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

by leave—I move the amendment circulated in my name:

(1) Schedule 1, item 3, page 10 (line 18), omit "each fifth anniversary", substitute "each third anniversary".

I have moved this amendment to the Treasury Laws Amendment (Genetic Testing Protections in Life Insurance and Other Measures) Bill 2025. This important bill recognises that we have to remove disincentives for people who want to access life-saving genetic testing. The amendment that I am moving strengthens that intention by requiring the minister to commence and complete the statutory review of this legislation sooner than the government currently proposes—in fact, as soon as is practicable after three years, rather than five.

The government's bill specifies that statutory reviews must consider whether the legislation is effective in providing reasonable certainty to individuals about the use of protected genetic information in relation to contracts of life insurance and whether these provisions have any unintended consequences. There is, in fact, good reason to suspect that future reviews will identify disadvantage arising from the failure of this bill to offer retrospective application. As it stands, people who have already had penalties, loadings, exclusions or discriminatory terms imposed upon them by life insurers will continue to face discrimination unless they seek to negotiate new coverage. The implications of this inequity are going to have to be closely monitored.

The bill provides that regulations may prescribe what information is protected by genetic testing. This ensures that the legislation will remain effective, even in the face of rapidly evolving genetic testing technologies. But it's absolutely vital that insurance companies do not bypass the protections created by this legislation by inferring genetic test results based on other data points—for example, information about other aspects of their medical care such as risk surveillance activities, prescribed medications, participation in preventative health care, involvement in clinical trials and other indirect methods. An earlier review would help pick up whether or not this unintended consequence materialises. It's also to be hoped that timely and evidence based reviews will identify a significant uplift in the number of Australians who are accessing genetic testing, free of concerns about their insurability.

Even with the enactment of this legislation, a discriminatory barrier to accessing genetic testing remains. Many Australians will continue to struggle with the out-of-pocket cost of many forms of genetic testing. For example, non-invasive prenatal testing is the most accurate screening test for most genetic conditions, but it currently attracts no Medicare rebate. Families are still being expected and asked to pay $400 to $500 out of pocket, which is an unaffordable sum for many households. It's not simply a cost issue; it is an equity issue. A study from Monash University found that these out-of-pocket expenses are the No. 1 barrier preventing Australians from accessing non-invasive prenatal testing.

In 2023, new Medicare items were introduced to cover carrier testing during pregnancy for cystic fibrosis, spinal muscular atrophy and fragile X syndrome. This was a very welcome and very overdue step, but it underscores how inconsistent and how incomplete Medicare coverage for genetic testing remains in this country. Australians should not face financial barriers when it comes to vital information about their health or about the health of their unborn children.

As medical science advances very quickly, the gap between our clinical capacity and policy settings continues to grow wider. This bill attempts to bridge part of that divide by curtailing discriminatory insurance practices in relation to genetic testing. My amendment furthers that aim. But we have to continue to consider broader gaps in our policy settings which continue to lead to healthcare discrimination, and that includes price discrimination.

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

The government supports the need for reviews and the benefit of reviews, but does not support this particular amendment. Three-yearly reviews may not be sufficient to adequately assess the impact of the ban. Once the ban is implemented, it will take time for its impact to fully develop, and three years may not provide enough time for this to occur. Additionally, undertaking a statutory review every three years is likely to give rise to a significant administrative burden with potentially less than commensurate benefits. Three years is likely not enough time to effectively implement and monitor the impacts of any legislative changes arising from recommendations in prior reviews.

Terry Young (Longman, Liberal National Party) Share this | Link to this | Hansard source

The question is that the amendment be agreed to.

Sophie Scamps (Mackellar, Independent) Share this | Link to this | Hansard source

by leave—I move amendments (1) and (2) as circulated in my name together:

(1) Schedule 1, item 3, page 5 (lines 22 and 23), omit "Regulations made for the purposes of this subsection have effect despite anything else in this section.".

(2) Schedule 1, item 3, page 6 (lines 26 to 28), omit "Regulations made for the purposes of this subsection have effect despite anything else in this section.".

