There's growing concern about genetic discrimination in New Zealand – and the lack of Government intervention in this fast-moving field.
As genetic testing becomes more accessible than ever before, there are calls for a line in the sand to be drawn – and a final answer to a question not yet canvassed: should insurers be able to use our genetic information?
Genetic discrimination is using someone's genetic information to discriminate against them – to treat them in a way that's different to someone else because we know something about their genetics.
Currently, life and health insurance companies in New Zealand are allowed to use this data in determining cover and premiums for applicants – something experts say anecdotal evidence suggest has led to increased premiums, or no cover at all.
While insurers may argue it's their right to know a person's medical history – researchers say genetics is, in fact, not a part of one's history, but a part of their future.
There are a lot of complexities in determining someone's genetic makeup and whether they are prone to getting a disease later in life.
There are also ways to mitigate and change the outcome of a patient's health once becoming privy to this information. For example, getting a mastectomy will drastically limit the chances of getting breast cancer, but there are fears an insurer may refuse cover based on a positive BRCA gene test regardless.
University of Otago law and bioethics lecturer Dr Jeanne Snelling says if people do have the test, and it's positive, they can do things to minimise development of the disease.
"They can undergo surveillance, get prophylactic preventative treatment and their risk could be quite similar to someone else's in the end. But, the insurance company is taking this absolutist approach saying that a positive test disqualifies you from obtaining life insurance cover."
There are doubts about whether an insurance company would have staff with the expertise on hand to dissect someone's genetic information.
University of Auckland's Faculty of Medical and Health Sciences Professor Andrew Shelling says it usually takes a cast of specialists to trawl through the data of an entire persons' genome.
"Good luck to the insurance company – if they can find something, let us know. Because we have an entire team of experts from the clinicians to the bioinformaticians to the geneticists – who sit in a multi-disciplinary clinic each week trying to discuss the outcomes of what they're looking at.
"Based on the increased complexity of genetic testing nowadays, there is also a risk of getting it wrong if you don't have the right expertise." He said.
There's also concern people will not opt for undergoing genetic testing purely based on the fact it could be used by insurers - and thus, miss out on the opportunity to decrease future health risks.
Despite the life-saving prevention available through genetic testing, experts say people avoid it and research because they are afraid of insurance discrimination.
This not only limits what a person can do to better their health in future - but stunts medical research, particularly in minority groups like Māori and Pasifika, whose genetics are an even greater enigma to researchers than Pakeha.
Professor Shelling says we know that Māori have been discriminated against for years – and this may be another form of it.
"We base a lot of our genetics on European DNA, so for our Māori and Pasific people we don't always know what their results mean in a clinical setting.
"We have an extra responsibility as genomic scientists to support Māori and Pasific getting genetic testing and make sure they don't get further discriminated against.
"In a lot of our research studies around New Zealand, we are trying to increase the number of Māori and Pasific participants.
He fears if they have any concerns about insurance, they'll turn away from being part of these studies.
It's a conflict Jane Tiller – an ethical, legal and social advisor for Public Health Genomics at Melbourne's Monash University - has battled for five years in Australia – where a moratorium's been put in place to try and curb the issue.
"Now, in Australia, you can get life insurance up to $500,000. If you try and take out more, you have to then disclose your genetic test results." she said.
She says the moratorium's a good step towards consumer protection – but it's a fraught approach.
"It goes up to certain financial limits and is only five years. So, we don't know what will happen in 2024 when it ends."
"We are still gathering data about how it's [the moratorium] working. We're remaining concerned about the lack of Government regulations on this issue. We would like to see a complete ban, like in Canada."
The moratorium is also self-regulated by the insurance industry.
"Self-regulation has been shown to be conflicted and problematic, both in Australia and New Zealand.
"There's very little transparency on how insurance companies use this data. Because this is self-regulated, there's a lot of questions around how decisions are made and what data is relied on.
The newly formed AGenDA (Against Genomic Discrimination Aotearoa) group, is lobbying for Government attention on this issue.
AGenDa's message is that genetic discrimination is not only a consumer protection issue, but a human rights issue.
They say it's not just about making sure insurers get the information they need to discriminate; it's about stopping them from discriminating altogether. It's about ensuring consumers can make decisions about healthcare and learn empowering information without fear of discrimination for themselves or their family members.
They say the sector has come to presume divulgence -- an expectation that's been born of our insurance industry over many years.
The Financial Services Council's Richard Kiplin says it's not something companies will ask for – but if a client has information, it's only fair that they disclose it.
"Within the New Zealand sector –organisation by organisation will make their own calls." he said.
"What's important for New Zealand consumers to understand is that this is a complex area, and life companies need to assess risk and they'll do that in an appropriate way.
"Genetic testing, at this point of time, is not a standard part of that - but that's obviously evolving and moving very fast.
"I think if people have had a genetic test and have information – then they know information that a life and health company would want to understand. And so that's a part of the disclosure process."
Kiplin says he's open to working with researchers and other parties in future to solidify guidelines around genetic testing.
"We have a robust committee structure that's been looking at some of these issues and reviewing guidelines.
"The sector is never static, there's always stuff you can change and this is one of the big areas of the future." He said.
AGenDA is also concerned at the lack of Government intervention.
The Minister of Commerce and Consumer Affairs David Clark points towards the Ministry of Business, Innovation and Employment's Insurance Law Review.
"Insurer use of genetic testing results is one of many issues raised with MBIE during the course of the review, but it was not highlighted as a significant issue in the submissions (it was mentioned in two out of around 500 submissions received)." He said.
Clark mirrors the industry's openness to working with experts to understand the situation better.
"I'm told, the industry have previously told my officials they are not seeing high levels of genetic testing, but I am open to further briefings on the matter."
The MBIE review was prompted to ensure New Zealand's insurance contract law is facilitating insurance markets that work well and enable individuals and businesses to effectively protect themselves against risk.
In November 2019 the Government agreed to the reform – which includes making sure insurers ask consumers the right questions, the requirement for policies to be written and presented clearly, strengthening protection for consumers against unfair terms and extending powers to the Financial Markets Authority to monitor and enforce compliance.
Next steps for the review include release of an exposure draft Bill for consultation in late-2021.
Genetic testing has been described as a "quantum leap for healthcare". A new kind of apparatus we can use to decode our future health.
In July 2021, the World Health Organization (WHO) provided the first global recommendations to help establish human genome editing as a tool for public health, with an emphasis on safety, effectiveness and ethics.
While their concerns are mainly based around the use of genetics to edit our DNA - WHO director-general Dr Tedros Adhanom Ghebreyesu recognised genome editing and testing as a potential to advance our ability to treat and cure disease.
"But the full impact will only be realized if we deploy it for the benefit of all people, instead of fueling more health inequity between and within countries," he said.
In September, the WHO recommended DNA testing as a first-choice screening method for cervical cancer prevention.
It recognised DNA-based testing for human papillomavirus (HPV) has been shown to be more effective than today's commonly used screening methods aimed at detecting and preventing cervical cancer, a major cause of death among women worldwide.
As genetic testing becomes more mainstream, as the technologies mature, and as tests become more precise and affordable - it evolves from being a niche offering to becoming illuminated on healthcare's centre stage.
And while genetic testing is applauded for its potential to become a part of our everyday health toolbox – one question remains: should insurers be able to use our genetic information?