Kara Cook (Bonner, Australian Labor Party) Share this | Hansard source

I still remember walking through the city on my lunch break in Brisbane many years ago, when my phone rang and my dermatologist's number came up. I had had regular skin checks since I was 16. I grew up in central Queensland, in a small town called Yeppoon. I spent long days at the beach and did competitive sailing with not a lot of protection, and it had its consequences. Over the years, I had many biopsies. My last routine check before that phone call, a suspicious mole was removed, and, this time, it came back. That phone call was life-changing for me. It was a melanoma, and I was 27 years old. In the years that followed, I was diagnosed with two more melanomas in different locations. In total, I had three melanomas diagnosed before I turned 30. After that, I sought support from the Cancer Council Queensland, I joined fundraising efforts like the Melanoma March, and I enrolled in clinical trials, hoping that my experience might help others.

It was during those trials that I first encountered the challenges around genetic testing. I remember being told that participating and providing DNA samples could affect my ability to get life insurance. I was asked whether I wanted to know if there were any indicators of future illness and warned about the consequences of receiving those results.

At that time, as someone who was under 30, it was a pretty confronting conversation to have. When faced with your own mortality and with choices about whether to proceed with receiving those results, I do remember wondering how many people would opt out, how many people would choose not to know because of the complications for them with their life insurance? How many would potentially walk away from life-saving treatment and testing not because of the fear of the illness but because of the fear of the financial consequences that might follow for them and, most importantly, for their family. That is why I rise today to support the Treasury Laws Amendment (Genetic Testing Protections in Life Insurance and Other Measures) Bill 2025.

This legislation is about giving Australians certainty—certainty that they can take steps to protect their health without being penalised for it. For too long, Australians have faced discrimination based on their genetics when seeking life insurance. Insurers have been able to refuse cover, increase premiums or impose conditions on genetic test results. That's exactly what happened to me with an exemption around skin cancer. The result of that is clear; people do delay or avoid testing altogether, even when it could save their lives. This bill changes that. It ensures that life insurers cannot use protected genetic information to refuse cover, raise premiums or impose conditions. It means Australians will no longer have to disclose genetic test results when applying for life insurance, and it gives Australians the confidence to participate in medical research and take control of their health without fear.

This is not just a policy issue; it is a human issue and it is an issue of fairness. We have seen what happens when protections are not strong enough. The industry's self-regulated moratorium was a step forward, but it has not provided the certainty Australians need. Confusion still remains, trust is low and too many people still avoid testing. This is not a system that protects people; it is a system that holds them back, and this bill fixes that.

The need for reform is not abstract; it has very real consequences. Some people may have heard of the story of a Bundaberg mother, Judy Honor, who lives with Lynch Syndrome, a genetic condition that increases cancer risk. Her son Dwayne avoided genetic testing not because he didn't want to know about his health but because he feared the impact on his life insurance. Because of that decision, he also stepped back from participating in research. That is the consequence of the current system, and it's not an isolated case. When I spoke to researchers at the PA hospital where I did a number of clinical trials, they told me that they were struggling to get participants because of the genetic-testing consequences for people. Surveys and research have shown that many Australians delay or avoid testing for the same reason. Researchers have often reported difficulties in recruitment. Health professionals have overwhelmingly agreed that change is needed. When people are too afraid to learn about their health, something is fundamentally wrong in the system and does need to change.

We know that genetic testing saves lives. It enables early intervention, it guides treatment, it allows families to make informed decisions. We are entering an era where genomics is transforming health care from cancer detection to rare-disease diagnosis to targeted therapies, but that progress means very little if Australians are afraid to access it. This bill will ensure that those healthcare advances translate into real benefits for Australians, not more barriers.

Ten years on from that first diagnosis, I happily remain cancer free. I still have regular skin checks every six months and I continue to support clinical trials. I know how important it is for Australians to feel confident to do the same, because when people avoid testing, we will all lose—we will lose opportunities for early diagnosis, we will lose opportunities for prevention and we will lose progress in medical research. This bill will ensure that we do not suffer any of those losses and also that Australia keeps pace with the rest of the world. Countries like the United Kingdom and Canada have already acted to protect citizens from genetic discrimination.

Without reform, we risk falling behind not just in fairness but in science, so the choice before us is clear. I'm pleased to hear the support from all sides of the chamber on this bill. We know that we cannot allow fear and uncertainty to continue to hold Australians back. We can create a system that supports people to take control of their health, and this bill does exactly that. It will remove a major barrier to testing, it will support research participation, and it will restore trust in the life insurance system.

This type of research and testing also has the potential to reduce out-of-pocket costs. By detecting diseases early on, Australians will save extensive treatment and out-of-pocket costs down the track. That certainly was the case for me. Supporting Australians' health and being proactive in getting the health care they need is a priority for the Albanese Labor government. That is why we have implemented things like tripling the bulk-billing incentive. This will see over 4,800 more clinics convert to fully bulk-billed over the next four years, including 13 in my electorate of Bonner. This will mean that local families can continue to see a doctor for free. With cheaper medicines, Australians can get the health care they need when they need it. They won't put off looking after their health. It also eases the financial pressure that many families experience when faced with incredibly hard decisions between things like groceries and medication due to cost-of-living pressures.

The Albanese government has made medicines cheaper. Residents in my electorate have saved more than $12.8 million across two million scripts. From 1 January, we have seen the cost of PBS medications drop to just $25 per script. Since being elected, Labor has added over 300 new and amended listings to the PBS. Those listings have saved families hundreds of thousands of dollars, and, through the $800 million women's healthcare package, we are seeing much needed treatment for women and girls being made cheaper and more accessible. With more medicines listed on the PBS, it's also enabled more than 365,000 women to access more than 715,000 cheaper scripts for oral contraceptives and menopausal hormone therapies.

Labor has also invested more than $49 million to provide around 430,000 more services to help women across the country with complex gynaecological conditions, including endometriosis, polycystic ovarian syndrome and chronic pelvic pain. The women's healthcare package includes the first new listing of oral contraceptive pills in more than 30 years, saving 150,000 women hundreds of dollars every year. By making health care more affordable, more Australians will put their health first. This bill is one more piece of that work.

What this bill really says is simple—no Australian should be judged by the genes they are born with. No Australian should be denied life insurance because of a condition they may never develop. Genetic information is not destiny. It is not a guarantee of illness. It does not predict when a condition might appear, how severe it might be or whether it will happen at all. This bill restores fairness, it restores dignity and it restores trust in the life insurance system. No Australian should have to choose between knowing their health risks and securing life insurance to provide financial security to protect their family. This is practical and compassionate reform. It strengthens our health system. It supports our research sector, and it reflects modern science. It will also protect our families, and it will ensure that Australians can take control of their health without fear. I am proud to be part of the Albanese Labor government that is ending this form of discrimination. The message is very clear with this bill: your genes are not your fault, your health decisions should not determine your insurability, and your future should be shaped by your choices, not your DNA. I commend the bill to the House.

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