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Life insurers and those offering income protection and permanent disability insurance will be banned from using genetic testing to refuse cover, or hike up charges, for a range of insurance products.
The federal government announced on Tuesday it would ban the practice that saw consumers discriminated against if they disclosed the results of genetic tests that predict their likelihood of an inherited disease.
It comes after consultation to address genetic discrimination in life insurance earlier this year. More than 1,000 submissions were received with 97 per cent supporting a total ban.
"This change will give Australians the confidence to undertake genetic testing without fear it will impact their ability to access financial security through life insurance," Minister for Financial Services, Stephen Jones said.
Australians are increasingly accessing genetic testing to identify their risk of genetic conditions, such as a BRCA breast cancer gene, but there were growing reports of resistance due to how it might affect life insurance eligibility.
The announcement covers all risk-rated insurance including life insurance, income protection and total and permanent disability insurance.
Cover denied for genetic reasons
The announcements has been welcomed by customers like Karen Butler who has Marfan syndrome — a genetic condition that affects connective tissue which hold organs and other structures of the body in place.
The condition is normally diagnosed via a genetic test but Ms Butler was diagnosed as a child.
Her condition was caused by a spontaneous mutation of a gene and not inherited from her family.
Karen Butler was denied income protection insurance because of a genetic condition called Marfan syndrome (ABC News: Supplied)
Five years ago Ms Butler needed major heart surgery to repair her aorta.
She said when she applied for income protection insurance she was refused because of her condition.
"As soon as you mention cardiac they won't insure you," she said.
When she asked to be insured for conditions other than Marfan syndrome, she was still refused insurance.
"I tried multiple insurers. I had a broker. I tried through my super," she said.
"It's absolutely, 'No, we're not going to cover you'."
Genetic testing will be banned from insurance risk calculations. (Westend61)
Ms Butler said it was a constant worry about how she would handle things if she became unwell for another insurable reason, like cancer.
"It's completely discriminatory as the whole point of that particular insurance is to cover you if you are ill and cannot work," she said.
"I always have to have money in the bank. It really worries me because what happens if I don't have any money. It's really unfair."
Australia catching up to global standards
Public health and genomics researcher Dr Jane Tiller has been lobbying for the ban since 2016.
Dr Jane Tiller has been lobbying for laws to ban insurers from using genetic tests to discriminate. (Supplied: Jane Tiller)
"There is a significant concern amongst people around the fact that life insurers can use their genetic results to discriminate against them, so either to deny their cover or increase the cost of their premiums," she said.
"We find that it's a significant deterrent for people who choose either not to have genetic testing that could save their lives, or not to participate in genomic research."
She said countries like Canada had banned the practice since 2017 and the UK for more than two decades.
"Really this puts us forward and much more in line with those other countries.
"There are multiple stories of people who have gone and taken this testing who've then been told by their insurers they won't be covered for any type of cancer, that their premiums will be doubled."
Range of products covered
In Australia consumers are treated equally for private health insurance but it's other insurance products that have been a concern.
"This reform isn't going to completely change life insurance," Dr Tiller said.
"It will still be risk-rated, and so people will still have to disclose their family history. They will still have to disclose if they have a personal diagnosis of disease.
"But the really important thing about this protection is that it will protect people's decision to have a genetic test — we can't protect people against all forms of risk rating, but we can protect their decision to have a genetic test."
Australian Medical Association president Steven Robson said it was an enormous step forward for health in Australia.
"We know that the fear of being denied insurance coverage has been a huge disincentive for Australians to have genetic testing when they need it," he said.
"There's been a huge financial penalty for having potentially life-saving medical testing."
There's been an increase in the number of people using genetic testing. (keepingtime_ca/flickr.com/CC BY-SA 2.0)
Council of Australian Life Insurers chief executive Christine Cupitt said the industry also backed the change and had put in place an industry standard in 2019 to control how genetic tests are used.
"Australia's life insurers have never wanted to do anything to discourage people from taking genetic tests and accessing the information they need to make informed choices about their health" she said.
They also backed a five-year review of the legislation.
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 could not be collected by the insurer for policies up to $500,000.
However, researchers like Dr Tiller said a partial moratorium only protected up to certain financial limits and were not legally binding.
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