6th February, 2025
Breast Cancer Network Australia (BCNA) calls on the Government to immediately prioritise its promise to introduce a full ban on genetic discrimination in life insurance, ensuring all Australians can access genomic testing without fear.
Today, Cancer Australia launched the National Framework for Genomics in Cancer Control, which aims to integrate genomics into routine cancer care, improving outcomes through personalised medicine. BCNA welcomes the framework but condemns the Australian Government’s failure to follow through on its commitment to legislate a full ban on genetic discrimination in life insurance, a critical reform to ensure all Australians can access genetic testing without fear of financial repercussions.
BCNA contributed to the consultation that informed the National Genomics Framework and remains committed to ensuring genomic testing is accessible, equitable, and safe. However, the lack of legal protections is already creating real-world consequences. There is widespread misinformation, with many Australians wrongly believing that legislation banning genetic discrimination has already been passed. Some individuals have proceeded with genomic testing under this false assumption, potentially putting themselves at financial risk. The Government’s inaction is not just a broken promise—it is actively misleading and endangering people who rely on genomic medicine to make critical health decisions.
In September 2024, the Assistant Treasurer and Minister for Financial Services, the Hon. Stephen Jones MP, announced a full legislative ban on genetic discrimination in life insurance, ensuring Australians could undergo genetic testing without fear of being penalised by insurers. Despite repeated promises that this legislation would be introduced within this parliamentary term, the Government has failed to act, leaving thousands of Australians at risk.
Dr Jane Tiller, Ethical, Legal & Social Adviser, Public Health Genomics at Monash University said today, “Minister Butler has lauded the government’s national leadership in genomic medicine. But the government is nonchalant about keeping its promise to protect Australians against genetic discrimination. The issue is not solved, and is more urgent than ever. Despite repeated promises from the government in 2024 that it would introduce legislation to ban genetic discrimination in life insurance this parliamentary term, they have not done so, and it appears they do not intend to before the election.
BCNA Director of Policy, Advocacy & Support Services Vicki Durston says: “The Government has dropped the ball when it comes to protecting Australians from genetic discrimination. We have been pushing for this for years, and now, after publicly committing to a ban, they’ve gone silent. This failure impacts thousands of Australians at risk of or living with breast cancer, who should not have to choose between their health and their financial security. BCNA will not let this go—we demand action now.
The Government cannot claim progress in genomics while failing to uphold the fundamental rights of those affected by breast cancer and other genetic conditions,” said Durston. “If genomic medicine is the future, then protections against genetic discrimination must be part of that future. No more excuses. There must be action before an election is called or Australians are at unacceptable risk.”
ENDS
Available for interview:
Dr Jane Tiller, Ethical, Legal & Social Adviser, Public Health Genomics at Monash University.
Vicki Durston,BCNA Director of Policy, Advocacy & Support Services
Case studies
Key Facts:
*BCNA calls out Federal Govt failed promise to ban genetic discrimination by life insurance companies
* Without the amendment to legislation the new Cancer Aust Genomic Framework leaves Australians at risk of discrimination
* Failure to lodge draft amendment before the election is called will result in an acceptable delay in protection from insurer discrimination.
* Interviews available, including case studies
About us:
Breast Cancer Network Australia (BCNA) is Australia’s leading breast cancer consumer organisation. BCNA provides information and support to those diagnosed and their supporters, opportunities to connect with others going through a similar situation and work to influence a stronger healthcare system to ensure all Australians affected by breast cancer receive the very best care, treatment and support.
Contact details:
Kellie Curtain
M: 0412339690
kcurtain@bcna.org.au
