Protection against genetic discrimination in insurance cover
Unlike in many other OECD countries, in New Zealand insurers can legally ask for and use genetic and genomic test results to make decisions about the cost of premiums and the level of insurance cover they are willing provide to an individual.
For many New Zealanders the risk of higher premiums or of no insurance cover at all puts them off seeking genetic (and genomic) testing, which then prevents them from seeking the most appropriate care for their condition.
For people living with rare disorders advancements in genomics and precision medicine are increasingly becoming a game changer, and people need to feel confident about benefitting from these.
Rare Disorders NZ is part of the coalition AGenDA (Against Genomic Discrimination Aotearoa), which strongly advocates for protections against the use of genetic and genomic test results in insurance underwriting in New Zealand.
Advocacy timeline
- May 2024: AGenDA made written and oral submissions to the Contracts of Insurance Bill to address genetic discrimination.
- 3 September 2024: The Finance and Expenditure Select committee presented its final report recommending that the Governor General on a recommendation of the Minister, prohibit the conduct of insurers by conducting a full policy development and consultation process prior to recommending regulations.
- 14 November 2024: It passed its 3rd reading, progressed through the Committee of the Whole House.
- 19 August 2026: AGenDA co-leads Professor Andrew Shelling and Fay Sowerby briefed Parliament’s Health Committee on genetic discrimination in insurance, and asked the Committee to recommend to the Government that consultation under sections 83–85 of the Contracts of Insurance Act 2024 be initiated prior to the end of 2026.
It is understood that the consultation document has been prepared, but the process has not proceeded because Cabinet has not authorised it.
How you can support
Download the template letter to write to your local electorate or list MP, and ask them to support the commencement of consultation, so all relevant evidence and concerns can be formally examined.
Template letter
