AGenDA calls for the end of genetic discrimination in New Zealand

Breast Cancer Foundation NZ has joined with patient groups to call for an end to the discrimination currently preventing Kiwis from accessing genetic testing.

In an editorial in the New Zealand Medical Journal on 11 March the collaborative alliance AGenDA wrote insurance companies should be banned from asking for, and using genetic test results in policy decisions.

Women with the BRCA1/2 gene mutation are at an increased risk of getting breast cancer at young age, but if picked up early, this can dramatically reduce the risk of the cancer ever developing.

But New Zealanders at risk of genetic conditions are not getting tested because they are scared the results will be used to increase premiums, or even deny cover in their applications for health and life insurance.

Insurance companies can ask applicants if they’ve taken a genetic test and can then use the results to inform their policy decisions. Failure to disclose test results, or the fact a test was taken when asked, could lead to the rejection of any policy claims made.

The editorial’s lead author, Professor Andrew Shelling says: “What we hear from clinicians, and genetic counsellors is that patients are declining genetic medical testing after being told they are obliged to provide insurance companies with the results.

“We are not sure how many are being affected… but anecdotes suggest it is an ongoing and significant problem.”

It is also enabling greater levels of inequity for Māori, who have one of the highest breast cancer rates in the world.

Professor Shelling, who is the head of the University of Auckland’s Medical Genetics Research Group, adds: “But this should not put women off getting tested for the BRCA 1/2 gene variant which can lead to prevention and treatments that are life-changing.”

Insurance companies think people will try and use the information from their genetic tests to “game the system”, and purchase more life insurance, but Professor Shelling says this is not the case at all.

Women diagnosed with a BRCA1/2 variant tend to be vigilant and proactive, more likely to be screened early and seek preventive measures like a mastectomy to reduce their risks of developing or dying from breast cancer.

AGenDA is calling for a law change so New Zealanders won’t have to face this discrimination any longer.

Not only is it impacting access to treatments, it is also hampering recruitment into genomic research studies.

There is still much to be understood about genetic testing, and it is only likely to become more widespread in diagnosing a variety of diseases.

Professor Shelling would like New Zealand to follow suit other countries across the globe, like Canada which bans insurance companies using test results, and Australia, which introduced a moratorium in 2019.

“We had no idea how completely out of step we were compared to the rest of the world,” says Professor Shelling.