MPs have been asked to pressure the government, in the hope it will use an existing law to protect insurance consumers from genomic discrimination.

Professor Andrew Shelling, an Auckland University cancer researcher and a leader of Against Genomic Discrimination Aotearoa (AGenDA), told the health committee that insurance misuse of DNA data was discouraging testing, which "undermines prevention, early diagnosis, family testing, genomic research and clinical childhood treatment".

The Contracts of Insurance Act 2024 received royal assent in November 2024, after years of development. Among its fixes, it empowers the minister of health to regulate against insurance companies demanding DNA tests or using genomic data to decide premiums or coverage.

No regulations have been written to effect such changes and AGenDA says no action has been taken by the government to enable those regulations.

Fay Sowerby, also from AGenDA, said: "Delay is a significant public health issue."

She pointed out that, within the OECD, New Zealand was at the far end - with Columbia and Costa Rica - being "without operative protection, [in] governing insurers use of predictive genetic test results".

"This is not theoretical," Sowerby said. "A New Zealand woman with a BRCA 2 variant reports paying premium, subject to a 50 percent loading for 15 years, despite risk-reducing surgery.

"Her daughter was quoted as 75 percent loading, despite testing negative for the familial variant. The cases reveal a one-way ratchet.

"Adverse results can increase premiums or restrict cover, while negative results and risk-reducing interventions may receive little favourable weight."

There are two barriers to regulation taking effect.

Before any regulations can be recommended, the act requires the minister of health to engage in consultation with both the Financial Markets Authority and those the minister considers may be substantially affected.

After two years, apparently no consultation had been undertaken. This week's calls were for the start of the consultation process.

A further roadblock has been the act's unusually nebulous commencement date. The whole act - or its parts - can come into effect by Order in Council or, if not, they automatically take effect when three years have passed since the royal assent.

"That very long delay comes to an end in November 2027. AGenDA wants consultation to begin this year, so regulations can be ready to go, when the bill reaches its default date for coming into effect.

The genetic testing component (or any part of the act) could come into force before that date, if the government was to recommend to the governor-general that it do so.

This part of the act received cross-party support when it was debated, so MPs from across the House asked what reason AGenDa had been given for the lack of progress.

Sowerby told them: "The only comment we've had is 'prioritisation'."

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