Kiwis should be ‘extremely concerned’ about genetic discrimination

Four years ago, Annick Greenhill discovered that she had a genetic mutation in the BRCA1 gene, which puts her at risk of developing breast cancer.

While discovering the potentially life-saving gene, it led to challenges with insurance that left her in a difficult situation.

She said insurers were concerned that the BRCA1 gene put her at high risk, and she had to be on a premium health insurance plan to be covered.

In New Zealand, insurance companies are allowed to demand to see the results of genetic testing, which has led to accusations of discrimination.

Read more:
* Beware of DNA health tests by pedigree companies
* A preventive double mastectomy is worth it for a mother of two living with a BRCA gene mutation.
* I tried to ignore the genetic warnings about cancer, and it could have been fatal

After returning to New Zealand, Greenhill struggled to find an insurance company willing to cover the gene. Her insurance broker told her that most insurance companies would rule out any gene-related treatment, or only cover it after preventative surgeries.

“I thought the fact that I knew I was a carrier should somehow reduce my overall risk to the insurance company because in the early detection program, I was a carrier whether I knew it or not.”

Breast Cancer Foundation New Zealand CEO Ah Lynn Rayner said insurance discrimination around the BRCA gene is a serious problem, and the law needs to change.

“As long as New Zealand insurers are able to ask about the result of a genetic test, people who have the BRCA gene will be discriminated against, even though they may not develop breast cancer.”

Greenhill does not regret her decision to undergo genetic testing, but is concerned that others in her position will be discouraged by the discrimination she faces.

Abigail Dougherty/Staff

Greenhill does not regret her decision to undergo genetic testing, but is concerned that others in her position will be discouraged by the discrimination she faces.

Greenhill eventually said the UltraCare policy is with Southern Cross, the only insurance company that will provide coverage related to the gene.

However, you should have been on the second highest plan, and only after a three-year hiatus would you be eligible for BRCA-related coverage.

She said health insurance costs the family $580 a month, a “big cost.”

Southern Cross confirmed that because of the gene, she was excluded from monitoring for the BRCA gene defect and from preventive treatment for three years.

She also applied for an additional $300,000 a year chemotherapy coverage, but it was capped at $60,000.

Southern Cross said that while Greenhill would not be excluded from the Chemo 300 plan, it would need to meet its terms and conditions, which included potential family history exclusions.

Rosa Woods/Staff

Ashley Stallard has the BRCA gene and has been at high risk of developing breast cancer. She chose to have a prophylactic mastectomy at the age of 23 (video first posted in October 2019)

While she’s grateful to Southern Cross who provided some coverage, she said she still feels like she’s being penalized for gaining a better understanding of her health.

Greenhill did not regret her decision to take the test, but was worried that others in her position would be frustrated by the genetic discrimination she faced.

It’s a dilemma that 22-year-old social support worker Georgia Eve faces.

She was planning to donate one of her eggs to a fertility organization, until she learned that it could lead to genetic discrimination from insurance companies.

Egg donors are required to undergo genetic testing as part of predation health checks. But potential donors are told that the results of this test can be legally required and used by insurers in underwriting decisions.

Although she had wanted to donate an egg for some time, the prospect of genetic discrimination later in life was a “deal-breaker,” Eve said.

“It’s a bit risky. I am a person who wants to travel, so I am concerned about having access to travel insurance later in life. I think it might be best not to do that,” she said.

Eve said insurers’ stance on genetic testing affects public health more broadly.

If insurance companies convince people not to get genetic testing, they lose out on the chance to live a healthier life. But in the current situation, many people choose not to know.”

Georgia Eve was considering donating an egg to a fertility service.  But to do so, she had to undergo a genetic test, and in New Zealand an insurance company could ask to see the results.

Abigail Dougherty/Staff

Georgia Eve was considering donating an egg to a fertility service. But to do so, she had to undergo a genetic test, and in New Zealand an insurance company could ask to see the results.

The New Zealand Medical Journal recently reported that a US survey found that 28% of participants refused genetic testing due to concerns about insurance discrimination.

But Australia and Canada are enacting legislation to protect individuals from genetic discrimination by insurance companies.

Canada, in 2017, imposed a complete ban on the use of genetic test results to discriminate, including in insurance and employment.

The Australian life insurance industry, in 2019, imposed a five-year ban on the use of genetic testing in underwriting.

New Zealand insurers did not follow suit.

Professor Andrew Schilling, acting director of the University of Auckland Center for Cancer Research, said New Zealand had been a “significant divergence” from other first world countries in the way it handled genetic information.

Schilling said people should be “extremely concerned” about insurance companies using genetic information, and that the Patient Advocacy Group Against Genetic Discrimination Aotearoa, had been calling for a complete ban.

Genetic testing allowed people to make informed decisions about health care, he said, and people were refusing to take the test because of the potential insurance consequences.

“For people at high risk of genetic diseases, choosing not to get tested could have serious health implications.”

Although there is no data for New Zealand to draw from, it is believed that it will be similar to the rest of the world, where it was between 10% and 30% of people test refused.

“This is an unusual number of people and is likely to have a significant impact on people at risk of developing serious genetic diseases.”

Southern Cross’s chief sales and marketing officer, Keri Boyle, said it did not add a pre-existing conditional exclusion as a result of a genetic defect, and would not normally increase premiums or refuse to issue a policy based on that information.

However, it may exclude any additional counseling, testing or treatment required in its policy as a result of an abnormality.

Southern Cross said that in the past five years, 51 members have disclosed a genetic abnormality or mutation, and 51 people have exceptions applied to their policy as a result of genetic abnormalities.

Three other insurers said they are members of the Financial Services Council (FSC) and have adhered to the council’s code of conduct and guidelines on genetic testing.

Richard Kleppen, chief executive of the FSC, said the issue of genetic testing was “complex”.

“To ensure insurance remains sustainable and equitable for all customers, some insurance companies may require customers to disclose known information about their genetic test results,” Kiplin said.

But he said insurers were never required to do genetic testing.