Currently, New Zealand insurers can use genetic test results when underwriting insurance policies, potentially leading to higher premiums or policy denials. Against Genomic Discrimination in Aotearoa (AGenDA) is pushing for a ban on the use of genetic information in insurance decisions, mirroring protections seen in other countries.
BCAC Secretary Fay Sowerby, who is also is a spokesperson for AgenDA, filed this report on the group’s latest activity.
On Tuesday 12 August 2024, AGenDA’s Fay Sowerby and Andrew Shelling organised and facilitated an education session on genetic discrimination in insurance for members of parliament, hosted by Todd Stephenson MP.
We were joined at that session by two New Zealanders who took drastic steps to prevent deadly hereditary cancers who shared that insurance discrimination is stopping others from doing the same - and costing lives. Jody Bews-Hair (Trustee, NZ Familial Breast and Ovarian Cancer Trust) and Julian Grennell (President and Chair of the Cancer Society), called for urgent action to protect New Zealanders from being penalised by insurers for their genetic test results.
“If it weren’t for genetic testing, I’d probably be dead,” said Jody, who carries the BRCA2 mutation that dramatically increases the risk of breast and ovarian cancer. After losing multiple family members to genetic cancers, she underwent preventive surgery that likely saved her life. But she warns many avoid testing out of fear. “Our daughters have a 75% life insurance premium loading because of my results. That fear stops people from testing - and that can cost lives.”
Julian, who carries the CDH1 gene mutation linked to hereditary diffuse gastric cancer, chose to have his entire stomach removed to prevent the disease.
“If you do the responsible thing and get tested, you can be punished for it,” he said. “That’s not how a fair system should work.”
Genetic discrimination occurs when insurers use a person’s genetic test results to raise premiums, exclude cover, deny insurance, or limit payout.
“There is considerable evidence, both nationally and internationally, that between 10 and 30% of individuals decline lifesaving medical genetic testing or participation in genomic research studies because of fears of genomic discrimination,” says Professor Andrew Shelling, University of Auckland, AGenDA Lead.
The United States, Canada, United Kingdom, Germany, Finland, Norway, Switzerland, South Korea, Australia and a number of Asian countries already restrict or prohibit this practice.
"New Zealand risks being left behind. Every month we wait, more New Zealanders are being tested; but without protections this means they and their families remain exposed to insurance discrimination. With the Contracts of Insurance Bill passed in November 2024, the Government has the power to act." says Fay.
"Discrimination should never be a roadblock to the benefits of modern medicine - for individuals, the health system, or the economy." says Gretchen Weightman, AGenDA spokesperson.
AGenDA understands a consultation paper is with the Minister and expects a formal consultation process to be initiated in the “near future”.
Update from Australia:
The Australian Federal Government’s Assistant Treasurer announced last week that legislation for a full ban on genomic discrimination in life insurance is now being drafted.
Dr Jane Tiller, Monash University, commented that "The Australian government has committed to a total legislative ban, with no exceptions, limits, and caps. The life insurance industry has also supported this legislation. We hope our neighbours in New Zealand follow our lead in protecting people fully against genetic discrimination."
18 August 2025
