Genetic tests, assured

The Australian insurance industry’s self-regulated moratorium restricting the use of genetic test results in life insurance underwriting comes up for review in 2022. A new research project has been funded to ensure the review gets adequate, independent evidence.

In a perspective published today in the Medical Journal of Australia, public health genomics experts say the A-GLIMMER project (Australian Genetics and Life Insurance Moratorium: Monitoring the Effectiveness and Response) seeks to answer the question of whether the Financial Services Council’s (FSC) voluntary moratorium is “an adequate and effective long-term regulatory solution for Australia”.

The insurance industry voluntarily introduced the moratorium in July 2019, following Parliamentary Joint Committee recommendations. The moratorium restricts the use of genetic test results in life insurance underwriting for polices worth up to AU$500 000.

“Certainly… some people who had concerns about having genetic testing in the past now have some of those concerns assuaged,” says perspective lead author Jane Tiller, ethical, legal and social adviser in public health genomics at Monash University.

“However, [the moratorium] isn’t regulated by anyone, there’s no oversight by the government. It relies on the insurers putting the right policies in place, doing the right thing and limiting their own access to information that’s interesting to them.”

The biggest impact is hard to measure. Genomic testing is a powerful tool in medical diagnostics and one with the potential to improve disease prevention and public health outcomes. A few years ago Tiller and colleagues surveyed genetic counsellors and clinical geneticists to gauge response to the moratorium.

“Overall, there were all sorts of concerns from health professionals around the fact that people didn’t want to have testing,” she says. “It was something that really got in the way of people just being able to make a decision on the basis of their health, rather than having to think about the financial and insurance implications.”

Several national governments have banned or restricted the use of genetic test results in risk-rated insurance, including the United Kingdom and other European countries. Canada enacted legislation in 2017 that outlawed genomic discrimination completely.

“And it’s not just for insurance,” Tiller says. “It’s across all goods and services and there are no exceptions.”

Tiller co-authored a 2019 article published in Genetics in Medicine that demonstrated through modelling that it’s cost-effective to run population-wide genetic screening for certain cancer-causing genetic variants.

“As soon as we talk about projects like that, we come up against [the genomic discrimination] issue all the time” she says. “People won’t have faith in public systems of offering genetic testing if they know that their genetic information may be used by insurers. It comes up at every stage of every genomic project or in relation to anti-discrimination. And if it was solved, we wouldn’t have to worry.”

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