Rebekha Sharkie (Mayo, Centre Alliance) Share this | Hansard source

) ( ): I want to thank the member for Macarthur for the opportunity to acknowledge that genetic testing is an absolute game changer. It can enable early diagnosis, prevention and treatment of disease. From my family's experience, I know that while we all expect that new baby to arrive safely and healthy, sometimes life doesn't follow those plans, and not all families have access to genetic testing before their baby arrives. That's what my family found out. It can take months or, in many cases, years following the birth to obtain a diagnosis for a genetic disorder, particularly if it's incredibly rare. Even when genetic disorders are life-limiting or have a degenerative effect, the earlier you can have an assessment—we're learning every day how important it is to have early intervention and treatment. This can make access to genetic testing, antenatal and postnatal, even more vital.

It also draws attention to the increasingly vital role of genetic counsellors in our healthcare workforce. I would like to recognise the genetic counsellors who came into Parliament House, I think it was in the last sitting week--sometimes, at this time of year, the sitting weeks blur. They do so much to support families and individuals dealing with genetic disorders. They help patients understand the risks and benefits of genetic testing and help patients understand what a positive or negative test can mean for them and their families.

My final point relates to privacy and the crossroads that Australia is at with respect to the sharing of genetic testing information. As has been pointed out by the member for Macarthur, some Australians feel discouraged by undertaking genetic testing because of potentially adverse implications for life insurance and even employment prospects. I've heard from some people with genetic conditions that their children or other family members are actually deciding to postpone or avoid genetic testing altogether, which is really concerning—notwithstanding the health benefits that testing could bring—until after because of those potential life insurance impacts. This shows how worried people are about the implications of disclosing genetic test results for their careers, for their livelihoods and for insurance.

We need to enable people to put their health first and only think about the health implications and not the possible financial implications. We need people to embrace genetic testing, which could be life-changing or even life-saving, without being made to disclose the results to potential employers or insurers. In the United Kingdom, there is a moratorium banning the use of genetic testing and underwriting life insurance. However, presently in Australia, the life insurance sector can use genetic test results in underwriting. In 2019, Australia's peak life insurance body implemented only a partial moratorium requiring disclosure of genetic test results above set limits of $500,000 for death or permanent disability and lower limits in other areas. This is not subject to government oversight.

I'm pleased that the government has released a consultation paper today launching a review of Australia's regulatory framework for the use of genetic testing in life insurance underwriting. A ban would be in line with the recommendations of the 2023 Australian genetics and life insurance moratorium: monitoring the effectiveness and response A-GLIMMER report. I've had the benefit of meeting with Dr Jane Tiller, one of the authors of this report, and Australians impacted by our nation's current lack of a ban on the use of genetic testing and life insurance underwriting. The report shows the lack of certainty for those impacted. I think we are seeing an effect with respect to health implications and people's access to health and medical support without having that safety net. I therefore encourage those with lived experience to participate in this government consultation, which is closing next year on 31 January.

I'm glad to hear that the Council of Australian Life Insurers, whose 19 members represent 99 per cent of the life insurance market and all reinsurers, recognise the important role of genetic testing, and I hope to see their full support for moves to ban the use of genetic testing in Australia for life insurance underwriting. This will give Australians greater peace of mind with respect to making these vital decisions. I'd like to close by just mentioning the great work of the member for Macarthur. I think it's fair to say that, through the topics that the member brings to the parliament, his expertise in all areas of medicine, health and ethics has made this parliament and debate richer.

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