Genomic discrimination and New Zealand insurance – or, how what you don’t know can hurt you
By Susanne, Hauora Health Privacy Working Group
The Privacy Foundation has joined the AGenDA (Against Genomic Discrimination in Aotearoa) coalition, which seeks to limit insurance companies’ access to personal genetic information. AGenDA is a New Zealand coalition of individuals and organisations who want to ensure that people can get tested and access their genetic information, and in particular any indications of possible health risks, without consequence.
Background
Currently New Zealand health insurers require that if someone has had a genetic test related to health risks, they must provide the results to the insurer or face penalties for withholding relevant information. Insurers can use someone’s genetic information to restrict, deny or charge additional costs for insurance – even though the individual has not developed the condition and may never develop the condition. This information can be shared with other insurers, without the knowledge or consent of the individual involved. This practice is considered to be genetic discrimination. Note that the broader term “genomics” is now used to encompass how genes interact with each other, as well as the characteristics of individual genes.
New Zealand is one of the last developed countries in the world which does not have consumer safeguards around this issue. There is evidence that Kiwis have foregone potentially beneficial genetic testing due to the risk of results being used against them. This means that opportunities are missed to both identify health risks, and take action to treat them early. As a result, cancer and other illnesses may be detected later, with worse chances for treatment and recovery. Awareness of a genetic health condition may impact couples’ choices to have children, and for such children to have health problems identified and treated sometimes even before birth.
If insurance companies’ ability to access this information and use it against policy holders was removed, it might actually benefit them as well as consumers and the health system; because if someone can learn about their genetic risks, they have better ability to detect and treat a health condition early. Other countries including the UK, Canada, the US and Australia have all placed limitations on insurance companies regarding genetic information.
For more information, here is a 2022 editorial from the New Zealand Medical Journal, and an interview with AGenDA leaders Fay Sowerby and Andrew Snelling on RNZ’s Nine to Noon programme.
Proposed legislation
AGenDA made a submission about these concerns in June 2024 to the Finance and Expenditure Committee, during consideration of the Contracts of Insurance Bill. The bill was initially intended as a general tidy up of insurance law, and didn’t include any specific focus on genetic/genomic health risk issues. However when this issue was raised, there was general interest among committee members, and advice was sought from the Privacy Commissioner, who made a submission.
In September 2024, the Committee’s report back to Parliament on the bill included a recommendation that the Financial Markets Authority (FMA) publish regulations over insurance companies to address this issue. The bill is now before Parliament for a second reading, where MPs can consider the committee recommendations, as well as alternatives. AGenDA continue to advocate for a complete insurance industry ban against any requirements to disclose genetic information.
If the final version of the bill contains the regulations proposed by the committee, the Privacy Foundation has asked to work with AGenDA to help shape these to good effect.