‘Abhorrent catch-22’: Labor still consulting on promised first-term insurer regulation
The Coalition and crossbench MPs have turned on the Albanese government for a ‘cruel’, ‘confusing’ delay to the universally supported ban on insurers exploiting genetic test results.
Australians relegated to an “abhorrent catch-22” that is holding back the progress of genetic medicine are in revolt after government documents revealed a ban on life insurers denying service based on private health information remained stuck in consultation.
In a December 2024 Treasury update, the Albanese government conceded it had no time frame to implement legislation banning life insurers from exploiting the genetic information of customers, despite bankrolling medicine dependent on better access to genomic tests and having promised to prevent the practice within its first term.
The Treasury Regulatory Initiatives Grid lists the genetic discrimination ban for “consultation on design of the measure” in Q1 2025, placing the legislation further back in the drafting backlog than previously acknowledged.
Risk-rated insurance, namely life insurance, is the one sector still cleared to change rates or refuse service based on someone’s predisposition to heritable diseases. Despite life insurers holding themselves to a partial prohibition on the practice since July 2019, insurance discrimination is the main reason patients avoid testing.
The Australian understands Financial Services Minister Stephen Jones intends to keep consultation short and hopes to clarify a legal definition for genetic information in order to prevent loopholes or future revisions to the ban.
He defended the delay and put responsibility for it on insurers.
“Genetic research is constantly evolving so we need to ensure our legislation captures the intent of our decision and does not have unintended consequences,” Mr Jones said. “It is normal practice for a government to consult on draft legislation. While we work as quickly as possible to get this right, there is nothing stopping life insurers from moving voluntarily.”
Treasury estimated 34 of its 71 future policies required consultation, 27 of which needed to be delivered by March.
If there were a change in government before the next opportunity to pass the legislation, it is unclear if the ban could still pass into law, or if a Coalition government would propose its own version of the legislation.
Opposition financial services spokesman Luke Howarth called the delay further proof of Labor’s preoccupation with “announcement, rather than the follow-through”.
North Sydney MP Kylea Tink on Tuesday told The Australian the delay was “cruel” and a potential broken promise that “meant the difference between early-stage diagnosis and late-stage diagnosis” for hundreds of Australians.
“I’m expecting to see this legislation in February. I don’t know what the Treasury documents say, I haven’t seen them. I only have the minister’s word,” Ms Tink said.
“If that legislation is not tabled in February, it is not going to get done in this term, and this government will have failed to deliver what I would suggest is probably its simplest potential legislative reform in the 47th parliament.”
Mr Jones announced the ban in September, but Ms Tink said he should not have “taken the win to achieve a headline” if he knew there was more consultation to be done.
“It doesn’t take three years to get this stuff right. This was such an easy win to take. There was multipartisan support, there’s political will to do it,” Ms Tink said.
“The government has created a completely abhorrent catch-22 for people.
“A minister has misspoken and has misled the Australian public in terms of what this government was prepared to do and able to do.”
When contacted for comment, Mr Jones did not recommit to delivering within the term, as he had in November.
Breast cancer drug Olaparib this week was listed for subsidy on the Pharmaceutical Benefits Scheme, bringing broader access to genetically targeted treatments.
However, geneticist and genomics advocate Jane Tiller argued the failure to legislate a life insurer ban kneecapped the Olaparib rollout.
“Unfortunately, another wonderful announcement about medical progress in genetic cancer treatments has been overshadowed by the lack of protections against genetic discrimination,” Dr Tiller said.
“Patients, clinicians and the public are confused about the status of this protection.
“I can’t wait for the day when advancements in medicine and genomics can simply be celebrated, not overshadowed by discrimination fears.”
Comedian Michelle Brasier lost her father and brother suddenly to heritable cancer. Despite her likely risk of inheriting the same predisposition, she has avoided accessing genetic testing over insurance risks. It’s a risk that keeps her from accessing personalised treatment for any potential diagnosis.
“(Testing) was presented as an option to me after my brother died from a similar cancer that had taken my father … during that time I found out about the insurance stuff and figured I would wait it out until somebody fixed it, and I’m still waiting it out,” Brasier said.
“A lot of these genetic cancers … can take you really fast. My dad was diagnosed and he died within a week.”
The long wait had eroded Brasier’s trust in government.
“I’m scared personally that it could get pushed back further and it might not go through. I’m also scared that I have to be afraid. I’m scared that I can’t trust these things to be done,” she said.
“It’s another year of people not knowing, of doctors not being able to give a clear recommendation to the patient. It’s another year of confusion. People who are up against difficult health battles don’t need more confusion. They need clarity and they need empathy.”
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