Genetic discrimination protections exist on paper and nowhere else

A law that exists but does nothing

New Zealand has a law on the books that could stop insurers using genetic test results to hike premiums, restrict cover or deny policies. Parliament passed it with cross-party support. The minister has the power to activate it. And nearly two years later, nothing has happened.

The Contracts of Insurance Act 2024 received royal assent on 15 November 2024. Buried in it is section 86B, which gives the Governor-General power, on the minister’s recommendation, to make regulations barring insurers from requiring genetic tests or mandating disclosure of results when underwriting life and health cover. But the provision is not self-executing. It needs the minister to consult the Financial Markets Authority and affected parties, draft regulations, and gazette them.

None of that has happened. Commerce and Consumer Affairs Minister Cameron Brewer has confirmed the issue is not currently part of the Government’s work programme. This is not a call for more regulation. It is a call for the executive to use regulation Parliament already passed.

The one-way ratchet

Right now, insurers cannot force you to take a new genetic test. But they can demand you disclose the results of any previous one, and use it against you.

Take Jody Bews-Hair, an Auckland woman carrying a BRCA2 mutation. Her father died of cancer at 34, her sister at 48, her grandmother at 46. She underwent preventive surgery to slash her risk. Her insurer still charged a 50% premium loading. “I no longer had the body parts that could give me that cancer, and they wouldn’t remove the loading,” she told 1News.

That is the “one-way ratchet” Fay Sowerby, co-leader of Against Genomic Discrimination Aotearoa (AGenDA), described to Parliament’s health committee. Adverse results push premiums up, while negative results and risk-reducing surgery get little weight in the other direction. Bews-Hair’s daughter was quoted a 75% loading despite testing negative for the family variant.

Why this is a business problem

The chilling effect is measurable, and it undermines real spending. Research cited by 1News found between 10% and 30% of people globally skip genetic testing out of discrimination fears. In New Zealand, a 2023 survey of health professionals found more than half had seen patients delay or refuse testing over insurance concerns, with one describing patients declining tests that could save lives across a whole family.

For employers pouring money into workplace health and preventive care programmes, that fear is a direct drag on value. If staff are too scared of insurance consequences to get screened, the investment is wasted. Professor Andrew Shelling of the University of Auckland told MPs the misuse of DNA data “undermines prevention, early diagnosis, family testing, genomic research and clinical childhood treatment”.

An outlier alongside Colombia and Costa Rica

New Zealand is not just lagging, it is a genuine outlier. Within the OECD, it sits alongside Colombia and Costa Rica as a country with no operative protection on insurers’ use of predictive genetic results. Canada legislated a full ban in 2017 that survived a Supreme Court challenge. Australia introduced a moratorium in 2019. The UK, Singapore and the US all have restrictions. MBIE’s own 2025 proactive release noted no material evidence of market disruption in any of them.

The industry’s adverse-selection argument does not hold up either. Peer-reviewed analysis published in the New Zealand Medical Journal in 2022 found women with BRCA1/2 variants do not load up on life insurance, and that early screening and surgery cut cancer risk in ways that benefit insurers too.

The November 2027 cliff

Here is the hard business edge. The Act defaults to full commencement on 15 November 2027, regulations or not. If the minister has not consulted, drafted and gazetted the rules by then, the Act comes into force with the regulatory power intact but the actual regulations missing. That leaves every life and health insurer underwriting in New Zealand facing legal uncertainty about what the rules even are.

MBIE had sought approval in 2025 for a six-week consultation, with draft regulations expected by year end. It never delivered. AGenDA’s ask is hardly radical: start consultation in 2026 so the rules are ready by the deadline. The response Sowerby says the group received was one word: “prioritisation”.

The law arrives in November 2027 whether the Government acts or not. The only open question is whether the industry gets workable regulations by then, or a legal vacuum. Every month of delay narrows the window for insurers to adapt their underwriting, and leaves patients making health decisions in the shadow of a policy nobody has bothered to switch on.

Sources

• RNZ: The House — Government inaction undermines early cancer diagnosis and treatment (2026-08-23)
• RNZ: The House — Government inaction undermines early cancer diagnosis and treatment (2026-08-20)
• 1News: ‘I’d probably be dead’ — Woman warns of gene testing insurance fears (2026-08-21)
• LawNews: Ban on genetic discrimination by health and life insurers is urgent, lobby group tells select committee
• RNZ: Insurance companies accused of using genetic tests to deny coverage, hike premiums (2023-04-28)
• NZ Medical Journal: Genomic discrimination in New Zealand health and life insurance (2022-03-11)