development banks; and schedule 4 repeals stage 2 financial adviser registrations with the Australian Securities and Investments Commission.

This is good legislation because it bans life insurance companies from taking into account the results of or information about a person's genetic testing when deciding whether or not they will offer life insurance cover and, if they do, determining the terms and conditions. The ban brings Australia into line with similar approaches in other countries, including the UK and Canada, who banned the practice some time ago. As the member for Macarthur pointed out a moment ago, this is a matter that's had a long history. Indeed, back in 2023 I wrote to the minister for health about this very issue, and it is good to see this legislation now before the parliament.

Once this legislation is enacted, any breaches of the ban will be subject to a criminal offence and civil penalties, with the Australian Securities and Investments Commission being the regulating body. I understand that health insurance providers in Australia are already prevented from using genetic testing to deny cover or increase the cost of premiums. If that is the case—and it is—life insurance should be no different.

This legislation is not simply about stopping discrimination; it is also about saving lives and better managing the health of individuals and the health system of the country. Genetic testing is an effective health management advancement—the member for Macarthur spoke eloquently about that—and it should be encouraged. However, the current use of genetic testing by life insurance companies is a disincentive for people to have genetic health tests. If people make use of genetic testing, they are likely to have a much earlier diagnosis of serious illness and therefore begin earlier, and possibly life-saving, treatment. The ban, however, does not prevent individuals from volunteering genetic test results and the use of these volunteered results in underwriting where this would not adversely impact the life insurance cost and terms.

I also note that this legislation has been the subject of extensive public consultation and public discourse for probably the last decade, if not longer. In 2018, the life insurance industry inquiry of the Parliamentary Joint Committee on Corporations and Financial Services recommended a ban on the use of predictive genetic test results in life insurance underwriting be urgently implemented. That was some eight years ago. Today, after so much time, we are finally in a position where legislation has come to this House. Again, as the member for Macarthur did, I acknowledge the work of so many other people, including the members of that committee that I referred to, for their work in bringing this issue before the parliament eight years ago.

But along the way there have been many others. The member for Macarthur mentioned Jane Tiller, whom I have also met with and whom I also congratulate on her commitment to and focus on this work over several years. Jane is from Monash University, and I met with her in my office on a couple of occasions. She, along with her with some of her other colleagues, including Associate Professor Paul Lacaze from Monash University and Professor Margaret Otlowski from the University of Tasmania, have carried out considerable research over the years into genetic testing and life insurance. I want to quote only one section of a paper that they provided to me at the time. It was a briefing paper related to this issue, which talks about Australia's obligations under certain human rights provisions that we are now signatory to. It says:

Australia's international human rights obligations require prohibition of genetic discrimination

Australia's international human rights obligations, including Article 6 of the United Nations Universal Declaration on the Human Genome and Human Rights (UDHGHR) and Article 25 of the UN Convention on the Rights of Persons with Disabilities (CRPD) … require a prohibition on discrimination based on genetic characteristics, and …specifically refers to discrimination in the offer of life insurance.

It is very clear and very pointed that genetic testing should not discriminate when it comes to life insurance. That was the basis on which I suspect much of Jane Tiller's work was focused. I've got no doubt that the work she and her colleagues have carried out has been influential in this legislation finally coming to the House.

Other speakers have covered this issue very well, and I don't want to go over everything in detail, but in summary —and this is my view of this legislation—not everyone in Australia has life assurance, and many of those people don't have life assurance because genetic testing puts a barrier in front of them. That is, if they have a genetic test and it shows up certain health issues, then it is likely that they will either pay higher premiums or won't even get life assurance at all. That practice has to stop.

But genetic testing is also good for the nation as a whole. If more people undertake genetic testing, it means that we as a nation have a better understanding of the health issues that that the nation is facing. And if we have a better understanding of the health issues that the nation is facing, our health strategy is much more targeted and much more focused. That, in turn, means that, in the long term, we will have a much more effective health strategy for the nation.

We know that health costs are one of the major costs facing governments of all persuasions, both federal and state. If we're ever going to get on top of managing the health costs of this nation, we need to better understand what the issues are, and we're not going to do that if people are discouraged from doing what now has become a fundamental test—that is, genetic testing—that provides so much insight into a person's health issues. So, when we have a snapshot of that across the nation, it will actually save the nation costs, as well as, as I said earlier, individual costs, not to mention possibly life-saving treatment that would otherwise have been missed because the genetic testing was never carried out.

I thank the minister who's at the table for his role in bringing this to the parliament. I also thank the previous minister, who did a lot of the groundwork on it as well, because, as the member for Macarthur said, this has been an effort of so many people to bring it to the parliament. As the member for Macarthur quite rightly points out, this is important legislation, and I commend it to the House.

