Monique Ryan (Kooyong, Independent) Share this | Hansard source

Genetic testing and genomic research are essential to improving prevention, care and treatment for individuals and their families and for reducing Australia's burden of chronic disease. The legislation before the House, the Treasury Laws Amendment (Genetic Testing Protections in Life Insurance and Other Measures) Bill 2025, prohibits life insurers from using genetic test results to discriminate against applicants when offering life insurance cover. It's a long-overdue reform which represents a significant shift in how genetic information can be used and misused outside clinical care. The legislation will help decouple decision-making in health from financial penalties and disincentives for individuals and their relatives.

For decades, concerns about insurance implications have contributed to hesitancy around genetic testing. Individuals at risk of hereditary conditions, like inherited cancer syndromes and neurodegenerative disorders, have often delayed or declined testing due to their fears that the results could affect future life insurance access or premiums. That issue was highlighted by the Australian Law Reform Commission back in 2003, when it recommended that improved safeguards should be applied to the insurance industry's use of genetic information for underwriting processes.

Removing insurance related barriers increases the likelihood that individuals will engage with genetic testing earlier, that they can act on those results sooner and that they can participate more fully in risk management, early treatment and clinical trials. Early identification of genetic risk also reduces the need for late stage interventions, and it will decrease hospital admissions. Genetic testing can also inform treatment of those people who've already been diagnosed with health conditions by predicting their response to medications, immunotherapies and other forms of treatment. Pharmacogenomics is increasingly improving targeting and the cost-effectiveness of prescribing.

It's important to note that de-identified, de-aggregated genetic data is valuable input for scientific and medical research. It can be used to identify vulnerable populations, to contribute to workforce planning and to guide cost allocation in health. But, for decades, many Australians have deferred or declined genetic testing because of their very reasonable fears that discrimination will be applied when they attempt to obtain life insurance.

In a 2019 study of nearly 1,500 Australians, more than 80 per cent expressed significant concern about potential insurance discrimination based on their genetic data. Another Australian study found that the proportion of participants who declined genetic testing more than doubled when they were informed of its potential impact upon their insurance eligibility. Those fears were reasonable. Sector research released in 2021 indicated that about 10 per cent of individuals who had disclosed genetic test results had their insurance cover offered on less favourable terms or declined, despite the life insurance industry introducing a mandatory standard in 2019 which theoretically restricted the use of predictive genetic test results in their underwriting.

Individuals should be able to receive optimal health care without the fear that it could compromise their ability to obtain life insurance cover on reasonable terms. That's why I support these reforms, which will remove that powerful disincentive and which will encourage more Australians to benefit from potentially life-changing genetic testing. For many Australians, that legislation will be transformative. The bill will operate by regulation, ensuring that the legislation can remain effective, even in the face of very rapidly evolving genetic testing technologies, and individuals can consent to use of their genetic information in underwriting so long as it does not disadvantage them.

I'm also pleased that the bill protects the rights of genetic relatives. A person doesn't require the consent of their relatives to undertake genetic testing, but, in the absence of adequate legal protections, a young person's ability to obtain life insurance could well be compromised by decisions made by relatives that they've never actually met. It's absolutely vital that, as legislators, we protect all individuals from the possible downstream economic and personal effects of the testing of a relative as best we can.

Sadly, we can't protect all Australians from the health impacts of such scenarios. I well remember diagnosing a child with juvenile Huntington's disease, a heartbreakingly sad condition, which led to the inevitable cascade diagnosis of numerous other family members. That was a horribly difficult experience for that family to have to go through.

It is disappointing, though, that this legislation does not apply retrospectively. The bill will apply only to existing life insurance contracts when those contracts are varied, reinstated or extended, but not to automatic contract extensions. While it may have very significant benefits for those people who are yet to obtain life insurance coverage, those who've already had penalties or other discriminatory terms imposed by life insurers will still be discriminated against. They've possibly already been paying higher premiums for years, and they'll now be faced with the choice of either extending an unfavourable deal or negotiating new coverage on possibly poorer terms because they're older. It's also worth noting that those people who have applications in progress now are not protected from adverse decisions until the bill commences six months after it receives royal assent.

It's my belief that the government should not abandon those who have already been subjected to the discriminatory practices that this legislation should prevent in the future. The government also has to be mindful that life insurance is a pooled arrangement. While risk is shared across millions of people, an increase in claims because of this legislation could well have pricing impacts. We need to ensure that life insurance remains affordable for all Australians.

The government must ensure that the impacts of this legislation on the cost of life insurance are closely considered in its statutory review of this legislation. It's particularly important that life insurance companies do not infer genetic test results based on other data points, for example, information about other aspects of an individual's medical care, such as risk surveillance activities, the medications that they're prescribed, their participation in preventative healthcare measures, their involvement in clinical trials and other direct methods. These protections have to be enshrined in the regulations that accompany this bill. I call on the Treasurer to ensure that that happens, and I foreshadow here careful examination of those regulations as they're developed to ensure that this occurs. I ask the government to review these regulations and the impact of this legislation in this very rapidly moving field after three years, not five as is currently foreshadowed in this bill.

Despite these concerns, there is broad consensus about the bill from advocacy, research and peak bodies, as well as across the superannuation and insurance industry. The bill has been a very long time coming, and I acknowledge the tireless work of the advocates who have pushed for it, particularly Dr Jane Tiller from the Public Health Genomics Program at Monash University, who has advocated for this legislation for years and whose work on a sentinel study of the life insurance moratorium found it inadequate to address and prevent genetic discrimination in life insurance.

