It's discrimination by predisposition - making health insurance harder to get for those who need it most.
A collaborative alliance of clinicians, patients and lawyers are now calling for a ban on health insurers using people's genomic information to underwrite insurance policies and premiums.
Knowing her genetic history has been life-saving for Siobhan Conroy.
"My father died when I was three years old and it wasn't when I was 25 until my family went through genetic testing, so it was when they looked at my father's autopsy they saw what had gone on for him," Conroy says.
Conroy inherited her father's cancer syndrome.
"With us knowing that we have this genetic syndrome, it undoubtedly extended our lives - we get the right treatment at the right time," she said.
Genetic testing can lead to early screening, testing and intervention. It's a no brainer - until a health insurer is asking for those results.
"What we are seeing is insurance companies are using this to set premiums or turn down insurance policies," the head of Medical Genetics at Auckland University Professor Andrew Shelling says.
A New Zealand Medical Journal report says it is legal.
According to a new article in the New Zealand Medical Journal, health insurers are legally allowed to use people's genomic results when underwriting decisions, and can discriminate.
"We're opposed to it, we'd like a ban on the use of genetic testing for the assessment of insurance premiums and policies," Prof Shelling says.
Although insurance providers cannot require people to undergo genetic testing, they can ask for and use previous test results. If an applicant doesn’t disclose results, or that a test was taken, the insurer could void the policy for non-disclosure.
Several countries have laws to safeguard people from genomic discrimination by insurers and workplaces, but New Zealand doesn't.
"I think its incredibly unfair that they can discriminate based on our genetic status," Conroy says.
Meaning those who are proactive about their health face a new risk.
