Kiwis should be ‘very concerned’ about genetic differentiation

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

While the search for Jean potentially saved his life, it led to challenges with insurance that left him in a difficult position.

Insurance companies were concerned that the BRCA1 gene put her at higher risk, and had to be on a premium health insurance plan to cover her, she said.

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

Read more:
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After returning to New Zealand, Greenhill struggled to find an insurance company willing to cover Jean. Her insurance broker told her that most insurers would exclude any treatment related to genes, or would only cover her after prophylactic surgery.

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

Abigail Dougherty/Stuff

Annik Greenhill is a BRCA1 carrier and as a result has been affected by ‘genetic differentiation’.

“I thought the fact that I know I am a carrier should in some way reduce my overall exposure to an insurance company because I am in an early detection program I was a carrier regardless of whether I knew it Or not.”

Ah-Lynn Rainer, chief executive officer of the Breast Cancer Foundation NZ, said insurance discrimination around the BRCA gene was a serious problem, and a change in the law was needed.

“As long as New Zealand insurers can ask about genetic test results, people with the BRCA gene will be discriminated against even if they don’t have breast cancer.”

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

However, she had to be on the second largest plan, and would be eligible for BRCA-related cover only after a stand-down period of three years.

He said health insurance costs the family $580 a month, which is a “significant expense.”

Southern Cross confirmed that she was excluded for three years for monitoring and prophylactic treatment for a BRCA gene abnormality because of the gene.

She also applied for an additional chemotherapy cover of $300,000 per year, but the limit was $60,000.

Southern Cross said that while Greenhill would not be excluded from the chemo 300 plan, it would have to meet terms and conditions, which included possible exclusions for family history.

Rosa Woods/Stuff

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

While the 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 had no regrets about her decision to get tested, but she was concerned that others in her position would be discouraged because of the genetic discrimination she faced.

It’s a puzzle that Georgia Eve, a 22-year-old social support worker, is grappling with.

She was planning to donate one of her eggs to a breeding organization, until she heard that it might lead to genetic discrimination from insurers.

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

Eve said that despite her desire to donate eggs for some time, the potential for genetic differentiation in later life was a “dealbreaker.”

“It is a bit of a risk to take. I am someone who wants to travel, so I am concerned about access to travel insurance later in life. I am thinking it would be better not to do so,” she said .

Eve said insurers’ positions on genetic testing were affecting wider public health.

“If people are being asked by insurance companies not to undergo genetic testing, they are missing out on the opportunity to lead a healthy life. But as it stands, many people are choosing not to know. ,

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

Abigail Dougherty/Stuff

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

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

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

In 2017, Canada banned the use of genetic test results to discriminate, including insurance and employment.

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

New Zealand insurance companies have not followed suit.

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

Schelling said 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, Schelling said.

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

“For people who are at increased risk of genetic conditions, choosing not to get tested can have serious health implications.”

While there was no data for New Zealand, he believed it would be similar to the rest of the world, with 10% to 30% of the population. decreasing test,

“This is an extraordinary number of people and is likely to have a significant impact on those at risk for serious genetic disease.”

Southern Cross chief sales and marketing officer Kerry Boale said it has not added a pre-existing condition exclusion resulting from a genetic abnormality, and will generally not increase premiums or refuse to issue a policy based on that information. .

However, it may exclude any consultation, further testing 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 had applied exclusions to its policy as a result of genetic abnormalities.

Three other insurers said they were members of the Financial Services Council (FSC) and complied with the council’s code of conduct and guidelines on genetic testing.

FSC chief executive Richard Klippin said the issue of genetic testing was “complicated”.

“To ensure that insurance remains sustainable and fair to 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 do genetic testing, he said.

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