Sophie Scamps (Mackellar, Independent) Share 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. The bill amends the Insurance Contracts Act 1984 to prohibit life insurers from requesting, using or relying on the results of an individual's genetic tests when deciding whether to offer life insurance cover or the terms and conditions of that cover, including pricing and exclusions. This applies to genetic tests undertaken for clinical care, for research participation or for personal or preventive reasons. Genetic discrimination in life insurance will also be unlawful under the Disability Discrimination Act.

Life insurance in Australia encompasses insurance policies covering death, total and permanent disability, trauma and critical illness, and income protection, salary continuation or business expenses. The bill allows consumers to voluntarily disclose favourable genetic test results if they choose; for example, where the results indicate reduced genetic risk. Insurers may consider such disclosures but cannot require them.

The field of genetics has great potential to improve medicine and public health through enabling diagnosis, prevention and early treatment of disease. However, to date in Australia, the life insurance industry has been legally allowed to use genetic test results in underwriting, leading to what has rightly been described as genetic discrimination. In 2018, a joint parliamentary committee inquiry into the life insurance industry recommended that Australia urgently implement a ban on the use of genetic test results in life insurance underwriting, similar to the moratorium that was operating in the United Kingdom since 2001. In 2019, the life insurance industry peak body, the Financial Services Council, or FSC, introduced a partial moratorium requiring applicants to disclose genetic test results only for policies above certain financial limits. The FSC moratorium has been industry self-regulated, with no government oversight.

To investigate the effectiveness of the FSC moratorium as a regulatory solution to genetic discrimination in Australian life insurance, the Commonwealth government funded the Australian Genetics and Life Insurance moratorium, monitoring the Effectiveness and Response Project, otherwise known as the A-GLIMMER project. This was funded from 2020 to 2023 through the genomics mission of the Medical Research Future Fund. The A-GLIMMER project reported that health professionals, consumers and researchers are all concerned about the life insurance industry's self-regulation of the FSC moratorium and its effectiveness. The majority of stakeholders expressed concern about the absence of any Australian government oversight, demonstrating that the FSC moratorium is inadequate to address and prevent genetic discrimination in life assurance insurance. The results are clear: 93 per cent of health professionals, 88 per cent of patients with experience of genetic testing, 78 per cent of the general public and 86 per cent of researchers agreed that legislation is required to regulate the use of genetic test results in life insurance underwriting. That is why we're here today.

Patient testimonies from the A-GLIMMER project present a stark illustration of how a fear of discrimination has deterred people from undertaking genetic testing. A 34-year-old female interviewee who has a high risk result for hereditary breast and ovarian cancer, stated, 'Even in my extended family, there's quite a few people who haven't done genetic testing because they don't want to be denied insurance cover. They're not getting regular scans. They're putting their health on the back foot because of all of this.' Another study participant, Frank, whose father had Huntington's disease, was penalised by his insurance company prior to undertaking genetic testing. He was penalised with a 200 per cent premium loading due to his family history of the disease. Despite Frank subsequently receiving genetic test results that showed he did not inherit the Huntington's disease variant and was not at risk of the disease, the insurer refused to remove the loading unless Frank made a new application. Frank took the insurer to the complaints tribunal and a settlement was reached. The insurer refunded Frank's loading from the date he informed them of his genetic result on the condition he withdrew the complaint. It is scenarios like Frank's that this bill will ensure no longer occur.

This bill has been shaped by an extraordinary coalition of more than 60 stakeholders across the medical, research, legal and consumer sectors, who came together to produce a unified voice to government. It includes the Australian Medical Association, the National Heart Foundation of Australia, Cancer Council Australia, the Human Genetics Society of Australasia, Breast Cancer Network Australia, Rare Voices Australia, Genetic Alliance Australia, the Lung Foundation Australia and the Australian Alliance for Indigenous Genomics, alongside leading research institutions like the Murdoch Children's Research Institute and the Centre for Population Genomics. Together, these stakeholders came to a powerful consensus that, without legislative intervention, genetic discrimination will continue to undermine both individual wellbeing and the future of health care in Australia. At the heart of their concern is the reality that Australians have been penalised simply for accessing information about their own health. Individuals who have undertaken genetic testing, often on the advice of their doctor and often to prevent or better manage serious disease, have faced higher premiums, exclusions or outright denial of life insurance. In many cases, these are people who are not unwell but who carry a genetic predisposition. This is discrimination not on the basis of current health but on the basis of potential future risk.

The stakeholders also highlight that discrimination is not always direct and can occur in more subtle but equally harmful ways. For example, insurers may infer genetic information from a person's medical care, surveillance programs or family history, effectively using proxies for genetic test results. Furthermore, stakeholders warn of emerging risks as genomic testing becomes more widespread. One such risk is the potential for insurers to offer so-called discounts to individuals who disclose low-risk genetic results. While framed as a benefit, this would in practice create a two-tiered system where those without favourable results are effectively penalised. This is precisely the kind of indirect discrimination this legislation must guard against.

A key concern raised by stakeholders deals with the imposition of penalties, loadings, exclusions and other adverse action in existing contracts. Many Australians have done the right thing—disclosing their genetic test results in good faith—and have paid the price through higher premiums or restricted cover over many years. At present, the ban only applies to decisions about entering into new life insurance contracts. It does not apply to the enforcement of unfair terms on people who already have contracts of insurance in place with discriminatory terms applied.

The Council of Australian Life Insurers 2024 submission to Treasury reported that a small number of applications have received adverse underwriting outcomes on the basis of genetic results—only 90 out of 1,674. On this basis, the impact of removing loadings or exclusions prospectively for those already insured who have been discriminated against should be negligible in the context of the entire insurance market. Given the additional premiums collected from many of these individuals by insurers in the past, it's not unreasonable to ask insurers to proactively rectify the discrimination applied and cease to discriminate prospectively against current clients in a way that is unlawful for new life insurance applications. This is not a suggestion that insurers should retrospectively refund premiums but only that penalties should be removed prospectively. Insurers should identify which individuals have received adverse underwriting outcomes on the basis of genetic test results and remove these loadings and exclusions from each of them from the date of the ban's commencement. This does not require completely new underwriting to be done but merely for adverse terms applied on the basis of genetic results to be removed.

It's clear this legislation is urgently needed. Without it, the system would continue to discourage preventative health care, penalise individuals for seeking medical advice and undermine public confidence in both the health system and the insurance sector. Implementing this legislation will remove one of the most significant barriers to genetic testing in Australia. It will give Australians the confidence to access potentially lifesaving information about their health without fear of financial penalty, and it will ensure that advances in genetic and genomic medicine—advances that have the potential to transform health care through earlier diagnosis, more precise treatment and better prevention—can be fully realised for the benefit of all Australians.

To ensure the law keeps pace with developments in genomics and insurance markets, the bill currently requires mandatory reviews every five years of the genetic testing ban. I support the independent member for Kooyong's proposed amendment to change this mandatory review period to every three years—this is a rapidly changing field of medicine.

In closing, this bill is about restoring fairness and trust. It ensures that Australians are not penalised for seeking to understand their own health, and that medical advice, not financial fear, guides decisions about genetic testing. It reflects years of advocacy and a clear consensus that the status quo is no longer acceptable. This legislation represents a critical step towards ending genetic discrimination in life insurance and unlocking the full potential of the genomic medicine in Australia. I commend this bill to the House.

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