People who undergo genetic testing face having their life insurance applications refused. (Supplied: ACT Health)
When Peter Garvey tried to upgrade his life insurance policy for peace of mind after having three children, he was denied cover for cancer because he had disclosed a positive test for a genetic mutation.
He was in his late 20s when he discovered he had lynch syndrome, which carries an increased risk of bowel and other cancers.
“In my family, my mother and her sisters, so some of my aunties, got cancer and they discovered that they had this particular gene,” he told 7.30.
“I applied for the insurance and then, unfortunately, it came back again saying they’re not going to be able to cover me for cancer,” he said.
Genetic researchers say companies who refuse to insure people with genetic disorders are putting lives at risk and threatening important medical research.
“We know there are many people who we never see because they’re worried about insurance and so never come forward to genetic testing,” Professor Martin Delatycki, director of clinical genetics at Victorian Genetic Services told 7.30.
“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.”
In Australia, life insurers are allowed to ask if an applicant has had, or is considering having, genetic testing and can then use the results 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,” said Dr Paul Lacaze, head of Monash University Public Health Genomics.
It’s a practice that’s been temporarily banned in other countries, including the United Kingdom and Canada, because of concerns it discourages people from undertaking genetic testing and can impede research.
Insurance companies ‘discouraging genetic testing’
Peter Garvey decided to upgrade his life insurance after having children. (ABC News: Elise Worthington)
Mr Garvey underwent regular medical surveillance including colonoscopies, skin checks and ultrasounds which reduced his cancer risk dramatically.
“I got in contact with various doctors that had written papers on that particular gene and how it affects your chance of getting cancer,” he said.
“I worked out that with that surveillance my risk of getting cancer was very much reduced, reduced to the point where I was basically at population risk.”
He spent months compiling the statistics but when he presented his research to the insurer he was knocked back again.
“I requested the actuarial basis of their decision and they never gave it to me and I requested it repeatedly,” he said.
Mr Garvey took the unusual step of complaining to the Human Rights Commission.
“I said, ‘I have pure evidence here of discrimination because I have population risk and I’m still not being covered for cancer’,” he said.
A month later, the insurer finally agreed to give Peter Garvey cancer cover.
“What they were doing was quite bad because it was discouraging genetic testing and discouraging all the benefits of genetic testing, which are better health outcomes for the community,” he said.
‘I’m being more proactive about it’
Sarah Dillon was knocked back for life insurance twice because she carried the BRCA1 genetic mutation. (ABC News)
Sarah Dillon hired a financial adviser to help her secure life insurance after discovering she carried a BRCA1 genetic mutation which increases her risk of breast and ovarian cancer.
After being knocked back by two insurers, she brought forward major surgery to remove her breasts and ovaries in the hope of getting insurance.
“We filled out the third application and sent that off and I got, not a flat-out rejection, but that once I had my preventative surgery done they would reconsider my application,” she told 7.30.
She finally got insurance after months of stressful negotiation.
“I don’t think it’s right that you cannot get life insurance based on a likelihood that you may may get a condition in the future,” she said.
“Everyone has something, right? The only difference about me is that I know it.
“Why wouldn’t that make me a better candidate, because I’m being more proactive about it.”
‘The issue is too complex and fraught with difficulties’
Nick Kirwan says insurers need the same information about the risk as the person insured. (ABC News)
In Australia, the insurance industry is self-regulated by the Financial Services Council (FSC), which argues companies need access to genetic data to make informed decisions.
“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,” FSC life insurance policy manager Nick Kirwan said.
“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.”
In a policy paper published last month, Dr Lacaze and his colleagues argue the life insurance industry shouldn’t be allowed to self-regulate and greater government oversight is needed.
“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 told 7.30.
“The issue is just too complex and fraught with difficulties.”
The Federal Government is currently holding a parliamentary inquiry into the life insurance industry, which is due to report back next month.
Dr Lacaze said the issue was hanging over the Australian genomics community.
“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.