Source: New Zealand Privacy Commissioner – Blog
By Michael Webster, Privacy Commissioner. This article was first published in The Post.
OPINION: Should you have to disclose to your insurance company if you’ve taken a genetic test and learnt you have the gene for a medical condition? Should they be able to require you to test?
Without adequate safeguards, a person’s genetic test could be used by an insurer to assume things about them and their whānau, including future children. This could affect insurance cover for people before they’re even born.
If insurance companies require predictive testing to be done before they insure an individual, the results could show a greater risk of a condition developing later in life, but that condition may never actually develop.
But the risk factor means people could be refused cover, or subject to exclusions or higher premiums. This risk could also result in fewer people getting tested or participating in genetic trials, leading to poorer health outcomes.
You might say, for some types of insurance, I already need to disclose a pre-existing medical condition anyway, so what’s the issue? Genetic information is not just highly sensitive personal information about you. It is you. But it also reveals information about people who are related to you – past, present and future.
There is a big difference between disclosing your own personal medical history and disclosing the information of family and relatives for insurance purposes.
What’s more, a person’s medical history shows specific current and past diagnoses and treatments based on assessments by health professionals. Compare this to predictive testing which can tell an insurer what conditions a person may have, but also what their likelihood of developing a condition in the future may be.
Clearly, protections need to be put in place to empower consumer choice and to prevent discrimination in insurance cover based on a person’s predictive genetic information.
The key point relating to privacy and human rights is, it’s the choice of the individual to have this testing done and to share any information it reveals as they choose. They will, hopefully, have made an informed decision to be tested in consultation with a health professional.
The collection, use, disclosure and storage of genetic information are all subject to the Privacy Act. But the act cannot stop insurers from requiring genetic tests are taken or disclosed as a condition of their insurance cover.
Most OECD countries have protections against genetic discrimination; in New Zealand, there have been submissions made to Parliament and recommended changes to the Contracts of Insurance Bill.
I support adding specific targeted protections to manage the privacy risks of using genetic tests in the insurance context. This includes prohibiting insurance companies from requiring an individual to take a genetic test or disclose genetic test results.
There is also merit in exploring amendments to the Privacy Act or stand-alone legislation to better protect against genetic discrimination while providing the safe privacy enhancing use of genetic testing, which could help benefit New Zealanders.
Emerging technologies like genetic testing have great potential and my office supports their use when it’s done safely and in a way that ensures adequate protection of personal privacy.
Predictive genetic testing clearly has a place in New Zealand’s future, but this should be balanced with the right safeguards protecting individual choice about whether to be genetically tested or not.
