Genetic tests wane as life insurers play judge

Yasmine Raso

Senior Journalist, Financial Newswire

3 July 2023

Conducted by a consortium of universities and clinical and consumer organisations, the A-GLIMMER (Australian Genetics & Life Insurance Moratorium: Monitoring the Effectiveness and Response) Final Stakeholder Report found despite the Financial Services Council’s (FSC’s) Moratorium genetic discrimination within the life insurance industry was legally permitted in Australia and discourages individuals from completing genetic testing.

Introduced in 2019 after a 2018 Federal Government Joint Parliamentary Committee Inquiry report recommended a ban on genetic discrimination in life insurance underwriting, the FSC Moratorium is industry self-regulated, has no government oversight and still requires applicants to reveal genetic test results for policies above specific financial limits.

“Our research shows, overwhelmingly, that Australian stakeholders believe current protections against genetic discrimination are inadequate, and that legislation is required,” Monash University School of Public Health and Preventive Medicine Public Health Genomics Ethical, Legal & Social Adviser, Dr Jane Tiller, said.

“We are calling on the government to legislate to protect consumers from genetic discrimination and remove the barrier to genetic testing and genomic medicine.”

A-GLIMMER completed research with consumers, health professionals, researchers and the financial services industry, showing that genetic testing enabled diagnosis, prevention and early treatment of disease which in turn can enhance public health and medicinal advancements.

The report also found there were several instances of non-compliance where life insurers asked applicants about genetic testing and violating the standards included in the FSC Moratorium. Over 90 per cent of health professionals, 88 per cent of patients who had undergone genetic testing, 78 per cent of the general population and 86 per cent of researchers said legislation should have come into effect to regulate the use of genetic test results in life insurance underwriting, as “there is a lack of effective mechanisms to enforce the moratorium or seek redress”.

“Insurance fears can also act as a barrier, by deterring people from having potentially life-saving genetic testing that could match them to tailored interventions and treatments, as well as from participation in genetic research,” the report said.

The report also delivered recommendations for the Australian Government, including making amendments to the Disability Discrimination Act 1992 (Cth) to “prohibit insurers from using genetic or genomic test results to discriminate between applicants for risk-rated insurance, and consider amendments to the regulation of financial services to ensure insurers are subject to a positive duty to not discriminate” and to empower the “Australian Human Rights Commission to enforce, promote, educate and support individuals and all relevant stakeholders to understand and meet the Act’s new legal obligations”.

“The report highlights that Australia is lagging behind other countries in dealing with genetic discrimination. The findings of the report clearly show that self-regulation in insurance is not working, and legislative action is urgently needed,” Hayley Jones, Director of the McCabe Centre for Law and Cancer, said.

“The recommendations in this report would help Australians access genetic testing, and participate in important genetic research that can lead to new cancer treatments, without fear of discrimination.”

“The issue of genetic discrimination has stifled clinical and research genomic uptake for years,” Tiffany Boughtwood, Managing Director of Australian Genomics, said.

“The report makes a clear case for urgent intervention by the Australian Government, to protect consumers and the future of genomic medicine and research, as we’re on the brink of realising population-scale genomic testing in Australia.”