A national legislative ban on life insurers discriminating against applicants based on genetic testing would create an opportunity for the Australian government to invest in preventive genomic screening, says a leading genomics expert from Monash University.
The Federal Parliament is today expected to pass the legislative ban, which is set to come into effect later this year.
It is the culmination of a decade of advocacy by Monash legal and genomic expert Dr Jane Tiller, who has worked closely with the government on the reform, including leading a three-year research project that explored stakeholder views to inform the new legislation.
“It is just extraordinary to be here after almost a decade of advocacy, with an actual piece of legislation that will protect everyday Australians”, said Dr Tiller.
“This law will give people the safety to have genetic testing without worrying about the possible implications for their life insurance.
“It paves the way for government investment in preventive genomic screening for adults, through programs like Monash’s DNA Screen, knowing people won’t have to weigh up preventive health against financial fears.”
DNA Screen is working to develop a national screening program that could be available to all adult Australians through the public health system.
Dr Tiller, who co-leads the program, is calling on the government to fund the next stage of this vital work.
She said the ban on genetic discrimination in life insurance was a game changer.
“This is the most significant barrier to genetic testing participation, so there is an unprecedented opportunity to invest in this life-changing health initiative,” she said.
Mia Hodder is a 22-year-old law student with a BRCA2 variant who has become a strong advocate for genetic testing.
“Knowing my risk has changed my life and opened up preventive pathways that have saved my life and that of my family,” she said.
“I have now had a preventive double mastectomy and feel so empowered that I could take control of my health.
“I am beyond thrilled that my genetic information is now protected against discrimination, and that others like me won’t have to worry about insurance when having a genetic test.”
Dozens of Federal parliamentarians spoke in support of the genetic discrimination bill, highlighting the incredible level of political will towards this critical policy change.
In particular, Dr Mike Freelander MP, a paediatrician who has championed the bill from the outset, described it as “one of the most important pieces of legislation to pass through this parliament in the 10 years I've been here”.
DNA Screen has already shown tangible, life-saving benefits for hundreds of Australians.
In a pilot program, it found an estimated one in 50 young Australians carries a high risk genetic variant for breast and ovarian cancer, Lynch syndrome, and familial hypercholesterolaemia, making genomic testing and preventative treatment a top priority.
Dr Tiller said offering preventive DNA screening to far more Australians would help identify people who are at risk of genetic conditions and prevent disease altogether or detect it at early, treatable stages.
“At the moment, publicly funded DNA testing is currently only available to a limited group of Australians and strict eligibility criteria excludes those who need it most,” she said.
“In fact, around 9 in 10 Australians at high genetic risk remain undetected.
“We have the knowledge and infrastructure to scale our impact, so it’s a no-brainer for the government to fund the next stage.”
Breast Cancer Network Australia director of policy, Vicki Durston, said this legislation was a landmark victory after years of advocacy by many consumer organisations.
“Genetic testing for genomic high risk is critical for us to move into an era of preventive medicine,” she said.
“We congratulate the government on taking action to ban genetic discrimination in life insurance, and now join the call for the government to fund the expansion of DNA Screen to prevent breast cancer and other diseases in high risk Australians.”
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