People should be able to access genomic testing without fear of being penalised when they try to obtain life insurance.

However, the Government has failed to follow through on its commitment to introduce a full ban on genetic discrimination in life insurance, says Breast Cancer Network Australia (BCNA).

In September 2024, the Assistant Treasurer and Minister for Financial Services Stephen Jones announced a full legislative ban on genetic discrimination in life insurance, ensuring Australians could undergo genetic testing without fear of being penalised by insurers.

BCNA Director of Policy, Advocacy and Support Services Vicki Durston said: “Despite clear bipartisan support and a commitment to deliver in this parliamentary term, progress has stalled, and the promise to introduce the legislation has not been fulfilled.

“With the election approaching, there is a significant risk that this legislation will be delayed even further. The commitment to act in this parliamentary term has not been met, and BCNA is deeply concerned about the implications of continued inaction. We are calling on the government to urgently introduce the legislation before Parliament rises, ensuring that Australians affected by genetic discrimination are no longer left waiting,” Ms Durston said.

“The Government cannot claim progress in genomics while failing to uphold the fundamental rights of those affected by breast cancer and other genetic conditions.

“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,” she said.

Launch of national framework

BCNA welcomed the January 2025 launch of the National Framework for Genomics in Cancer Control, which integrates genomic testing into cancer care, improving outcomes through personalised medicine.

BCNA said it contributed to the consultation that informed the National Genomics Framework and remained committed to ensuring genomic testing was accessible, equitable, and safe.

However, the lack of legal protection was already creating real-world consequences. “There is widespread misinformation, with many Australians wrongly believing that legislation banning genetic discrimination has already been passed,” Ms Durston said.

“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.”