A Life-Saving Test, a Persistent Premium
Jody Bews-Hair, an Auckland woman who lost her father, sister, and grandmother to cancer, says a genetic test probably saved her life. The test revealed she carries a BRCA2 gene mutation, which significantly increases the risk of developing breast and ovarian cancer. Her sister died from cancer at age 48, her father at 34, and her grandmother at 46.
"If I hadn't had genetic testing, I would probably be dead," Bews-Hair told 1News.
The result allowed her to take preventative action. "I've had a double mastectomy and reconstruction, I've had my ovaries and fallopian tubes removed. Did all of that at the age of 40," she said.
But despite dramatically reducing her risk, Bews-Hair said her life insurance premium remained 50% higher because of her genetic result. "I no longer had the body parts that could give me that cancer, and they wouldn't remove the loading," she said.
Her eldest daughter, Zoe, has since tested negative for the family's BRCA2 mutation. "She's the first person in three generations to test negative, and they still won't remove the loading from her," Bews-Hair said.
The Wider Problem: Insurance Fears Deter Testing
Professor Andrew Shelling, a geneticist at the University of Auckland and spokesperson for Against Genomic Discrimination Aotearoa (AGenDA), said Bews-Hair's experience highlights a broader issue. New Zealand insurers can legally ask for and use genetic test results when assessing applications for life and health insurance.
Shelling said this creates a disincentive for people to find out whether they carry a potentially dangerous genetic mutation. "We've seen that between 10 and 30% of people around the world, due to genomic discrimination, are not having their genes tested," he told 1News. Over half of New Zealand health professionals report patients delaying or refusing genetic testing due to insurance concerns, he added.
AGenDA is calling for a complete ban on insurers using genetic information in underwriting decisions. Shelling and health advocate Fay Sowerby appeared before Parliament's Health Committee on Wednesday to press the case.
Legislative Promise, No Action
The Contracts of Insurance Act 2024 received royal assent in November 2024, after years of development. Among its provisions, it empowers the minister of health to regulate against insurance companies demanding DNA tests or using genomic data to decide premiums or coverage. However, no regulations have been written to effect those changes, and AGenDA says no action has been taken by the government to enable them.
Sowerby told the committee, "Delay is a significant public health issue." She noted that within the OECD, New Zealand is at the far end—along with Colombia and Costa Rica—being "without operative protection governing insurers' use of predictive genetic test results."
"This is not theoretical," Sowerby said. She cited a New Zealand woman with a BRCA2 variant who reports paying a premium subject to a 50% loading for 15 years, despite risk-reducing surgery. Another case involved a daughter quoted a 75% loading despite testing negative for the familial variant. Sowerby described these as revealing a "one-way ratchet": adverse results can increase premiums or restrict cover, while negative results and risk-reducing interventions may receive little favourable weight.
Barriers to Implementation
Two barriers stand in the way of regulation. Before any regulations can be recommended, the act requires the minister of health to consult with the Financial Markets Authority and those the minister considers may be substantially affected. No consultation has yet been undertaken, according to RNZ's report.
The act also has a nebulous commencement date: it can come into effect by Order in Council, or automatically after three years from royal assent, which would be November 2027. AGenDA wants consultation to begin this year so regulations can be ready by that default date. The genetic testing component of the act could come into force earlier if the government recommended to the governor-general that it do so, according to RNZ.
The genetic testing component received cross-party support during the act's debate, and MPs at the committee asked what reason AGenDA had been given for the lack of progress. Sowerby replied: "The only comment we've had is prioritisation."
Political Response
Commerce and Consumer Affairs Minister Cameron Brewer said the issue of genetic information in insurance is not currently part of the government's work programme. He encouraged people with concerns about genetic information affecting insurance to speak directly with their insurer, as reported by 1News.
For Bews-Hair, the stakes are personal. She said delaying testing could have been fatal: "If I'd put it off for another year or two, it could have been too late."