Decade-long advocacy culminates in landmark ban on use of genetic testing in life insurance

The Albanese Government is set to eliminate discrimination in life insurance underwriting based on adverse predictive genetic test results by implementing a ban on their use. This move ensures that Australians are not deterred from undergoing genetic testing due to fears of impacting their life insurance eligibility.

For over a decade, advocates such as Dr Jane Tiller, ethical, legal, and social adviser at Monash University, and Krystal Barter, health activist, author and founder of Humanise Health, have championed this cause. Their tireless efforts have culminated in a policy shift that will position Australia as a global leader in eliminating barriers to genetic testing.

“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,” said Assistant Treasurer and Minister for Financial Services, Stephen Jones MP. “I have met with countless people affected by this issue and thank them for sharing their stories and helping to drive this important change.”

The ban, informed by extensive stakeholder consultation and over 1,000 submissions, received overwhelming support, with 97% backing a total prohibition. To ensure the policy’s efficacy and adaptability, it will be reviewed every five years.

Australian Medical Association (AMA) President, Professor Steve Robson, hailed the decision as a monumental advance in healthcare.

“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. Seeing this situation fixed is an enormous step forward for health care in this country.

“A situation where there’s been a huge financial penalty for having potentially life‑saving medical testing has now been corrected. That’s fantastic news for Australians and for their health system,” he said.

Dr Tiller expressed her enthusiasm for the policy change, saying “This is outstanding news for patients and the Australian public, and will safeguard future of genomic medicine, precision health and medical research.

“This policy reform not only secures the future of genomic medicine but also allows Australians to make informed health decisions without the shadow of financial discrimination.”

Barter added, “To be a part of this, alongside people I admire, and love will go down as one of the most iconic moments of my life. Fighting for this started as a promise to my family and ended with a new genomic healthcare future for everyone.”

Medicines Australia CEO Liz de Somer echoed these sentiments, saying “We are pleased to see the end of legislation that perpetuates discrimination, erodes public trust, impedes progress in genomic medicine and research, and reduces access to potentially life-saving diagnosis and treatments.”

Christine Cupitt, CEO of the Council of Australian Life Insurers, welcomed the development, saying “Australia’s life insurers put in place an industry standard back in 2019 to control how they use genetic tests. Five years on, genetic testing is becoming more common in our community, cheaper to access and increasingly helping people manage or even avoid hereditary conditions.

“Now is the time for strict government regulation.”

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