Daniel Mulino (Fraser, Australian Labor Party, Assistant Treasurer) Share this | Link to this | Hansard source

Firstly, I would like to thank those members who have contributed to this debate, and I briefly acknowledge a few people who are in the chamber and also in the gallery for their contribution. I echo the words of previous speakers and acknowledge the work of Dr Jane Tiller, who has been working on this measure for many, many years. I remember first encountering this issue when I was on the Joint Committee on Corporations and Financial Services, and Dr Tiller, along with her colleague Paul Lacaze, gave a very detailed and compelling briefing. She had been working on this for a long time before that and has continued her advocacy along with other colleagues. Jane Tiller is an example of advocacy that is very impactful.

I also say that, through acknowledging Dr Tiller, there are many other experts and organisations who have contributed experts in medicine, in the law and in public policy, and I'm not in a position to acknowledge all of them. But, through her work, I want to acknowledge all of the others, and there are probably some of them in the gallery and in the building today. I acknowledge my predecessor Stephen Jones and his work on this. He made a lot of groundwork, as the previous speaker indicated, but also made key decisions, and that is extremely important. I acknowledge the member for Macarthur, who spoke very eloquently on this. I acknowledge his advocacy on this particular measure but also the great expertise and depth of knowledge and passion that he brings to issues right across the spectrum in this area. His views carry a great deal of weight in this area.

I also acknowledge that we have, in the chamber, members from across a range of parties. We have the member for Makin, who has just given a very thoughtful contribution; the member for Kooyong, who I know has an interest in this; and the member for Cowper, who I've worked with on this issue and others. Indeed, when we gave a major press conference to announce the imminent release of exposure draft legislation, we had members from across all the parties, and that to me reflected the fact that, on issues like this, this place operates well and best when we work together and draw on the expertise from right across this place. I want to acknowledge that we have a range of members in this place and acknowledge the thoughtful contribution from the member for Makin but also that the other members who are here have also contributed to this issue.

Schedule 1 of the bill implements the government's decision to ban life insurers from using information about an individual's genetic test results to inform the offer of life insurance cover or the terms and conditions of the cover that is offered. This provides certainty to individuals that undertaking genetic testing, either for personal medical reasons or as a participant in medical research, will not impact their ability to obtain life insurance cover or the terms and conditions of that cover. It is intended that the ban will lead to the uptake of genetic testing and therefore maximise the opportunity to realise the extensive individual public health and scientific benefits of genetic testing. As a number of speakers have indicated in the debate, the benefits of this testing for the individual and for society more broadly are expanding all the time.

Schedule 2 to the bill delivers on the government's commitment to ensuring that Australian professional and wholesale investors have access to the cross-border financial advice services they need by providing licensing exemptions to foreign financial service providers. The exemptions are designed to encourage the offering of foreign financial products and services in Australia to diversify investment opportunities for Australian professional and wholesale investors. ASIC will also be empowered with civil penalty provisions and other oversight and enforcement tools. With the schedule allowing ASIC to gain enhanced regulatory powers, ASIC can engage in stronger oversight of foreign financial service providers. The government is taking action to provide investors with access to global investment opportunities and increased competition in the Australian market.

Schedule 3 to the bill streamlines and modernises Australia's legislative framework for multilateral development banks and the IMF. The schedule reduces administrative and legislative burden and ensures that Australia does not fall behind in its ability to participate in future financing arrangements within these important institutions. These changes will also allow Australia to formalise agreements with the World Bank and the Asian Development Bank announced as part of the 2024-25 MYEFO.

Schedule 4 of the bill repeals schedule 2 of the Financial Sector Reform (Hayne Royal Commission Response—Better Advice) Act 2021 and implements the government's decision to no longer proceed with stage 2 of the registration process for financial advisers. This would have otherwise required individual financial advisers to register themselves annually with ASIC from 1 July 2026. This maintains the current system, which requires Australian Financial Services licensees to apply to ASIC to register their authorised financial advisers, and is consistent with the objective of removing unnecessary regulatory burden for individual advisers. Further, the operation of stage 1 registration has proven sufficient to meet the policy objectives of a functioning and effective disciplinary system. I commend the bill to the House.

Scott Buchholz (Wright, Liberal Party) Share this | Link to this | Hansard source

The immediate question now before the House is that the amendment moved by the honourable member for Kooyong be agreed to.

Question negatived.

Original question agreed to.

Bill read a second time.

Message from the Governor-General recommending appropriation announced.