This resource was developed with the Office of the Privacy Commissioner of Canada and Office of the Information and Privacy Commissioner for British Columbia.
As direct-to-consumer genetic tests become increasingly available, particularly over the Internet, it is important to understand their privacy risks. This document 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.
IMPORTANT NOTE: Readers should note that on May 4, 2017, Bill S-201, the Genetic Non-Discrimination Act received Royal Assent. Canadian law now prohibits any person from requiring an individual to undergo a genetic test or to disclose the existing results of genetic tests. Essentially, the Genetic Non-Discrimination Act puts you in control of your personal information. It is prohibited for any person to collect, use, or disclose your genetic test results without your written consent. This means that you are entitled to obtain a genetic test without having to consent to further disclosures that are not directly related to providing you with the service that you want. It also means that you are in no way obliged to disclose your genetic test results to your employer or insurance company or any other business, nor should you feel any pressure to do so. If, on the other hand, you wish to disclose your results voluntarily, your consent must be in writing, fully informed and freely given.