Government’s claim of progress in genomics falls flat while it fails to uphold the fundamental rights of Aussies

The government has unveiled Cancer Australia’s National Framework for Genomics in Cancer Control, a strategic plan designed to guide healthcare professionals, researchers, health services, and policymakers in the safe and effective integration of genomics into cancer care. However, criticisms continue over the government’s failure to uphold the fundamental rights of Australians.

Federal Health Minister, Mark Butler MP, stated “Australia is at the precipice of transforming the potential of genomics into concrete improvements in cancer care, research, policies, and service delivery. Through this Framework, we continue our commitment to providing national leadership in the development and use of genomic medicine, and in delivering world-class outcomes for every Australian affected by cancer.”

However, the Breast Cancer Network Australia (BCNA) has voiced strong concerns over a crucial unmet promise: the failure for the government to legislate a full ban on genetic discrimination in life insurance. This reform is essential to ensuring that Australians can access genetic testing without the fear of financial repercussions.

In September 2024, Assistant Treasurer and Minister for Financial Services, Stephen Jones MP, announced a legislative ban on genetic discrimination in life insurance, which would safeguard individuals from being penalized by insurers based on their genetic information. However, despite repeated assurances that the legislation would be introduced within the current parliamentary term, the government has failed to act, leaving thousands of Australians vulnerable.

Dr Jane Tiller, Ethical, Legal & Social Adviser in Public Health Genomics at Monash University, questioned the government’s commitment to its promises.

“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’s Director of Policy, Advocacy & Support Services, Vicki Durston, expressed disappointment with the government’s failure to act.

“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.

According to Christine Cockburn, CEO of Rare Canecrs Australia, genomic-led cancer care “lives in the world of research. It doesn’t live in clinical care equitably and in a way that makes sense.”

Durston emphasised, “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.”

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