Four years ago, Annik Greenhill discovered she had an inherited mutation of the BRCA1 gene, which predisposes her to breast cancer.

While discovering the gene potentially saved her life, it led to challenges with insurance that have left her in a difficult position.

Insurance companies were concerned the BRCA1 gene made her high risk, and she had to be on a premium health insurance plan to be covered, she said.

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

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After returning to New Zealand, Greenhill struggled to find an insurance company willing to cover the gene. Her insurance broker told her most insurers would exclude any treatment relating to the gene, or only cover her after prophylactic surgeries were undertaken.

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Annik Greenhill is a BRCA1 carrier and has been affected by genetic discrimination as a result.

I thought the fact I know I am a carrier should in some ways reduce my overall risk to an insurance company because I am in an early detection programme, I was a carrier whether I knew it or not.

Breast Cancer Foundation NZ chief executive Ah-Leen Rayner said insurance discrimination around the BRCA gene was a serious problem, and a law change was needed.

So long as New Zealand insurers are able to ask about genetic test result, people with the BRCA gene will be discriminated against, even though they might not get breast cancer.

Greenhill eventually took out an UltraCare policy with Southern Cross, the only insurer who would offer coverage related to the gene, she said.

However, had to be on the second-highest plan, and only after a three-year stand down period would she be eligible for BRCA related covershe said.

Health insurance cost the family $580 a month, a significant expense, she said.

Southern Cross said that it would cover cancer treatment without a stand down period. But because she already knew she had BRCA1, she would not be covered for monitoring the gene or for prophylactic treatment for three years.

She also applied for additional chemotherapy cover of $300,000 a year, but was capped at $60,000.

Southern Cross said while Greenhill would not be excluded from taking out a Chemo 300 plan, she would need to meet the terms and conditions, which included possible exclusions for family history.

ROSA WOODS/STUFF

Ashleigh Stallard has the BRCA gene and was faced with a strong risk of developing breast cancer. She chose to have a preventive mastectomy at age 23. (Video first published in October 2019)

While grateful Southern Cross offered some cover, she said it still felt like she was being punished for gaining a better understanding of her health.

Greenhill did not regret her decision to get tested, but was concerned others in her position would be discouraged because of the genetic discrimination she encountered.

Its a conundrum that Georgia Eve, a 22-year-old social support worker, is grappling with.

She was planning to donate one of her eggs to a fertility organisation, until she heard it could lead to genetic discrimination from insurers.

Egg donors are required to take a genetic test as part of predonation health checks. But potential donors are told the results of that test can be legally asked for and used by insurers in underwriting decisions.

Despite having wanted to donate an egg for some time, the potential for genetic discrimination in later life was a dealbreaker, Eve said.

Its a bit of a risk to take. I am someone who wants to travel, so I am concerned about affording access to travel insurance later in life. I am thinking it might be better not to do it, she said.

Eve said insurers position on genetic testing was affecting broader public health.

If people are being dissuaded by insurance companies not to get genetic testing, they are losing an opportunity to live healthier lives. But as it stands many people are choosing not to know.

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

A United States survey found 28% of participants declined genomic testing because of concerns about insurance discrimination, the New Zealand Medical Journal reported recently.

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

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

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

New Zealand insurance companies have not followed suit.

Auckland University Centre for Cancer Research acting director Professor Andrew Shelling said New Zealand was a significant disparity from other first-world countries in the way it handled genetic information.

People should be very concerned about insurers using genomic information, and the patient advocacy group Against Genetic Discrimination Aotearoa, was calling for a complete ban, Shelling said.

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

For people who are at risk of genetic conditions, choosing not to be tested may have serious health impacts.

While there was no New Zealand data to draw from, he believed it would be similar to the rest of the world, where between 10% and 30% of people were declining testing.

Thats an extraordinary number of people and is likely to be having a significant impact on people at risk of serious genetic disease.

Southern Cross chief sales and marketing officer Kerry Boielle said it did not add a pre-existing condition exclusion as a result of a genetic abnormality, and typically would not increase premiums or refuse to issue a policy based on that information.

However, it may exclude any consultations, further tests, or treatment required in its policy as a result of an abnormality.

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

Three other insurance companies said they were members of the Financial Services Council (FSC) and complied with the councils code of conduct and guidelines around genetic tests.

FSC chief executive Richard Klipin said the issue of genetic testing was complex.

To ensure that insurance remains sustainable and fair for all customers, some insurers may ask customers to disclose known information about the results of their genetic tests, Kiplin said.

But, insurers were never asked to carry out genetic testing, he said.

CORRECTION: An earlier version of this article stated Southern Cross required a stand down period of three years before it would cover cancer related to the BRCA1 gene. However, the stand down period relates to prophylactic treatment. (Amended at 12.54pm on June 8, 2022)

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Kiwis should be 'very concerned' about genetic discrimination - Stuff

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