Groundbreaking legislation transforms life insurance access for Australians at risk of breast cancer

Breast Cancer Network Australia (BCNA) proudly celebrates the Australian Government's groundbreaking decision and Assistant Treasurer Stephen Jones will announce a total ban on genetic discrimination in life insurance. This historic moment is the culmination of an eight-year advocacy campaign led by Dr. Jane Tiller from Monash University and consumer advocate Krystal Barter.

Together, they spearheaded a national movement to end genetic discrimination, supported by BCNA and many other consumer organisations.

The new legislation enforces a total ban on the use of genetic results in life insurance underwriting, with no financial limits, caps, or exclusions. This comprehensive ban will not only protect those with genetic predispositions but also help shape the evolution of personalised medicine, ensuring that people are not deterred from taking genetic tests. Previously, many individuals at risk of developing breast cancer were foregoing genetic testing due to concerns about how their results might impact their access to life insurance.

This legislation follows international precedents, including Canada, which implemented a similar ban in 2017.

Dr. Tiller and Krystal, both deeply committed to this cause, have worked tirelessly to drive change. Krystal, living with a BRCA1 mutation, has advocated for those at risk of breast cancer, while Dr. Tiller provided the crucial research and expertise needed to shape the legislative framework.

This law ensures that individuals with genetic mutations, like BRCA1 carriers – who face a 55-65% chance of developing breast cancer, and BRCA2 carriers – who face a 45% chance – are no longer penalised. By removing these barriers, the legislation encourages more people to undergo genetic testing, improving early detection and health outcomes. This victory marks a significant step forward for BCNA’s policy and advocacy priorities around managing risk and demonstrates the power of consumer advocacy in driving policy reform.

Krystal Barter, Health Care Consumer Advocate – BRCA 1 variant carrier, said: "My family was one of the first in Australia to be tested for the BRCA gene mutation 25 years ago, and this  moment means everything to me. I promised my family, and especially my children, that I would change this—and now I get to tell them we made history. This isn’t just about my family; it’s about protecting future generations. It ensures that those at risk can make informed decisions about their health without the fear of being punished for it.

"This victory is a legacy, not just for my kids, but for every family facing the uncertainty of genetic risk." 

Vicki Durston, Director of Policy Advocacy & Support Services at BCNA, said: "This legislation represents a significant advancement for individuals at increased risk of breast cancer. It removes the barriers that have prevented many from accessing life-saving genetic testing.

"For those with BRCA mutations, this is particularly important, as they face a heightened risk of developing more aggressive and harder-to-treat forms of breast cancer. BCNA has always prioritised consumer-led advocacy, ensuring that the voices of those affected guide the changes that matter most.

"We are incredibly proud to have supported this work. This reform underscores the critical role consumer advocacy plays in shaping impactful policy, and today’s announcement is a significant step forward for all Australians facing genetic risk."

Kara Ryan, 30, who carries the BRCA2 variant, shared her experience at Parliament House: "I had to make the choice of my health or protecting my life financially, and I chose my health and proceeded with the test.

"Finding out I carry this variant has changed my life forever. It has given me the power to put plans in place before an illness takes hold. With today's announcement, I don't have to worry anymore, and neither does any other Australian who wants to have genetic testing but was afraid to do so because they might be discriminated against."

Media contact 
Media and Communications Team
03 9805 2540
media@bcna.org.au