Mary Aldred (Monash, Liberal Party) Share this | Hansard source

It's a great privilege to rise to speak on this legislation, the Treasury Laws Amendment (Genetic Testing Protections in Life Insurance and Other Measures) Bill 2025, because it's an important piece of legislation. It's legislation that has been a long time in the making—too long—and it enjoys broad bipartisan support. In making my remarks, I'm going to acknowledge the work and great efforts of people like Dr Jane Tiller who have invested significant amounts of time, passion and expertise and a profound sense of equity and fairness in making sure that, this week, this bill gets to the start line and, I hope, through the Senate, the finish line as well.

The coalition is pleased to support this bill because it contains important reforms that Australians have been waiting for. They're sensible reforms. They're practical protections, they make sense and they make fairness around the use of genetic information in life insurance and improvements across our financial system. It's also a bill that highlights two consistent problems that have arisen at different times during the tenure of this government: reforms are delivered too slowly, and, even when there is broad agreement or bipartisan support, which the community hope for and expect from us as legislators on important issues like this, they take too long. The other point I wish to raise is about the scrutiny of public spending and where that is weakened and undermined.

I will deal with schedule 1 in my remarks, particularly around genetic protections, as they've been delayed despite years of bipartisan consensus and significant work by legal experts, ethicists, medical researchers and the broader community. This schedule prevents life insurers from using genetic-test results to deny or limit cover, ensuring Australians can access medical testing without fear or discrimination. Genetic testing can be life saving. It supports clinicians to prevent, diagnose and treat serious conditions, including hereditary diseases and cancer. No Australian should be discouraged from undertaking genetic testing because they fear it could affect their ability to obtain life insurance.

These reforms have strong bipartisan support and clear backing from clinicians, researchers and patient advocates. Indeed, they have enjoyed that support for years now, so the simple question is: why has it taken Labor so long to deliver this? In fact, the coalition had to drag Labor kicking and screaming to the start line for this legislation. In 2019, while in government, the coalition supported the introduction of an industry moratorium as an interim safeguard, with the clear expectation that legislation would follow. That meant, by the time of the 2022 election, there was broad agreement across industry, among clinicians and in the parliament that this legislation was needed, that its time had come and that the protections put forward were necessary and critical.

There's a broken promise by Labor, then, because we saw in September 2024 the then assistant treasurer Stephen Jones announce to much fanfare and lots of bells and whistles that Labor would be introducing legislation to ban genetic discrimination in life insurance. Great stuff—terrific and broadly supported! If only they had got on with the job and finished it! The announcement was widely welcomed, and it raised real expectations among ordinary Australians and the medical community. But, by the 2025 election, no legislation had even been introduced—no bill, no forward steps and no progress since that announcement, which had been made with bells and whistles, great fanfare, great media attention and with great acclaim and accolade for the government. Nothing was followed up.

Unfortunately, that is an analogy for a lot of serious stuff that we deal with in this parliament where there is a lot of fanfare and a lot of fuss but not a lot of follow-through. Australians were left waiting—and with real consequences. There was strong bipartisan support. There was no opposition. There was no reason why this legislation could not be introduced to the parliament in the previous term. We think about the consequences of that. We often talk in this place about unintended consequences, and we should have regard to that. I acknowledge that there are school students sitting above us, watching the proceedings in this chamber. We must give them hope and go about our work in this place with a real sense of purpose but also with a sense of priority. There could be no better example for wanting to expedite the process of this legislation in what we are discussing today.

The consequences of delay will now have, I think, an impact on generations of Australians yet to come, who really needed this legislation to come in earlier. People could have benefited from genetic testing, but they may have been discouraged from doing so because of the concerns about insurance discrimination, and there were very real concerns to be had about insurance discrimination, which is why we are debating and supporting the legislation before us today. Participation in medical research could well have been affected. We don't know, but we're fixing the problem now because the coalition supports these reforms, particularly around a sense of certainty and the need to prevent discrimination and to better support health outcomes overall.

There are many families in my electorate of Monash that have hereditary diseases, from cancer to heart disease, in their family. They want to make sure that they can get on top of these things early through the great benefits that genetic testing provides. But they should not have to expect—they should not fear—the discriminatory consequences of doing so. So this is very important legislation. The reality is this is a reform everybody agreed on from the start; except Australians were left waiting due to Labor's delays.

It's estimated that around 1½ million Australians undergo genetic testing every year. It's really important because the science around that helps promote and develop and implement preventive medicine and the developments that that is able to progress. However, some Australians have decided to refuse this testing that could potentially save their life because of financial concerns. I mentioned Dr Jane Tiller, who's a lawyer, genetic counsellor, public health researcher at Monash University—named after, of course, the great Sir John Monash, although it's not in my electorate! Dr Tiller has done some incredible work on this issue. I know she's in Canberra; I think she's in Parliament House today. I do want to acknowledge the very long time that she's spent on this issue and her helping as a really key person in getting it to this point of the legislative lens. I'd like to acknowledge Dr Tiller today.

Genomic research holds enormous promise for identifying genetic causes of disease and enabling earlier prevention and treatment. However, Dr Tiller recognises the fears around genetic discrimination in life insurance. Indeed, she's dedicated huge amounts of time and expertise to this very topic, and she notes that people's financial fears for themselves and their families are very valid. They do not want to disadvantage, particularly as we discuss so regularly right now, the cost-of-living crisis and the very real financial insecurity that people and families across Australia live with every day. These fears are entirely valid. In Australia, life insurers have historically been allowed to use genetic test results to deny coverage or to increase premiums. This has created a significant barrier to genomic research and clinical care. We don't know what we don't know. That is why research, clinical trials and clinical care are so very important.

I'm going to use a brave example: Meg Herrmann, a fit 25-year-old woman, who told the ABC that she underwent a preventative double mastectomy after genetic testing found she carried the BRCA2 mutation. Meg carried a 70 per cent lifetime risk of developing breast cancer—as well as making her more likely to develop ovarian, pancreatic and skin cancer. I really want to commend Meg for very bravely sharing her story so publicly. Meg underwent genetic testing after her mum was diagnosed with breast cancer. After undertaking the procedure, Meg's risk of contracting breast cancer reduced by 95 per cent, but her decision came at a cost to her financial future. As a person who was a BRCA2 gene carrier, Meg said she would never be able to 'take out more than $500,000 in life insurance cover'. As a reference point, this is about $240,000 lower than the median house price where she lives. Meg says:

… yet, a smoker can go on and ask for a higher level of cover—

in the example that she has given to the ABC. This is not fair and this is not right. She says:

They might pay a higher premium, but they can.

This is where the discrepancy in fairness, in justice, in an equity of outcome has been experienced by many Australians right across Australia.

I commend brave people like Meg for sharing their stories so vulnerably and so charitably. I commend researchers and advocates like Dr Jane Tiller. I think it is a great moment for this parliament at a time where we quite rightly have a very robust contest of ideas on a number of contentious issues—and this place should be a place of strong debate. But I think there are some topics where the community and the broader public want to see us come together as a parliament to champion an issue and to progress a cause that is worthy of support, and this bill does just that. I'm very pleased to be part of a coalition who has had a strong track record of supporting this issue, and I'm very pleased to commend this bill to the House.

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