Stakeholder calls intensify as government stalls on genetic discrimination ban

Calls have intensified for the federal government to honour its commitment to outlaw genetic discrimination in life insurance, as stakeholders voice concerns over delays in legislative action.

Last month, the government unveiled Cancer Australia’s National Framework for Genomics in Cancer Control, a strategic blueprint aimed at guiding healthcare professionals, researchers, health services, and policymakers in integrating genomics into cancer care safely and effectively. Despite this, criticism persists regarding the government’s failure to uphold the basic rights of Australians.

The push to ban genetic discrimination in life insurance follows a joint submission from over 100 community organisations spearheaded by the public health genomics team led by Dr Jane Tiller from Monash University.

“We have heard concerns from community groups that life insurers may try to avoid the ban by using information such as ongoing medical care data to infer genetic status and future disease risk,” said Dr Tiller.

“Patients are nervous about whether the ban will really protect them, and reports from other countries such as Canada indicate that this risk must be addressed by our legislation. The submission covers these and other important considerations for policy-makers in turning this commitment into enforceable law.”

During the Senate Estimates hearings in February, the Treasury faced questions regarding delays in progressing the promised legislation. Treasury representatives confirmed that Treasury would continue to work towards developing an exposure draft of the legislation during caretaker mode.

“Genetic testing and genomic research have the capacity to rapidly transform healthcare in Australia by identifying the need for potentially life-saving treatment before an issue arises,” remarked AMA President Dr Danielle McMullen. “It is hard to believe we are in a situation where people, acting through fear of financial penalty, might forsake genetic testing that could save their life or the lives of their children or other relatives.”

“This must change,” Dr McMullen urged. “No one should have to fear undertaking genetic testing due to concerns over life insurance discrimination.”

Despite assurances from the government last year that legislation would be introduced to ban the use of adverse genetic test results in life insurance underwriting, effectively ending the industry’s ability to discriminate based on genetic information, such legislation has yet to materialise.

The joint submission outlines detailed recommendations for the design of legislation to protect individuals from genetic discrimination in life insurance. It also reinforces the need for a unified national strategy on genetic testing provision and regulation to ensure equitable access to testing across Australia.

“We need a ban to give consumers absolute certainty that their genetic status won’t be used by insurers to freeze them out of certain levels of cover,” Dr McMullen stressed. “A partial ban or a vague moratorium only leads to more uncertainty and deters patients from having life-saving genetic testing and participating in genomic research.”

Dr Tiller emphasised, “Given its bipartisan support, this reform should be prioritised immediately after the election. The consultation process is an indication that the Government intends to keep on working towards the ban.

“We are now calling on both the Government and the Opposition to commit to introducing legislation in the first 100 days of the new Parliament, to give Australians certainty about this urgent protection.”

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