Louise Miller-Frost (Boothby, Australian Labor Party) Share this | Hansard source

I thank the member for Macarthur for moving this important motion. Genetic research is critical in improving the screening, early diagnosis and treatment of Australian patients. Genetics and genomics are reshaping clinical practice and changing the way we prevent, diagnose, treat and monitor a range of heritable conditions, cancer predisposition syndromes and rare cancers. But we know that some people are wary of undergoing genetic testing—they're either postponing or even avoiding it altogether—because of a perceived risk to privacy and the risks to accessing financial products such as life insurance.

Genetic testing and its legal implications cover three ministerial portfolios—obviously health, but also the Attorney-General in terms of privacy and Treasury in terms of the impact on the life insurance industry. The Albanese government is committed to the future of genetic research and testing for Australians. This is a health system and scientific frontier focusing on prevention and early intervention, and this is important for the health of Australians. On 18 November 2023, we announced $66 million for genomics research. A total of 25 projects will be funded by the government to conduct genomic research to assist in improving testing and diagnosis for many diseases. Each of these 25 projects will receive up to $3 million through the Medical Research Future Fund's Genomics Health Futures Mission. On 1 November, the Minister for Health and Aged Care announced new listings on the MBS for a range of genetic tests, valued at $148.5 million over the next four years.

Additionally, the government is consulting with states and territories on the development of a nationally cohesive approach to medical genomics, including the establishment of a new national genomics body. The government's consideration of this body will also be informed by an expert advisory group and an Aboriginal and Torres Strait Islander advisory group on health genomics. The Department of Health and Aged Care is monitoring developments in the fields of genetics, genetic testing and participation in medical research, and will continue to support the Treasury and Attorney-General's Department by providing advice on these matters.

Beyond the health portfolio, on 28 September 2023 the Australian government released its response to the Privacy Act review report. In its response to the review, the government committed to progressing work to enhance privacy provisions provided to individuals and to ensure Australian businesses have clarity about what information is covered by the Privacy Act and how best to protect this information. The government's response to the Privacy Act review is being led by the Attorney-General's Department. The Assistant Treasurer and Minister for Financial Services, the Hon. Stephen Jones MP, is responsible for the regulation of life insurance and is taking the lead on genetic discrimination in life insurance, including external consultation and examination of possible options.

In response to a parliamentary committee report in 2018, the Financial Services Council put a genetics moratorium in place to address disincentives to undertaking a genetic test. This is effectively industry self-regulation for products over a certain value. Monash University's A-GLIMMER report by Dr Jane Tiller measured the impact of the moratorium and was published in June 2023. It called for an amendment to the Disability Discrimination Act to prohibit the use of genetic or genomic test results to discriminate between applicants for risk rated insurance.

Assistant Minister Jones has today announced the release of a consultation paper on the use of genetic test results in life insurance underwriting. The consultation paper includes three options: no government intervention; legislating a complete or partial ban—and this would align with the report's recommendation—or legislating financial limits on the use of genetic tests.

No-one should be dissuaded from potentially life-saving testing out of fear of discrimination in life insurance products. Australia lags globally on this issue, with some form of prohibition or ban in place in the UK, Canada, Europe, the US and New Zealand. The consultation will close on 31 January 2024, and I encourage those interested in this important issue to put in a submission to the consultation. Thanks again to Dr Jane Tiller, the author of the Monash report, for her ongoing advocacy in this area.

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