Data Protection Report - Norton Rose Fulbright

The Canadian Parliament recently passed Bill S-201, the Genetic Non-Discrimination Act, which protects individuals from having to disclose information related to genetic testing and test results. Specifically, the Act prohibits any person from requiring an individual to undergo a genetic test or disclose the results of a genetic test as a condition of providing goods or services to, entering into or continuing a contract or agreement with, or offering specific conditions in a contract or agreement with, the individual. Contravention of the Act is punishable by significant fines and even potential imprisonment. There are express exceptions for health care practitioners who are providing health services to patients and researchers who are collecting information from participants in medical, pharmaceutical or scientific research.

In addition, the Act amends the Canadian Human Rights Act to prohibit discrimination on the ground of genetic characteristics. The Act also amends the Canada Labour Code to protect employees from being required to undergo or to disclose the results of a genetic test, and provides employees with other protections related to genetic testing and test results.

Parliamentary debate concerning Bill S-201 focused on the potential misuse of genetic testing results by employers and insurance companies with representatives of the insurance industry having expressed concerned about the asymmetry in information available to insurers and the insured.

The bill was passed, despite concerns expressed by the Prime Minister that certain elements were perceived to be an unconstitutional intrusion on the provincial jurisdiction over health care. The Act is now awaiting royal assent.

Our Take

The Genetic Non-Discrimination Act, once it receives royal assent, will prevent Canadians from having to undergo, or disclose the results of, genetic testing to their insurers, or others. Supporters of the new legislation believe that this will remove perceived obstacles to genetic testing such as fear that the results of that testing will be used to discriminate against the patients. Canada’s legislative initiative on genetic testing is similar to the U.S. Genetic Information Nondiscrimination Act. Restrictions on the use of genetic test results have also been adopted in certain European jurisdictions, including France. The Association of British Insurers and government in the U.K. adopted a Concordat and voluntary moratorium limiting the use of genetic testing by insurers. Other countries have yet to address the issue. The evolving global quilt of responses to this issue indicates that a global consensus has yet to emerge.