If Canada does not act to protect genetic data, we could see the rise of genetic discrimination

Earlier this month the Senate Human Rights Committee gutted a bill calling for a law against genetic discrimination in Canada. Instead of protecting Canadians from having their personal genetic information used against them, the bill now simply provides a definition of “disclose” and “genetic test,” and protects no one.

More than 26,000 genetic tests are now available to the public. Many do-it-yourself tests, like those offered by mail from the California-based company 23andMe, cost less than $200. As more Canadians elect to find out what their genetic blueprints say about them, Canada needs to protect their genetic information from being misused.

According to Senator James Cowan, who tabled the bill, most other Western democratic countries have laws like this already. In 2003, the United Nations’ scientific and cultural organization adopted the International Declaration on Human Genetic Data, which aims to prevent personal genetic information from being used against an individual or group.

Why isn’t Canada on board? The insurance industry opposed the original bill banning genetic discrimination, Senator Cowan said in the Senate.

Really? Should business interests be the reason this principle fails to become law?

Many Canadians who are sick and in need of treatment could be helped by genetic testing.

But with no law to protect them, they might decide not to get tested.

They might fear repercussions from their insurance company or employers down the road, if their tests indicate they carry genes that predispose them to a medical condition or disease.

Canadians may well decide not to get tested if there’s a risk their insurance premiums will go up, or that they will be denied insurance.

Ironically, when a patient is able to catch a genetic disease early through testing, they’re often able to take preventative measures that reduce the potential cost of their care for everyone involved ­— including themselves, the government and their insurers.

Genetic discrimination could come from anywhere, not just insurance companies. Should a hospital be allowed to deny a surgeon a job if he or she were found to be at risk for tremor-causing Parkinson’s disease? Would it be OK if a private school, whose reputation depends on its students’ test scores, rejected a student who carried a gene related to dyslexia?

We should not leave these decisions for Canadian organizations to make for themselves. As researchers discover more about the complicated human blueprint, Canadians will need increasing protection from discrimination that might arise from that information.

Stephanie Orford , Metro

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