Researchers say insurers are engaging in genetic discrimination.

Experts have warned that insurance companies are beginning to rule out applicants with genetic disorders, refusing to insure people and putting lives at risk.

They say it could threaten important medical research too.

“We know there are many people who we never see because they're worried about insurance and so never come forward to genetic testing,” says Professor Martin Delatycki, director of clinical genetics at Victorian Genetic Services.

“They're worried that their insurance policies won't cover them if they get sick from their genetic condition, and so some people are choosing not to have testing as a result of that.

“Unquestionably, lives can be lost.”

Australian insurers can ask if an applicant has had, or is considering having, genetic testing.

If they get the results, they can use them to calculate risk and approve or deny coverage.

“So the current regulation is that any clinical test result has to be disclosed to the insurer,” says Dr Paul Lacaze, head of Monash University Public Health Genomics.

The United Kingdom and Canada have placed bans on this practice, as they believe it discourages people from having sometimes life-saving genetic testing, while also impeding research.

Australia’s the insurance industry is self-regulated by the Financial Services Council (FSC).

It argues that companies should be allowed the tools to properly assess risk.

“Insurance is a risk-based business and what insurers try to do is ensure that everybody pays the premium that reflects the risk they bring to the risk pool,” says FSC life insurance policy manager Nick Kirwan.

“It's not just genetic tests, the whole principle of insurance is that the insured person and the insurance company should have the same information about the risk that's being insured.”

Dr Lacaze and his colleagues argue in a recent paper that the life insurance industry should regulated by a government body.

“What we've asked for is a moratorium, so this would be a voluntary or temporary ban the Government and the insurance industry would agree to take genetic information off the table,” Dr Lacaze said.

“The issue is just too complex and fraught with difficulties.”

The Federal Government’s parliamentary inquiry into the life insurance industry is set to report back in coming weeks.

Dr Lacaze said the local genomics community cannot move ahead, and save lives, as freely as it should.

“I kind of see it as a sort of black cloud which, if removed, would allow us to move forward like other countries have with public trust and faith and the ability to make the most out of this new technology and this new information that we're trying to understand, as opposed to have people shy away from engaging in genetics,” he said.