Breast Cancer Foundation NZ is pushing for consultation to end genetic discrimination in insurance

Imagine finding out you carry a BRCA1 or BRCA2 gene mutation, the same genetic change that can run through generations of whānau, raising the risk of breast and ovarian cancer. It's frightening news to receive.

It's also, in a practical sense, useful knowledge. It lets you and your doctors act early, whether that's more frequent screening, risk-reducing surgery, or simply making informed decisions about your health.

Now imagine being told this proactive, recommended testing, could mean an insurer charges you more for life insurance, or refuses to cover you at all.

That's the reality for many New Zealanders, and it's why Breast Cancer Foundation NZ has added its voice to a growing call for the Government to start a long-overdue conversation about fixing it.

About five to ten percent of breast cancer diagnoses have an inherited cause. If you carry a genetic mutation (like BRCA 1 or 2), testing means you and your whānau can act before cancer develops. But in New Zealand, insurers are currently allowed to ask whether you've had a genetic test, and to use the result when deciding whether to offer you cover, and at what price.

We hear from people who have made hard choices because of it. Putting off a test they were entitled to, hesitating to encourage a sibling or parent to get tested, or finding themselves paying huge premiums or being turned down for cover after doing the testing. When fear of insurance consequences becomes a reason to avoid a test that could save your life, something in the system isn't working the way it should.

New Zealand is one of very few OECD countries, alongside Colombia and Costa Rica, without any protection against discrimination like this. 35 of 38 countries have introduced protection, whether through law, regulation, or industry agreement. Australia will join them on 8 October 2026, when a ban on insurers' use of genetic-test results comes into effect.

Breast Cancer Foundation NZ, along with clinicians, researchers and other NGOs, is asking the Government to start the consultation on this issue before the end of 2026.

This push follows Against Genomic Discrimination in Aotearoa (AGenDA) coalition's presentation to Parliament's Health Select Committee on 19 August, where Fay Sowerby and Dr Andrew Shelling set out the case for regulating insurers' use of genetic test results.

This work sits at the heart of our vision of zero avoidable deaths from breast cancer. Early detection and risk-reduction are two of our strongest tools against breast cancer and testing shouldn't come with a financial penalty attached. Powered by your support, we'll keep advocating until it doesn't.

You can help by sharing this post, so more people understand what's at stake. If you're affected by this issue, know that you're not alone and we'd welcome hearing your story if you're comfortable sharing it. Contact us at intouch@bcf.org.nz

Have questions about genetic testing and hereditary breast cancer? Visit our Genetics & BRCA resources or reach out to our nurses for support.