Anne Webster (Mallee, National Party, Shadow Minister for Regional Development, Local Government and Territories) Share this | Hansard source

I rise this afternoon to speak to the Treasury Laws Amendment (Genetic Testing Protections in Life Insurance and Other Measures) Bill 2025. I will come to the bill in a moment; I want to first, as the shadow minister for regional health, talk about the importance of primary and preventive care.

Halting genetic discrimination in the life insurance industry is a good start on better health care. It's just the beginning. We are at a fork in the road when it comes to health care in this country, particularly in regional Australia, with an ageing population and burgeoning rates of chronic disease. Our health services are struggling to keep up in the cities, let alone in the regions. We cannot afford to continue investing in acute hospital based care if we are not adequately investing in preventive health care and primary health care.

The Australian health system does not prioritise prevention as it should, or in the way other countries do, with only two per cent of the Australian health budget targeted at prevention or public health. Other nations with similar health systems spent in excess of five per cent of their budget on prevention. We know in regional Australia how important primary and preventive health care is. As in many rural towns and localities, it is the only health care close to where you live. We don't have the urgent care clinics that Labor like to get up and thump their chests about. We don't even have the doctors; they vanished into metropolitan areas under rule changes Labor made as soon as they came to office in 2022.

Increasing funding for prevention via genetic testing is an important step. DNA screening found hundreds of people at high risk of cancer and heart disease who can now take action to prevent disease. They published health economic modelling that indicated it would be cost-effective to offer high-risk DNA screening to the whole Australian adult population. This sort of evidence for policy decision-making should not be ignored.

I am speaking today amid a fuel crisis in regional Australia, and I'm very concerned that regional Australians will postpone or cancel a visit to their doctor if they can't afford or even source the fuel to get to the doctor. It is high time the Albanese Labor government thought about policy for regional Australians, not just for metropolitan Australians, that considers their poorer health status. One of my constituents, from Kaniva, told me recently she had to cancel a health appointment in Horsham because her local service station was out of fuel. Labor has let that woman down. She couldn't access health care—so spare me the posturing about women's health. Labor is not doing enough to help regional women access the health care they need.

I note this is an omnibus bill with amendments across several unrelated areas of law—what a shock! I intend to speak today to schedule 1 of the bill, on genetic protections in life insurance. This is an issue close to my heart, and I have advocated in this space over a period of time, working with Dr Jane Tiller of Monash University, particularly in my past role in the shadow ministry in regional health—a role that I'm honoured to hold again as the shadow minister for regional health and regional communications. I've long been interested in the benefits of predictive genetic testing for prevention and removal of discriminatory use of this health information. I've spoken on this issue in parliament previously. I am regularly contacted by constituents from my electorate of Mallee who are concerned about discrimination in the life insurance industry based on genetic information and who laud the benefits of genetic testing for preventive health interventions. I acknowledge the tireless work of Dr Jane Tiller and her team at DNA Screen, Monash University, Melbourne, in this area. Dr Tiller is project co-lead at DNA Screen, a lawyer and genetic counsellor with a keen interest in the regulatory and ethical aspects of genomics and public health.

What does this bill do? The 'genetic testing protections in life insurance' schedule of this bill amends the Insurance Contracts Act 1984 to insert a new division banning life insurers from using or requiring protected genetic information when deciding whether to offer life insurance cover. This includes trauma, total and permanent disability or income protection policies often bundled with life cover. 'Protected genetic information' generally refers to results from predictive genetic tests—for example, for hereditary disease risks like BRCA mutations—but family history or already diagnosed conditions may still be usable. A related amendment to the Disability Discrimination Act 1992 aligns antidiscrimination protections with this ban to ensure consistency. The change aims to encourage Australians to undergo genetic testing for health or medical reasons without fear of being denied insurance or copping a loading on their insurance, which addresses a longstanding discrimination concern.

It is essential to see the provisions of schedule 1 of this bill pass both houses of parliament to remove disincentives that discourage Australians seeking preventative genetic testing, and that is because genetic testing saves lives. Genetic testing can enable prevention of disease in very high risk people, and there are more of them than most people realise. The DNA Screen study at Monash University tested 10,000 people aged 18 to 40 years for high genetic risk of preventable cancer and heart disease, finding one in 50—two per cent—cent at high risk. That is a lot of Australians. Monash's DNA Screen study found that those people were able to access preventative measures such as surgery, surveillance and medication.

