Matt Keogh (Burt, Australian Labor Party, Minister for Veterans’ Affairs) Share this | Hansard source

Officially, they are called 'in-valids'. They are the healthy ill. They don't actually have anything yet—they may never have. But, since few of the preconditions can be cured or reversed, it is easier to treat them as if they were already sick. This is a quote from the film Gattaca, nearly a quarter of a century ago, that might describe an imaginary future world, but discrimination on the grounds of genetic status, very sadly, is not science fiction.

In my first parliamentary term, I was part of the Parliamentary Joint Committee on Corporations and Financial Services, and one of our inquiries was into the life insurance industry. The terms of reference for this inquiry went to the need for further reform and improved oversight of the life insurance industry; the benefits and risks to consumers of the different elements of the life insurance market; whether entities were engaging in unethical practices to avoid meeting claims; and possible reform and oversight of the industry. Throughout the inquiry, concerns were raised about privacy and genetic discrimination relating to genetic testing in health care, and to this end I want to pay particular tribute to Jane Tiller and the great advocacy work that she has been doing, prior to that inquiry and ever since, to ensure that legislation like this can come to fruition today.

At the completion of the inquiry, there were a number of recommendations—9.1 to 9.4—that went to this issue, recommending that the Financial Services Council, in consultation with the Australian Genetic Non-Discrimination Working Group, assess the consumer impact of imposing a moratorium on life insurers using predictive genetic information unless the consumer provides genetic information to a life insurer to demonstrate that they are not at risk of developing a disease. Despite this work on a moratorium—and, in some ways, because of it and the self-regulatory approach—a legislative approach is needed. Some of us are not surprised.

Fast-forward eight or so years and we now have this legislation before the parliament—legislation that our government committed to in its first term. During the course of this debate, those opposite have tried to take issue with the fact that we announced this legislation a year or so ago and we're bringing it forward now, but they had five years, after the committee that I was a member of provided its report to the then government, in which they did nothing. So I find it a bit rich that they now complain about us having taken action to progress this legislation during our first term in government.

Genetic testing saves lives through getting in early and preventing disease. This bill delivers on the Albanese government's commitment to ban the use of adverse genetic test results in life insurance. We're protecting Australians from being discriminated against for playing an active role in their own health care. Life insurers will no longer be able to use an individual's adverse genetic test results to determine whether they can get cover or to set terms for that cover. We are changing the law to put people's health needs ahead of insurers' profit margins. Genetic testing does save lives, and Australians should not have to choose between their health and their ability to access life insurance. This bill will make sure that we're keeping people well for longer.

Under the current law, Australians have been delaying or avoiding genetic testing because they are worried about being penalised by insurers or being refused insurance, including through superannuation, or facing exorbitant premiums. We are fixing that. The passage of this legislation ensures Australians', especially those at high risk of inherited conditions, decision to undertake genetic testing that may enable them to undergo treatment that could save their life, or indeed demonstrate that they will not have that condition, will not jeopardise access to life insurance or force them into more expensive or restrictive policies. This includes conditions like breast cancer.

Genetic testing can be used to identify a fault or a mutation in the BRCA genes, which increase the risk of developing breast and ovarian cancer within a family. This testing can help individuals make decisions about how to reduce their risk of breast cancer and what sort of surgery you might want if you have been diagnosed. Unfortunately, the statistics bear out what my oncologist friends tell me. They have to warn patients that results may have to be disclosed to life insurers, and it may negatively affect their ability to be insured. This results in many, despite family history, not getting tested when they should so that they can make their own properly informed life decisions.

Our intention is that these reforms will support greater uptake of genetic testing and thereby save lives. It will also mean more Australians will be willing to participate in much-needed genetic research to save many more lives in the future, without the risk of becoming uninsurable. That means better prevention, earlier treatment, stronger public health outcomes and advances in scientific knowledge that benefit every Australian.

Although genetic testing is on the rise, a recent study from Monash University saw more than half of people who signed up to participate then subsequently discontinued their involvement in the study because of concerns around accessing affordable insurance. In this DNA screening study, some 10,000 Australians between the ages of 18 and 40 were assessed for their risks of preventable cancer and heart disease. Seventy-three of those were from my community of Burt in Perth's south-east. They found that one in 50, or two per cent, of those tested are at high risk. This information armed these individuals with the knowledge to be able to then do something about it. They were able to access preventive treatments and early interventions, and make lifestyle changes that would benefit them in the long run. But more than half of potential participants who had the opportunity to be armed with this information lost out, unable to prioritise their own health due to a fear of hip-pocket pain or risk to their family's long-term financial security.

Australians have had to choose between genetic testing that could save their life and potential financial implications for their life insurance. This bill will end that discrimination and that fear, and enable Australians to make decisions about genetic testing and genetic research without worrying about life insurance. These amendments ensure our antidiscrimination laws keep pace with modern science. We are aligning the Insurance Contracts Act and the Disability Discrimination Act so Australians have certainty and protection rather than fear and confusion when making decisions about their health. We shouldn't have to be relying on oncologists and medical professionals to advise of the need to seek further financial advice at a time of dealing critically with one's health.

This reform has real consequences for non-compliance as well. It establishes civil and criminal penalties and places enforcement authority with ASIC, which ensures these protections are backed by strong oversight. We are acting because vulnerable Australians deserve a system that supports their health decisions, not one that punishes them. This will have positive outcomes in the long run for our economy too.

We're getting ahead of disease. By treating people early and enhancing prevention, people are well for longer. This enhances productivity in the billions. People will be able to work and contribute to our economy for longer because they will be well. It will also mean we are able to continue to undertake great advances in medical science by having people able to participate in research.

The Albanese government is delivering these protections so that people can take charge of their own health, fixing a problem those opposite ignored despite the pleas from the committee of which I was a member. This bill does many other things in other schedules. I support all of them, and I commend the bill to the House.

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