Cancer researcher urges MPs to activate genetic discrimination protections in insurance law
Auckland University cancer researcher Professor Andrew Shelling has asked MPs to pressure the government into switching on long-dormant protections against genomic discrimination in the Contracts of Insurance Act 2024, telling Parliament's health committee that insurance companies' use of DNA data is discouraging genetic testing and undermining clinical care.
Shelling leads the advocacy group Against Genomic Discrimination Aotearoa (AGenDA). He told the committee that insurers' use of genetic test results "undermines prevention, early diagnosis, family testing, genomic research and clinical childhood treatment."
The Contracts of Insurance Act received royal assent in November 2024, nearly two years ago. The law allows the minister of health to write regulations stopping insurance companies from demanding DNA tests or using genetic data to set premiums or decide whether to cover someone. So far, no government action has been taken to put those provisions into practice.
Before any regulations can be recommended, the minister must consult with the Financial Markets Authority and with anyone the minister considers may be substantially affected. As of this week, no such consultation appears to have happened.
AGenDA's Fay Sowerby told the committee that within the OECD, New Zealand sits alongside Colombia and Costa Rica as countries "without operative protection" governing insurers' use of predictive genetic test results. The legislative mechanism to fix this has been on the statute book since late 2024, making the gap between having the law and using it notable.
Sowerby gave a concrete example: a New Zealand woman with a BRCA 2 variant — a genetic change linked to higher breast cancer risk — paid a 50 percent premium loading for 15 years despite having risk-reducing surgery. Her daughter was quoted a 75 percent loading despite testing negative for the family's variant.
MPs from across the House asked what reason AGenDA had been given for the lack of progress. Sowerby said the only comment received was "prioritisation."
The act contains a commencement clause, meaning the whole act or parts of it can come into effect by Order in Council — a formal government decision — or automatically take effect three years after royal assent. That default date falls in November 2027. AGenDA wants consultation to begin this year so regulations are ready when the act reaches that date.
Health professionals have been raising the alarm on this issue for some time. In April 2023, RNZ reported that clinicians were accusing insurance companies of using genetic testing results to deny coverage and hike premiums, with calls for new laws to address the practice. The Contracts of Insurance Act 2024 was the legislative response, but the gap between assent and activation has left consumers exposed in the meantime.
The broader context here is one the Press Gallery has watched play out across successive governments: Parliament passes legislation with regulation-making powers, then the executive sits on those powers. The genomic protections in the act were never going to take effect on their own without ministerial initiative, and the commencement clause's November 2027 backstop means the government faces no hard deadline for another 15 months. AGenDA's strategy of pushing for consultation now, rather than waiting for the default date, is an attempt to close that window of inaction before it stretches further.
For practitioners working in health policy and insurance regulation, the situation highlights a familiar fault line. The substantive law exists. The regulatory infrastructure does not. Consumers with familial genetic variants continue to face premium loadings or coverage denials in a regulatory vacuum that Parliament intended to fill two years ago. Whether the health minister moves on consultation before the November 2027 default commencement will determine whether those protections arrive by design or by default.
