Health professionals say insurance companies are using genetic testing results to discriminate against people, and new laws are urgently needed.
A New Zealand Medical Journal article published on Friday covers a survey of 23 New Zealand health professionals about the use of genetic test results in insurance underwriting.
The authors, including members of Against Genetic Discrimination Aotearoa, aimed to document their experiences and concerns about the potential misuse of the information.
Many countries have banned or restricted genetic test results from being used in insurance, but Aotearoa has not.
"Genetic discrimination in insurance is a significant clinical, research and consumer issue," the article said.
"Recently, the Australian life insurance industry introduced a partial moratorium on the use of genetic test results. However, in Aotearoa New Zealand, both life and health insurers can still use genetic results legally to discriminate against applicants."
More than half of the health professionals surveyed had observed patients delaying genetic testing due to concerns about insurance, with four participants reporting some patients had refused to genetic testing sometimes for the same reason.
"Patients decline testing that can potentially save lives in the wider family, around concerns for insurance coverage. Because genetic testing in an affected individual is needed to provide predictive testing to unaffected relatives, this concern is detrimental to the health of the wider family," one health professional said.
More than half of respondents reported having patients who have been denied insurance policies or cover for certain treatments, or had their premiums increased due to their genetic test results.
One participant said they were contacted by people who told them their insurance company was asking for a genetic test before they could get a policy.
'Far stronger regulatory protections are required'
The majority of surveyed health professionals agreed New Zealand should introduce a formal agreement between the government and the insurance industry against genetic discrimination in insurance.
"Our findings highlight the urgency of the problem of genetic discrimination occurring in the New Zealand insurance industry, and suggest that far stronger regulatory protections are required."
The survey also found health professionals self-identified deficits in their understanding and lack of training about the potential implications of genetic testing.
"New Zealand health professionals' limited awareness in this area may be exacerbated by the industry's lack of transparency and reluctance to share any information about their internal policies about use of genetic test results."
Most of the participants preferred the practice to be regulated through legally enforceable rules rather than self-regulation.
"Our findings demonstrate evidence of New Zealand consumers being deterred from clinical genetic testing because of genetic fears, and concerns from health professionals about industry self-regulation.
"New Zealand health professionals strongly believe government regulation of genetic discrimination through national legislation is required. In order for the many benefits of genomic medicine to be realised in New Zealand, far stronger consumer protections against genetic discrimination occurring in the insurance industry are required."
The authors - Harry Fraser, Kimberley Gamet, Sally Jackson, Andrew Neil Shelling, Paul Lacaze and Jane Tiller - recommended further research to focus on documenting experiences and views about this issue directly from the public.
The Financial Services Council says it regularly reviews its stance and industry guidelines on genetic testing to ensure they reflect best practice globally.
It was important insurers understood a customer's risk profile as part of the underwriting process, it said.
"Some insurers may ask customers to disclose known information about the results of their genetic tests. This is consistent with asking customers other questions about their risk profile - for example, their family history.
"Genetic testing is not something that any of our members ask their customers to carry out.
"Overall, FSC believes a fair position is one that balances the interests of consumers and the
medical community to advance genetic science, and which manages financial risks to insurers and