Regional people are especially burdened by the types of disease that genetic testing can help prevent. The Wesfarmers health index 2025, based on 3.6 million real time SiSU Health Station checks from July 2024 to June 2025, ranks my electorate of Mallee as the most at-risk federal electorate in Victoria for cardiometabolic conditions, including obesity, type 2 diabetes and cardiovascular risks like heart attack and stroke. Coronary heart disease is the leading cause of death in regional Australia. This is not the case in major cities, where dementia is the leading cause.

The holistic burden of disease due to coronary heart disease—this means not just the impact of people dying, but of years spent living with illness—increases with geographic remoteness from 9.5 disability adjusted life years in major cities per thousand people to 21.3 in remote and very remote areas. The rate of cancer is highest in inner and outer regional parts of the country, at 512 cases per 100,000 people, which is higher than in major cities. Shockingly, the rate of survival with a cancer diagnosis reduces with geographic remoteness. Given the impact of cancer and heart disease in regional Australia is far greater than in our cities, it is essential we progress measures to reduce that risk by preventing disease where possible. Prevention and delay of chronic conditions increases quality years of life and decreases costs to the healthcare system.

Most notably, prevention saves the precious lives of dads, mums, sons and daughters—children. The loss of life is always tragic, but preventable loss is even more so. In regional Australia, access to healthcare services is a challenge. Vast distances, higher costs, challenges in recruiting and keeping the required workforce, and inadequate government investment—these factors all contribute. Regional people are well known to present to hospital with later stage illnesses, sicker than their city counterparts, often being hospitalised for conditions that were in fact preventable or could have been managed in primary care by a GP or nurse practitioner. With this in mind, it's not hard to see why I'm a strong advocate for interventions like preventive genetic testing, with the potential to identify risk factors for disease before they become life threatening, and encourage people to seek the care they need before it's too late.

Interestingly, it's not just older people who are interested in accessing genetic screening. Young Australians want preventive genetic information, too. The DNA Screen study was extremely popular, with tens of thousands of young people registering their interest in participating in the study. In my electorate of Mallee, at least 36 young people participated in the study. One young person was found to be at high genetic risk of bowel cancer and has now been able to access preventive health care.

The main reason that people who signed up for DNA Screen decided not to participate was genetic discrimination in life insurance. For decades this has been a significant ethical concern for Australians who have had to choose between genetic testing that could save their life and potential financial implications for their life insurance. This bill will end that discrimination and that fear and enable Australians to make decisions about genetic testing and genetic research without worrying about life insurance. This legislation will address the most significant barrier to testing for Australians and will pave the way for greater investment into preventive genomic screening.

The DNA Screen study hopes to expand its testing to 100,000 people. This would identify thousands more at-risk people, who will not have to worry about life insurance discrimination, and move towards a screening program to use genomics to prevent disease. We must move into an era of using genomics to prevent and get ahead of disease. Published modelling indicates that this screening is cost effective, with associated productivity gains in the billions of dollars. This makes very good economic sense.

It has taken too long for the Albanese Labor government to bring this legislation to the parliament. They shamefully abandoned their promise to protect Australians from genetic discrimination in life insurance in the previous term of their government, breaking a historic commitment made in September 2024. The pledge, publicly announced by the Assistant Treasurer, was a sign of hope for any Australian with a hereditary disease and was widely celebrated by clinicians, advocates, researchers and organisations across the country. Genetic life insurance discrimination discourages individuals from seeking vital genetic testing, denying them access to potentially life-saving information and treatment. The government's commitment was a landmark step towards ensuring equitable access to genomic health care for all Australians, offering security to individuals and families undergoing genetic testing.

There has long been broad agreement and support for this ban on life insurers using genetic testing to refuse cover, and it is disappointing that Australians have faced delays due to the incompetence of this government. This is an egregious example of the Albanese government's focus on announcements and grandstanding rather than the follow-through. Dr Jane Tiller from Monash University has been campaigning for a ban for almost a decade. With strong bipartisan support and no opposition, there is no reason why this legislation should not have been introduced to parliament sooner, as promised by the government. I am grateful—on behalf of all Australians, but especially regional Australians—that this bill is now before us, and I look forward to seeing the passage and implementation of this legislation in practice.

In closing, schedule 1 of this bill represents a long-awaited and profoundly important step towards safeguarding Australians from genetic discrimination, ensuring that individuals can seek life-saving genetic information without fear or penalty. For too long, the threat of insurance consequences has acted as a barrier to preventive health care, limiting the potential of modern genomics to reduce illness, improve wellbeing and save lives.

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