NZFBOC is a member of the AGenDA (Against Genomic Discrimination in Aotearoa) coalition, which seeks to limit insurance companies’ access to personal genetic information. AGenDA is a New Zealand coalition of individuals and organisations who want to ensure that people can get tested and access their genetic information, and in particular any indications of possible health risks, without consequence.
Update May 2025
On Thursday, 15 May 2025, AGenDA met with the new Minister of Commerce and Consumer Affairs, Scott Simpson. along with Tom Simcock, Manager of Financial Markets, Ministry of Business, Innovation & Employment (MBIE).
A consultation paper is currently being developed, and a formal consultation period will last approximately eight weeks. Conclusions from this process will be presented to Cabinet towards the end of the year, followed by a recommendation to the Minister. This timeline supports implementation ahead of the next general election in 2026.
AGenDA is continuing to work closely with MBIE officials to ensure they have access to the relevant information as they develop their consultation paper. It was agreed that AGenDA will collaborate with Todd Stephenson—ACT’s Health spokesperson and a member of the Finance & Expenditure Select Committee—to organise a genomics education session for Ministers.
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The Finance & Expenditure Select Committee previously oversaw the Contracts of Insurance Bill and its associated regulations, including Subpart 4A on Genetic Testing, which requires insurers to comply with regulations made under Section 86B.
It is anticipated that the upcoming consultation document will present a range of options. As before, AGenDA will advocate for a complete ban on genomic discrimination.
Update October 2024
The Contracts of Insurance Bill has passed its 3rd reading on 17 October 2024 - more here.
Genetic test means (a) a test that analyses any DNA, RNA, or chromosome for any purpose including the prediction of disease or vertical transmission risks, or monitoring, diagnosis, or prognosis (regardless of the source of the DNA, RNA, or chromosome); or (b) a test that analyses any component of gene expression (for example, a protein) or any metabolite for the purpose of detecting or predicting genotypes, phenotypes, or genetic variants (whether or not there are other purposes for the test) relevant contract means a life policy or contract of health insurance (including a proposed life policy or contract of that kind).
About AGenDA
Against Genomic Discrimination Aotearoa, or AGenDA, was formed in 2021 by a group of New Zealand clinicians, academics, scientists, lawyers, and representatives from Māori, Pasifika, medical charities and patient groups. The primary goal of AGenDA is to address the issue of genomic discrimination by the health and live insurance industries that exist in New Zealand.
New Zealand is falling behind other developed nations with similar healthcare systems in this regard. In 2017, Canada introduced a ban on the use of genetic test results to discriminate in any area, while in 2019, the Australian life insurance industry introduced a five-year self-regulated moratorium on the use of genetic test results.
AGenDA introduced this discussion in a September 2021 article in “The Conversation”, and the issue was further elaborated on in a March 2022 editorial in New Zealand Medical Journal.
In 2023, a group of AGenDA members produced an article with the first qualitative and quantitative data assessing the experiences of healthcare professionals in New Zealand with genetic insurance discrimination. New Zealand Medical Journal: “Genetic discrimination by insurance companies in Aotearoa New Zealand: experiences and views of health professionals”.
