Knowing our genetic risk of diseases such as BRCA-related breast cancer can be lifesaving, but New Zealand insurance companies can use this knowledge to discriminate against us.

BCAC has joined Against Genetic Discrimination Aotearoa (AGenDA), a group of doctors, researchers, lawyers, Māori, Pasifika, medical charities and patient groups to fight this discrimination.

Mutations in the BRCA1/2 gene can run in families, leading to a high likelihood of developing breast, ovarian or prostate cancer at a young age. Genetic testing can identify those at risk and allow early screening, detection or prophylactic surgery. BRCA breast cancers are more likely to be triple-negative and tend to be aggressive and hard to treat, making early intervention all the more important. As researchers uncover a wider range of disease-related gene mutations our ability to understand and successfully treat conditions with targeted therapies is increasing.

However, New Zealand insurance companies are legally entitled to ask for any genetic testing information a customer has and use this to load health and life insurance premiums or refuse cover. Non-disclosure of test results can void policy cover. This sets Aotearoa apart from other countries that have established legislation protecting against genetic discrimination. Canada has a complete legal ban on any use of genetic test results in insurance, employment and all other areas of life. The UK has also established good protection and Australia has adopted a similar moratorium.

Until Aotearoa adopts legal protection, people at risk of genetic conditions may avoid genetic testing or involvement in genetic research through fear of punishment. This will disincentivise people from being proactive in discovering and managing their risk, leading to serious health impacts and slowing progress in genomic medicine.

BCAC fully supports AGenDA’s call for the New Zealand Government to establish legislation protecting us all from being medically and financially disadvantaged by genetic discrimination.

For more detail read this NZ Medical Journal editorial

19th March 2022

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