Insurance fears get in the way of genetic testing

3 minute read

Leading Aussie experts have called on the government to legislate against life insurance discrimination based on genetic testing.

A federal government-funded report has called for legislation to stop life insurance companies from using genetic tests to discriminate between applicants, with industry experts saying the current industry regulations fail to protect consumers.

A self-regulated moratorium limiting the use of predictive genetic tests when assessing insurance applications was introduced by the life insurance industry in 2019 through the Financial Services Council. The moratorium only applies to newly issued policies under certain financial limits and is set to expire in June 2024.

Led by a coalition of independent experts from leading universities across Australia, the Australian Genetics & Life Insurance Moratorium Final Stakeholder report investigated how the moratorium had impacted genetic discrimination in the life insurance industry over the last three years.

The authors found that more than 90% of health professionals, 88% of patients who had experienced genetic testing and 86% of researchers believed legislation was needed to regulate how genetic tests are used in life insurance underwriting.

They also found that instances of non-compliance with the moratorium terms, established by the Financial Services Council, continued to occur in multiple life insurance companies, such as companies asking insurance applications about the results of their genetic testing.

“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 authors wrote.

Project lead Dr Jane Tiller told media that the findings strongly demonstrated the need for the government to legislate against life insurance discrimination.

“Our research shows, overwhelmingly, that Australian stakeholders believe current protections against genetic discrimination are inadequate, and that legislation is required,” Dr 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.”

Key recommendations from the report include amending the Disability Discrimination Act to prevent insurers from using genetic test results in the life insurance underwriting process and allocating responsibility and resources to the Australian Human Rights Commission to enforce the legislation.

The authors also recommend amending industry regulation of financial services so that insurers have a financial incentive to avoid discrimination.

Managing Director of Australian Genomics Tiffany Boughtwood told media that the changes recommended in the report were well overdue in Australia.

“The issue of genetic discrimination has stifled clinical and research genomic uptake for years. 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,” she said.

More details on the report’s findings can be found here.

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