Monique Ryan (Kooyong, Independent) Share 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.

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