An Auckland woman who lost her father, sister and grandmother to cancer says a genetic test probably saved her life — but she worries insurance fears are stopping other Kiwis from getting tested.
Genetic testing revealed Jody Bews-Hair carries a BRCA2 gene mutation, putting her at significantly increased risk of developing breast and ovarian cancer. Her sister died from cancer aged 48, her father at 34, and her grandmother at 46.
"If I hadn't had genetic testing, I would probably be dead."
The result allowed Bews-Hair 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."
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."
Her eldest daughter, Zoe, had 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."
Fear of genetic testing
Professor Andrew Shelling, a geneticist at the University of Auckland and spokesperson for Against Genomic Discrimination Aotearoa (AGenDA), said Bews-Hair's experience highlighted a wider problem.
New Zealand insurers can legally ask for and use genetic test results when assessing applications for life and health insurance.
Shelling said that can create 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."
Research involving New Zealand health professionals found more than half of respondents said patients often delayed or refused genetic testing because of concerns about insurance.
AGenDA is calling for a complete ban on insurers using genetic information in underwriting decisions. The group said New Zealand's current framework does not adequately protect people from genomic discrimination.
The Financial Services Council, however, said most people who undergo genetic testing had nothing to worry about.
Chief executive officer Kirk Hope said genetic test results are not commonly used when insurers assess applications.
"It's probably important for the very low number of individuals that are impacted, but the vast majority of New Zealanders — you know, genetic tests are not utilised in underwriting for life and health insurance."
Calls for Government action
Shelling and other AGenDA advocates appeared before Parliament's Health Committee on Wednesday, calling for the Government to begin consultation on the issue.
"The only comment we've had is prioritisation. That's the only comment we've had," health advocate Fay Sowerby said.
"We've been waiting for nearly two years for somebody to press the button," Shelling added.
Commerce and Consumer Affairs Minister Cameron Brewer said the issue is not currently part of the Government's work programme.
"People with concerns about how genetic information could affect their insurance are being encouraged to speak directly with their insurer."
For Bews-Hair, that's not enough. She said the potential consequences of delaying genetic testing are far more serious than the impact on an insurance policy.
"If I'd put it off for another year or two, it could have been too late."
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