For years, Professor Andrew Shelling has been lobbying for insurers to be banned from using genetic test results to determine cover, but his campaign took a personal turn last month when his own daughter experienced a cancer scare.

Shelling, a director of Auckland University’s Centre for Cancer Research, says when his 30-year-old daughter found a lump in her breast she faced a dilemma: should she take a genetic test, knowing it could result in her paying higher insurance premiums or being refused coverage outright?

He says it’s a stark reminder that New Zealanders have no protection against genetic discrimination when it comes to insurance, unlike countries such as Canada, the United States and Britain.

“It makes me angry that people might say no to a genetic test purely because they’re worried about insurance cover. We’re so far behind the rest of the world on this,” he says. “I was pretty fired up about this issue beforehand and this has certainly given me another wind up.

“[It’s] the thought of our lack of protection in New Zealand impacting my family. If it’s impacted my family, how many more families is it affecting? It’s a real, live problem and we need to take it seriously.”

Currently, insurers cannot require people to take a genetic test before determining coverage, but applicants must disclose the results of any previous test. This could result in higher premiums or denial of cover.

Shelling’s lobby group Against Genetic Discrimination Aotearoa (AGenDA) wants to replicate overseas laws which ban insurers from using the tests. He says New Zealand is the only country in the OECD which has no protection against genetic discrimination.

To achieve that, AGenDA wants to insert clauses into the proposed Contracts of Insurance Bill, which is before a parliamentary select committee.

A joint legal opinion for AGenDA from Michael Heron KC and Paul Rishworth KC concludes amending the bill is a “simple and effective approach”.

“This bill is not designed to be the vehicle for a comprehensive solution to the issue, but it represents a unique and timely opportunity to deal with one of the more pressing aspects, upon which New Zealand regrettably lags the world,” they say.

Unintended consequences

However, the Financial Services Council (FSC), whose members include large health and life insurers, says the Contracts of Insurance Bill is not the right vehicle for change and shoehorning in clauses about genetic testing risks unintended consequences for consumers.

The FSC acknowledges genetic testing is a “particularly complex and emotive issue”, saying it has arranged a working group of stakeholders to discuss the topic, including insurers, clinical experts, academic researchers and consumer advocates. “I’d say that is an urgent piece of work and we’ve seen the FSC bringing people together and from that agreeing on change, if any is needed,” FSC acting chief executive Haydee Stroud says.

“From my experience, change takes time if you do it right. If you do it wrong, change doesn’t take time.” Shelling says cases such as his daughter’s show protections against genetic discrimination are needed now.

We know that about 10% to 30% of individuals will decline life-saving genetic testing in response to the idea that it’s going to affect their ability to get insurance in the future,” he says.

“It means a lot of New Zealanders aren’t getting the benefit of genomic testing. This testing has the ability to improve patient outcomes in a wide range of different diseases, reducing the long-term burden on the healthcare system.

“It’s going to transform New Zealand’s healthcare system. It means people can make decisions much earlier in their lives. You’re pre-armed and pre-warned about things that are likely to happen.”

Shelling says Australia tried industry-led voluntary initiatives without success. He favours a Canadian model, where protections against genetic discrimination were set down in legislation in 2017 and are upheld by a regulatory body.

“There hasn’t been the doom and gloom that insurers in Canada were predicting and we think it would be the same here,” he says.

Dr Robert Young, a physician at Auckland City Hospital who has worked as a consultant to the insurance industry, says a total ban lacks flexibility, adding “the advances in genetic research are travelling so quickly that legislation is likely to result in unintended consequences that may, in fact, be adverse for patient care”.

Young says the insurance industry is focused on a handful of genetic tests for specific conditions such as breast, ovary, stomach, bowel and lung cancer.

Genetic underclass

Young told a select committee discussion on the Contracts of Insurance Bill that one solution could be to have a list of conditions such as these which are not subject to antidiscrimination provisions.

AGenDA rejects the suggestion.

“You don’t say ‘we’ll protect a portion of the population and the rest of you can be hung out to dry’. That’s not protection against discrimination… that undermines the entire purpose of protective legislation and regulations,” spokeswoman Dr Jane Tiller says.

Barrister Laura (now Justice) O’Gorman KC said in a 2022 legal opinion that there was a moral case for addressing genetic discrimination.

It is unfair to discriminate against someone based on such an immutable, personal and uncontrollable trait as one’s genetic make-up in the same way it is unjust to discriminate based on race or gender,” she wrote.

“Discrimination could lead to a so-called genetic underclass – a group of people unable to access insurance or other parts of society because of their genes.”

Shelling says it’s a grim prospect that New Zealand should strive to avoid. And on a personal note, he revealed his daughter’s health scare proved to be a false alarm, although he still recommends undergoing genetic testing to find out if she is predisposed to breast cancer.

“She’s got the all-clear,” he says. “Hopefully she’ll go ahead with genetic testing anyway, and not let concerns about what it might do to her insurance deter her.” ■