New genetic non-discrimination law will promote privacy and human rights in Canada

May 5, 2017 – Ottawa, Ontario – Canadian Human Rights Commission (CHRC) and the Office of the Privacy Commissioner of Canada (OPC)

The Privacy Commissioner of Canada and the Chief Commissioner of the Canadian Human Rights Commission are welcoming the coming into force of the Genetic Non-Discrimination Act, as an important step for privacy and human rights in Canada.

The Act, which received Royal Assent on May 4th, now prohibits genetic discrimination across Canada. It bars any person from requiring individuals to undergo a genetic test or disclose the results of a genetic test as a condition of providing goods or services, or entering into a contract.

“Taking a test that could help save your life shouldn’t have to be a calculated risk,” said Marie-Claude Landry, Chief Commissioner of the Canadian Human Rights Commission. “Every Canadian deserves these important protections so that we can all live without fear of our genetic information one day being used against us.”

Privacy Commissioner Daniel Therrien said the issue illustrates the increasingly important connection between human rights and privacy.

“Unfortunately, the collection of personal information, including sensitive genetic information, can result in discrimination down the road.  In a time of unprecedented demand for personal data, this new law adopted by Parliament is a critically important development for privacy protection,” he said.

Both Commissioners acknowledge that the Government has stated it may refer the law to the Supreme Court of Canada for its opinion on the law’s constitutionality. In the meantime, the Genetic Non-Discrimination Act remains in place and represents the current law on this important public policy issue.

Commissioner Therrien says he expects organizations subject to Canada’s federal private sector privacy law to re-examine their practices related to genetic tests and bring them in line with the new law. In light of Parliament’s passage of S-201, organizations that require genetic test results as a condition of providing a good or service will also generally be considered in contravention of the Personal Information Protection and Electronic Documents Act (PIPEDA). 

Quick Facts

  • As Canada’s human rights watchdog, the Canadian Human Rights Commission operates independently from government and is responsible for holding the Government of Canada to account on matters related to human rights. The Commission administers the Canadian Human Rights Act, which protects people in Canada from discrimination based on grounds such as race, sex and disability. The last time Parliament added a new ground to the Canadian Human Rights Act was in 1996 when it added “sexual orientation” to the list of grounds.
  • The Privacy Commissioner of Canada is mandated by Parliament to act as an ombudsman and guardian of privacy in Canada. The Commissioner enforces two laws for the protection of personal information: the Privacy Act, which applies to the federal public sector; and the Personal Information Protection and Electronic Documents Act (PIPEDA), Canada’s federal private sector privacy law.
  • Over the past several years, the Office of the Privacy Commissioner of Canada has been examining the privacy implications arising from the collection and use of genetic information as one of its strategic privacy priorities

Quotes

“Taking a test that could help save your life shouldn’t have to be a calculated risk. Every Canadian deserves these important protections so that we can all live without fear of our genetic information one day being used against us.”

-    Marie-Claude Landry, Chief Commissioner, Canadian Human Rights Commission

“Unfortunately, the collection of personal information, including sensitive genetic information, can result in discrimination down the road.  In a time of unprecedented demand for personal data, this new law adopted by Parliament is a critically important development for privacy protection.” 

-    Daniel Therrien, Privacy Commissioner of Canada

 

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Media Contacts

Canadian Human Rights Commission:
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Office of the Privacy Commissioner of Canada:
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Telephone: 819-819-994-5689