A national ban on life insurers discriminating against applicants based on genetic testing could pave the way for major government investment in preventive genomic screening, according to Monash University genomics expert Dr Jane Tiller.
The Federal Parliament is expected to pass the landmark legislation today, with the new law set to take effect later this year. The reform follows nearly a decade of advocacy by Dr Tiller, who has worked closely with the government and led a three-year research project exploring stakeholder views to inform the 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,” Dr Tiller said.
“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, co-led by Dr Tiller, is developing a national screening program that could make preventive genomic testing available to all adult Australians through the public health system. She is now calling on the government to fund the next stage of the program.
Dr Tiller described the ban on genetic discrimination in life insurance as 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.
Law student and genetic testing advocate Mia Hodder, 22, who carries a BRCA2 variant, said the new law would protect others from the fear of discrimination she once faced.
“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.”
The bill has received strong bipartisan support, with dozens of parliamentarians speaking in favour of the reform. Dr Mike Freelander MP, a paediatrician who has championed the bill, 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’s pilot program has already demonstrated the life-saving potential of preventive genomic testing. It found that around one in 50 young Australians carries a high-risk genetic variant linked to breast and ovarian cancer, Lynch syndrome, or familial hypercholesterolaemia.
Dr Tiller said expanding preventive DNA screening could help identify people at risk of serious genetic conditions and enable early intervention.
“At the moment, publicly funded DNA testing is only available to a limited group of Australians, and strict eligibility criteria exclude those who need it most,” she said. “In fact, around nine in ten 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’s director of policy, Vicki Durston, said the legislation marked a landmark victory after years of advocacy by 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 invest in preventive genomic screening.”
