Andrew Leigh (Fenner, Australian Labor Party, Assistant Minister for Productivity, Competition, Charities and Treasury) Share this | Hansard source

Ian has familial hypercholesterolaemia, a condition which leads to high cholesterol levels and the risk of heart attack at an early age. He's on cholesterol-lowering medication which controls his cholesterol levels, and when he applied for life insurance, those levels were similar to or lower than the general population. But because he had a genetic result, he had a loading placed on his premium. 'Ian' is a pseudonym, but the story is very real and it's a story that's being repeated across a host of different contexts.

A 2021 survey by the Association of Superannuation Funds of Australia found that around 10 per cent of individuals who disclosed a genetic test result had insurance cover offered on less favourable terms or had cover declined. Other countries have long banned insurers from discriminating based on genetic information. The UK has had a ban in place since 2001, but in Australia many people are deterred from getting genetic testing because of the fear that it might drive up the cost of getting life insurance. They're having to choose between looking after their health and looking after their financial security.

This is a particular problem given how great the improvements have been in genetic testing over recent decades. The cost of sequencing a full genome has gone from millions of dollars and many years down to hundreds of dollars and minutes. The ability of those genetic screens to detect conditions has significantly improved. The Royal College of Pathologists has found that 95 per cent of people carry at least one genetic variant that affects their response to commonly prescribed drugs, and the Australian Medical Association says that genetic testing has 'the capacity to rapidly transform health care in Australia'.

The ability of life insurers to distinguish between applicants based on genetic history can have implications for particular ethnic groups. For example, Jewish people are 10 times more likely than the general population to have a high-risk variant of the BRCA1 and BRCA2 genes, which significantly increase risk of breast, ovarian and prostate cancers. The ability of life insurers to discriminate based on genetic tests effectively places a larger burden on Jewish Australians. I commend the work that has been done by Jane Tiller and fellow researchers, and indeed some of the examples that I've quoted have been drawn from the A-GLIMMER final stakeholder report, of 2023. As others in the debate have noted, this has been an issue of long standing. I commend the former assistant treasurer Stephen Jones and the current assistant treasurer, Daniel Mulino, for their work in bringing these reforms to the parliament.

This bill aligns the Insurance Contracts Act and the Disability Discrimination Act so Australians have certainty and protection, not fear and confusion, when they're making decisions about their health. Genetic testing saves lives, and we have more and more examples of tests which are revealing genetic variants. I mentioned before the BRCA1 and BRCA2 variants. There is also the PALB2 variant, which raises the risk of prostate and breast cancer in men. The presence of large datasets linked to genetic information is improving the quality of the information that can be gleaned from genetic testing every day. In coming years, we can expect the cost of genetic testing to fall and the information provided by genetic testing to improve. We can expect that getting a genetic test will be more valuable in determining your risks of cancer, your risks of having an adverse reaction to particular drugs and your risk of passing on a disease to your children.

It is important that Australians are able to take advantage of these advances in science and not be held back for fear that getting a genetic test will drive up the cost of life insurance. This ban will restore certainty. It tells Australians, especially those at higher risk of heritable conditions, that their decision to undertake genetic testing won't jeopardise their access to life insurance or force them into more expensive or restricting policies. Better uptake of genetic testing also improves medical research, and that means better prevention, earlier treatment, stronger public health outcomes and advances in scientific knowledge. Right now, people are being deterred from taking part in genetic tests as part of scientific research for fear that, if those results are revealed to them, they will then be obligated to reveal them to potential life insurers and therefore pay more.

Under this bill, individuals will still be able to volunteer their test results with written consent where it benefits them, and insurers can still use symptoms, diagnoses and family history to ensure policies remain properly risk rated. The value of being able to volunteer test results was highlighted, in Dr Tiller's A-GLIMMER Final stakeholder report, by the case of Frank, whose father had Huntington's disease and who had a 200 per cent premium loading applied to his policy due to his family history. But he had a genetic test result showing that he did not inherit the Huntington's disease variant and so was not at risk of Huntington's disease. He had to take the insurance company to the complaints tribunal in order to finally reach a settlement. Under the bill that is before the House, it will be possible for people like Frank—a pseudonym, of course—to take forward the sorts of genetic tests that benefit them.

We are acting on behalf of vulnerable Australians. The most affluent can get away without buying life insurance, but vulnerable Australians often feel a need to purchase life insurance in order to forestall the risk that their family are left adversely affected by the economic consequences of their death. This bill will ensure a greater sense of equity and protect some of the most vulnerable in our community. It will be good for medical research, and that is why it enjoys the backing of so many medical research companies. It will be good for health, which is why it enjoys the backing of so many medical advocacy bodies, such as the Australian Medical Association and the Royal Australian College of General Practitioners. It will bring peace of mind to Australians who want to go and find out more about their genetic history, either through curious inquiry or because they are keen to see what genetic testing reveals about them and how they can help their own health and that of their families. I commend the bill to the House.

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