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December 4, 2017

Privacy Commissioner of Canada posts updated guidance on direct-to-consumer genetic testing and privacy

The Office of the Privacy Commissioner of Canada and the offices of the Information and Privacy Commissioners of Alberta and British Columbia have updated their joint guidance on direct-to-consumer genetic testing and privacy, as well as their policy statement on the collection, use and disclosure of genetic test results.

The updates to these documents reflect important changes introduced by the Genetic Non-Discrimination Act, which is designed to protect Canadians from the adverse impacts of genetic discrimination.

The policy statement notes: “(G)iven the adoption of Bill S-201, an organization that requires individuals to undergo genetic testing or provide existing genetic test results as a condition of providing a product or service or as a condition of employment in a federally regulated business would generally be in contravention of applicable privacy laws as well as the Genetic Non-Discrimination Act.”

The guidance for individuals on direct-to-consumer genetic tests explains some of the key privacy risks associated with these tests, informs individuals of their rights and encourages them to ask themselves a series of questions before buying one online.

It also explains that individuals are not obliged to disclose genetic test results to employers or insurance companies or any other business, nor should they feel any pressure to do so. If they wish to disclose results voluntarily, consent must be in writing, fully informed and freely given.

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