I rise to speak in support of the Treasury Laws Amendment (Genetic Testing Protections in Life Insurance and Other Measures) Bill 2025. This legislation establishes a statutory ban on insurers using the results of genetic tests when offering or pricing life insurance.

While I strongly support this bill, I will be moving two amendments to strengthen it. These amendments respond to concerns raised by the Australian Human Rights Commission regarding sections 33E(2) and 33F(5) of the bill. As currently drafted, these sections allow regulations to override the definitions of key terms, such as 'genetic testing' and 'protected genetic information'. Specifically, the provisions state that the regulations 'have effect despite anything else in this section'. This means that regulations could, in effect, redefine what constitutes protected genetic information, even if that contradicts the definitions set out in the legislation itself. This creates a risk that the scope of protections could be narrowed in the future. In doing so, it dilutes the strength and certainty of the ban. It is not appropriate for regulations to have the power to limit or expand the meaning of terms that are so central to the operation of the legislation.

While the explanatory memorandum suggests that this flexibility is needed to keep pace with advances in medicine, the Australian Human Rights Commission asserts that this is not sufficient justification for such an extensive delegation of power. They argue that substantial changes to the meaning of prescribed terms should only be done through legislative processes and appropriate scrutiny. My proposed amendments remove from sections 33E(2) and 33F(5) the words:

Regulations made for the purposes of this subsection have effect despite anything else in this section.

This will safeguard against any future narrowing of the protections in this bill, whilst still allowing the legislation to evolve appropriately through proper legislative processes.

This bill is the culmination of years of advocacy from medical professionals, researchers and consumer advocates who have consistently called for change. For too long, Australians have faced what has rightly been described as genetic discrimination in life insurance, where the results of a genetic test, often undertaken to better understand or prevent disease, could be used against them. The Australian Medical Association and Monash University's Public Health Genomics unit have cited research that shows that fear of insurance discrimination has deterred many at-risk people from having potentially life-saving genetic testing. The Human Genetics Society of Australasia has highlighted that patients have delayed or declined testing even when there is a strong family history of serious disease. The Public Health Association of Australia has pointed to broader public health implications, noting that reduced uptake of testing limits opportunities for early intervention and prevention. Consumer groups, including the Cancer Council Australia, have emphasised the very real human cost of missing the chance for early detection because they fear being penalised financially. This bill responds directly to those concerns and has been welcomed by the Council of Australian Life Insurers as giving Australians more certainty and empowering them towards better health outcomes. I'd like to acknowledge and thank the Assistant Treasurer for his very constructive engagement with the sector in developing this legislation.

In closing, this bill represents an important step forward for fairness, for public health and for the future of personalised medicine in Australia, and I commend these amendments and the bill to the House.

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

I begin by acknowledging the contribution of the member for Mackellar on this subject matter over a period of time. I make clear that the government will not be supporting this particular amendment.

The government recognises the importance of this legislation in futureproofing the ban and ensuring it continues to operate effectively, particularly as health and medical technology continue to advance. The purpose of the regulations is to enable the legislation to promptly respond to health and medical advancements which might necessitate modifications to the operation of the ban. The legislation establishing the ban is complex and it is important that it is futureproofed, particularly in the early stages of its implementation. The inclusion of the wording is important to putting it beyond doubt that the regulations can override the primary law, particularly where there is overlap. Without the wording, there could be confusion as to whether the primary law or the regulation takes priority, and it may ultimately limit the ability of the legislation to keep pace with ongoing advances in health and medical technology.

Importantly, any regulations made under the proposed bill would be subject to disallowance, ensuring parliamentary oversight and control over delegated legislation is maintained and in this case, including any impacts on the operation of the primary law. Justification for the inclusion of the wording is in the explanatory memorandum at paragraphs 1.71 to 1.73 for subsection 33E(2) and paragraphs 163 to 165 for subsection 33F(5).

Terry Young (Longman, Liberal National Party) Share this | Link to this | Hansard source

The question is that the amendments be agreed to.