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News & Trends - MedTech & Diagnostics

Clinicians and academics call for legislation to protect Australians from genetic discrimination

Health Industry Hub | June 30, 2023 |

MedTech & Diagnostics News: In a landmark report funded by the Australian government, leading experts from Monash University and several other prestigious institutions have emphasised the urgent need for laws to safeguard Australians against life insurance discrimination based on genetic tests. The report, known as A-GLIMMER (Australian Genetics & Life Insurance Moratorium: Monitoring the Effectiveness and Response), also concluded that the insurance industry’s self-imposed moratorium aimed at preventing such discrimination falls woefully short of the mark.

The study, conducted in collaboration with the Universities of Melbourne, Sydney, Queensland, Tasmania, Deakin University, and various clinical and consumer partners, revealed that genetic discrimination in life insurance is prevalent in Australia. Shockingly, this discrimination not only hinders individuals from undergoing genetic testing but also discourages their participation in vital research initiatives.

Astoundingly high percentages of stakeholders supported the implementation of legislation to regulate the use of genetic test results in life insurance underwriting. Over 90% of health professionals, 88% of patients with experience of genetic testing, 78% of the general public, and 86% of researchers believe that legal protections are necessary.

This report follows the 2018 Federal Government Joint Parliamentary Committee Inquiry report, which had recommended a ban on genetic discrimination in life insurance underwriting. In response, the Financial Services Council (FSC), the peak body representing the life insurance industry, introduced a partial moratorium in 2019. However, the FSC’s self-regulated initiative only requires applicants to disclose genetic test results for policies above certain financial thresholds and lacks government oversight.

To address the shortcomings of the moratorium, the Australian government provided funding through the Medical Research Future Fund’s (MRFF) Genomics Health Futures Mission to establish the A-GLIMMER coalition. Comprised of independent experts, this coalition conducted a thorough investigation into the adequacy of the moratorium between 2020 and 2023.

Dr Jane Tiller, Public Health Genomics Ethical, Legal & Social Adviser at Monash University’s School of Public Health and Preventive Medicine, led the research project and provided evidence at the Parliamentary Inquiry. Dr Tiller asserted that the findings of the study were unequivocal, emphasising the overwhelming consensus among Australian stakeholders that current protections against genetic discrimination are grossly insufficient. She called upon the government to take legislative action to safeguard consumers from genetic discrimination and eliminate barriers to genetic testing and genomic medicine.

The A-GLIMMER research encompassed consultations with consumers, health professionals, researchers, and the financial industry. The study highlighted the immense potential of genetics in advancing medicine and public health, enabling the diagnosis, prevention, and early treatment of diseases. However, the current legal permissibility of Australia’s life insurance industry to utilise genetic test results for underwriting purposes perpetuates discrimination.

The report emphasised that the fear of insurance discrimination acts as a significant deterrent, discouraging individuals from undergoing potentially life-saving genetic testing and impeding their participation in genetic research. Hayley Jones, Director of the McCabe Centre for Law and Cancer, enthusiastically welcomed the report’s recommendations, stating that Australia lags behind other nations in addressing genetic discrimination. Jones highlighted the failure of self-regulation in the insurance sector and stressed the urgent need for legislative measures.

Tiffany Boughtwood, Managing Director of Australian Genomics, echoed the sentiments expressed in the report, asserting that the recommended changes are long overdue. Boughtwood emphasised that genetic discrimination has impeded the adoption of clinical and research genomic initiatives for years. With the advent of population-scale genomic testing in Australia, Boughtwood underscored the necessity of swift government intervention to protect consumers and ensure the future of genomic medicine and research.

The A-GLIMMER report serves as a wake up call to the Australian government and insurance industry, urging them to take immediate action to rectify the pervasive issue of genetic discrimination in life insurance. The report’s compelling findings, backed by extensive research and overwhelming support from stakeholders, make a clear case for the implementation of robust legislation to protect individuals from being unfairly treated based on their genetic information.

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