Add Category
Julian Hill was floored by the reaction of his specialist when he asked to be tested for a potentially life-threatening genetic condition.
The federal Labor MP's daughter had been diagnosed with a genetic mutation that could increase the risk of blood clots, and he wanted to see if he also carried it.
His doctor's advice?
"He said, 'Do not get tested for this,'" Mr Hill said.
"And I said, 'well, why not?'. He said, 'well, primarily, because it'll hurt your insurance. So I'd suggest don't do it.'
"The risk was that it might hurt my insurance prospects in the future — and that opened my eyes in a small and personal way to some of the risks of genetic testing."
Mr Hill's daughter, Elanor Devitt, was healthy, fit and only 20 when a potentially deadly blood clot formed in her leg while she was travelling overseas.
"I started having some pain in my leg … but it would become so unbearable I couldn't even walk. I was holding onto a wall to walk," she said.
Ms Devitt was hospitalised in Sri Lanka for treatment and when she returned to Australia it was confirmed she had factor V Leiden, a genetic condition that can increase the risk of blood clots.
That risk was heightened further by the long-haul flight and a contraceptive pill she was prescribed, contributing to the blood clot.
"I have this condition for life. I didn't ask to have it. It's something I have to live with now," she said.
'Time to bite the bullet'
Mr Hill is now calling on his colleague Stephen Jones, the minister for financial services, to urgently implement a total ban on the use of genetic testing in life insurance underwriting.
The government is considering its response to consultation on the issue, which ended in January and received more than 1,000 submissions.
A Senate inquiry report into cancer diagnosis and treatment released last week also recommended the government urgently legislate a "complete ban on genetic discrimination in life insurance".
"Successive governments have rightly been promoting genetic health and genetic testing and investing in medical research, and it can empower Australians to understand their own genetic risks," Mr Hill said.
"But while we are promoting genetic health, on the other hand, the explicit exemption that currently exists in Australian law allows life insurers to genetically discriminate against people.
"It's time we bite the bullet and … legislate to ban discrimination based on genetic heritage and genetic testing."
Dr Jane Tiller from Monash University led a Commonwealth-funded research project into patient experiences of genetic discrimination.
It found consumers were putting off genetic testing because they were worried they would be denied insurance.
"Every time someone considers whether they want to have a genetic test or wants to be part of genetic research, we have to tell them that life insurance implications might be part of signing up for that," Dr Tiller said.
"We found that the majority of people across all of those stakeholder groups believed that legislation was required on this issue."
Industry supports 'near-total' ban
The Financial Services Council (FSC), which previously oversaw the life insurance industry, introduced a self-regulated moratorium in 2019 to prevent genetic discrimination.
Under the guidelines, genetic testing results can not be collected by the insurer for policies up to $500,000.
Dr Tiller said a partial moratorium only protects up to certain financial limits and is not legally binding.
"People who were trying to apply for cover that was over those limits could be discriminated against. The other issue was this is … not enforceable at law. It doesn't change the underlying right legally of insurers to have this information."
Dr Tiller wants the Disability Discrimination Act to be amended to make it unlawful for life insurers to use genetic test results to discriminate between applicants for risk-rated insurance.
The industry is now represented by the Council of Australian Life Insurers, which supports a "near-total ban" on the use of genetic test results in insurance underwriting.
CEO Christine Cupitt said Australia's life insurers "have never, and would never" require someone to take a genetic test.
"It has never been the intention of the life insurance industry to deter people from taking genetic tests that give them more information about their overall health," she said in a statement.
"We support strict regulation on the use of genetic test results in underwriting with limited government-approved exclusions to guarantee fairness for all insured Australians."
Ms Cupitt said the majority of the 15 million people with life insurance in Australia obtain cover without having to disclose genetic test results because they have life insurance through their superannuation, which does not involve an underwriting process.
'People should feel free'
But Dr Tiller said anything other than a total ban could create loopholes for the insurance industry and lead to uncertainty for policyholders.
A full legislative ban would bring Australia into line with Canada, which made the switch in 2017.
Julian Hill said the government wants all Australians to take control of their health.
"If you have the opportunity to do the testing, people should feel free to do that without them thinking 'it's going to … 'deny me life insurance' or 'cost me forever,'" he said.
"I don't want to have to regret understanding your own heritage and health and try to do things to live a longer, happier, healthier life."
Ms Devitt wants to ensure Australians can get insurance cover regardless of genetic test results too.
She now struggles to get travel insurance when she goes overseas and is worried about the implications for life insurance.
"If you can't get life insurance … as a result of something that is due to a genetic makeup … it can become costly and really dangerous," she said.
Loading...