Campaign group Against Genomic Discrimination Aotearoa has pressed the New Zealand government to ban the use of genetic and genomic test results in life cover underwriting.

MPs passed legislative changes in 2024, but no follow-up consultation on regulations has occurred.

“Parliament has already provided a regulatory pathway through … the Contracts of Insurance Act,” the group’s co-lead Fay Sowerby said on LinkedIn.

“However, the required consultation must occur before regulations can be made. We understand that consultation documents have been prepared, but consultation to determine the appropriate New Zealand framework has not begun.”

Ms Sowerby and Andrew Shelling, who founded the group, appeared before parliament’s Health Committee this month pressing for consultation to start this year.

“Our message was simple: a genetic test should help people protect their health and the people they love, and not penalise them when they apply for insurance,” Ms Sowerby said.

“Yet existing insurance settings may penalise people for obtaining and acting on that information. Insurance concerns are already deterring some people from testing and genomic research … Australia has prevented genetic results from being used adversely in private health insurance since 2007 and, from October 8 2026, will prohibit their adverse use in life-insurance underwriting.

“Australia’s action is particularly relevant because our insurance markets are substantially integrated, especially through life reinsurance.”

Professor Shelling says fears about higher premiums, exclusions or difficulties obtaining insurance may discourage some New Zealanders from undertaking potentially life-saving genetic testing.

“As genetic and precision medicine become an increasingly routine part of healthcare, we believe regulatory settings should encourage people to benefit from these advances rather than create barriers through fear of insurance consequences,” he said on LinkedIn.

“Our message to the committee was simple: genetic testing should be a tool for prevention, earlier diagnosis and better health outcomes, not a source of discrimination.”

Breast Cancer Foundation New Zealand supports the advocacy group’s push.

“This work sits at the heart of our vision of zero avoidable deaths from breast cancer,” the foundation said.

“Early detection and risk-reduction are two of our strongest tools against breast cancer and testing shouldn’t come with a financial penalty attached … we’ll keep advocating until it doesn’t.”