As a doctor and a medical researcher—and possibly the only person ever lucky enough to hold a seat in this House, who has actually identified new genes and who has actually described new genetic diseases—I'm uniquely placed to attest to the importance of genetic testing as an invaluable tool in the prevention, early detection and treatment of serious diseases. I bring to the House's attention the remarkable recent progress on carrier and newborn genetic testing in Australia. Research studies like Mackenzie's Mission, which investigated ways to deliver a large-scale, more-than-1000-gene national reproductive genetic carrier screening program, found that such testing is generally well-received, it is widely adopted and it is cost effective. Mackenzie's Mission should be the basis for the design and the delivery of a national reproductive genetic carrier screening program, which should be available to all Australians who are considering having children.

I also bring to the House's attention the DNA Screen program, which represented a world-first initiative to increase the prevention and early detection of cancer and heart disease in adults through population DNA screening. That study targeted high-risk, medically actionable conditions in which effective interventions could manage risk and prevent disease. Those conditions in that study were hereditary breast and ovarian cancer, Lynch syndrome and familial hypercholesterolemia.

A landmark study recently published in the Lancet identified significant productivity gains from the implementation of targeted, population based genomic screening. There have been recent extraordinary advances in genomic-sequencing technology, which means that other conditions could easily be added to screening panels without a significant increase in test cost. But, for the moment, in this country, larger gene panels remain user pays, and that creates inequitable access to them. In 2023, carrier screening for cystic fibrosis, spinal muscular atrophy and fragile X syndrome was finally included under the MBS after decades of work by tired researchers like me.

Since that time, there has been huge uptake of this three-disease screen. In 2025, the screen was accessed by more than 123,000 of the 300,000 couples who are having babies in Australia. We should be developing, supporting and funding additional population programs for carrier testing and genetic screening, we should expand support under the MBS, and we should fund the genetic counselling and education required to support those programs so that Australians can make informed decisions about screening and so that they can be supported to navigate unexpected results. World-leading Australian medical research and clinical programs have demonstrated that these sorts of programs have real-world flexibility, and they are demonstrably cost effective.

I'd like to mention a former patient of mine who is now a constituent. Tom Strahan has Batten disease. It's a rare disorder which manifests with balance problems and seizures in early childhood. It used to be invariably fatal in childhood. After Tom was diagnosed at age 2, his parents found an enzyme replacement therapy trial in Italy and, with great effort and great resourcefulness, managed to get Tom onto that experimental treatment. That medication, Brineura, proved able to slow cognitive and motor decline in Batten disease, unexpectedly, by 80 per cent.

When the treatment was no longer available in Italy, Tom's parents, Kate and Antony, secured access for the medication in Melbourne. They had to fight for it. It wasn't, at the time, funded or approved here, but they prevailed. I can attest to the force of their natures in fighting for the wellbeing of their son at that time. It's now the case that all children with Batten disease in Victoria can access that treatment. It has radically changed their outcome and it has extended their life expectancy.

Newborn screening for Batten disease wasn't feasible when Tom was born, but it is now, and it would transform the lives of babies born with this and similar neurological and other conditions. Within a few years, babies found to have Batten disease on newborn screening could well be effectively cured within a few weeks with a single dose of gene therapy. All such treatments work best when they're given early. With proactive genetic diagnostics, we could be providing the very earliest possible access to such life-saving interventions for all Australian children.

As genetics increases its influence upon modern health care, policy changes like this one play a critical role in ensuring that scientific progress, particularly that made by world-leading Australian medical researchers, translates immediately and effectively into meaningful clinical benefit. Genetic testing is increasingly incorporated into everyday health care in Australia. By removing a key structural barrier to its implementation, this legislation reinforces the role of genetic information as a tool for empowerment to support earlier action, better planning and improved health outcomes across the lifespan. Given its importance, we should, as a nation with world-leading medical care and an outstanding research sector, be looking to more actively embrace new technologies in genetic diagnosis, and we should be providing their benefit to all Australians.

In closing, I move amendments (1) to (3) circulated in my name:

That all words after "That" be omitted with a view to substituting the following words:

"whilst not declining to give the bill a second reading, the House:

(1) notes that:

(a) genetic testing and genomic research are essential to improving prevention, care and treatment and reducing Australia's chronic disease burden;

(b) Australia has made remarkable progress on carrier and newborn reproductive genetic testing;

(c) genomic sequencing technology means that conditions can be easily added to a screening panel without significant increases in test costs;

(d) world-leading Australian medical research has demonstrated that such programs have real-world feasibility and demonstrable cost-effectiveness; and

(e) pathology items 73451 and 73452, covering genetic carrier testing for spinal muscular atrophy, cystic fibrosis and fragile X syndrome, were welcome inclusions to the Medicare Benefits Schedule in November 2023;

(2) calls upon the Government to heed expert calls to expand the Medical Benefits Schedule to:

(a) develop, support, and fund population programs for carrier testing and genomic screening; and

(b) identify couples and individuals at high risk of medically actionable conditions before conception or disease onset; and

(3) further notes that the above measures, along with restrictions on the use of genetic testing by the insurance industry contained in this bill, will encourage a greater uptake of genetic testing.

I commend this bill to the House.

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