Fears of discrimination from life insurance companies are deterring people from having genetic testing despite potential benefits to their health, a study has found.

Australian researchers also found that people eligible for genetic testing had low awareness of the legality of insurers demanding to see their results or that a moratorium had been put in place to exclude the practice up to a certain limit.

They surveyed 367 people (68% female) previously offered genetic testing for a range of conditions including hereditary breast and ovarian cancer, cardiovascular disease, Lynch syndrome, mitochondrial disease, and haemochromatosis.

Most respondents undertook the test (89%) and had a positive result (76%).

The researchers said the Disability Discrimination Act had an exemption in place permitting life insurers to use genetic test results in underwriting, including death, disability, trauma and income protection cover, but many of those surveyed (74%) didn’t know this practice was legal and 9% incorrectly believed it was prohibited.

Only 4% agreed with the system.

Almost one-third of respondents received a test after the life insurance industry introduced a partial, self-regulated moratorium in 2019 restricting use of genetic test results for policies up to certain limits, including $500,000 for death cover.

However the majority (84%) surveyed didn’t even know the moratorium existed.

Writing in the European Journal of Human Genetics [link here], the researchers said ongoing difficulties accessing life insurance products was particularly concerning.

One third of those who said they may have tried to apply for life insurance products reported difficulties, including insurers rejecting applications; financial advisers telling respondents that their applications would be rejected; and insurers placing conditions on insurance policies or charging higher premiums.

Some respondents reported discrimination even after taking preventive measures.

This included a 43-year-old woman with a BRCA2 variant and family but no personal history of cancer, who, despite having her ovaries and fallopian tubes removed, and regular intensive breast imaging including mammogram, MRI and ultrasound, was denied death cover outright with no explanation from the insurer.

Another respondent said: “If I’m aware of my genetic condition and keep up with my screening, I don’t think I should be discriminated against.

“I should be rewarded for being proactive”.

Almost half of respondents who answered the question on applying for, or making enquiries about, life insurance products, reported they never had, with more than a quarter of those suggesting discrimination concerns had influenced their decision.

Most (88%) respondents supported the idea of introducing legislation to regulate the industry and two-thirds believed people undertaking genetic testing should be able to apply for unlimited cover without having to hand over results to insurers.

One respondent described the current moratorium as a “tokenistic offering” by insurance companies, adding that, “the vast majority of people applying for these insurances will have mortgages above that value. It does not cover basic needs”.

The authors concluded that the current system was not sufficiently reassuring or protecting Australians, and “only enforceable regulation by government” could meaningfully impact insurers’ use of genetic information.

“Our findings… show that some people at risk of having genetic predisposition to medically-actionable conditions continue to choose not to have genetic testing because of insurance discrimination fears, despite the introduction of the Financial Services Council moratorium,” wrote the authors, led by the Public Health Genomics team at Monash University, Melbourne.

“This finding is consistent with reports from health professionals who discuss clinically-indicated genetic testing with at-risk individuals, who have reported that people continue to delay and decline testing because of insurance fears.

“Enabling at-risk individuals to have genetic testing without fear of discrimination will increase risk prevention and ultimately decrease the likelihood of insurance claims. This means anti-discrimination regulation is also in the interests of insurers, despite their frequent opposition, and should be supported.”

They said research should also gather views of the Australian public more broadly.