Genetic Privacy and Bill S-201

Posted By Jey Kumarasamy

An individual’s genetic information can be used for diagnosing medical conditions, measuring the probability of developing or transmitting a genetic disorder, and personalizing treatment. Given the increase in genetic testing, the collection and use of genetic information continues to grow in prevalence.

Aside from the more apparent medical and research purposes, genetic information could also be used to make decisions related to insurance coverage or employment. Insurance underwriting requires the disclosure of relevant information in order for the insurer to properly assess risk.

The rise in genetic testing has prompted privacy concerns. Arguments for the right to a reasonable expectation of genetic privacy include the right not to have others know, and the right “not to know” about oneself. Proponents for allowing the use of genetic information by insurers argue that it is no different from other vital classification tools used for risk assessment, and that it allows for fair market prices.

Legal limitations

Legal responses to these concerns have varied. The US, in 2008, prohibited the use of genetic information for making employment or health insurance underwriting decisions. In Germany, genetic information may only be requested for life insurance policies that exceed a specified amount. Similarly, there is now a voluntary moratorium in the UK, set to expire in 2017, under which genetic information may only be used for life insurance policies over a specified limit (£500,000, or £300,000 for critical illness policies), and only if the genetic test and illness have been approved by an independent government committee.

At present, Canada lacks any similar federal prohibition or moratorium. The Canadian Life and Health Insurance Association (CLHIA) has stated that although an insurer would not require genetic testing, the insurer may request disclosure of genetic information from previously completed tests. This may soon change due to Bill S-201, An Act to prohibit and prevent genetic discrimination, which was introduced in October 2013. The Bill specifically addresses the use and disclosure of genetic information.

Bill S-201

Once in force, the Bill would prohibit anyone from requiring an individual to undergo a genetic test as a prerequisite to providing goods or services, or entering/continuing a contract (in whole or in part). Similarly, it would also prohibit requirements to disclose results from previous genetic tests. Under this Bill, therefore, employees or insurance underwriters would not be permitted to demand genetic information, save for one exception: an insurer may require the disclosure of genetic tests results for policies that exceed $1,000,000 or that pay a benefit of more than $75,000 per annum, if it is expressly permitted in an applicable provincial statute. Note that this still would not allow insurers to require new genetic tests – it would only apply to previous tests. Additionally, these prohibitions would not apply to medical professionals and researchers if it is for the purpose of medical care or research.

If convicted on indictment for contravening one of these prohibitions, one could face a fine of up to $1 million and/or imprisonment for a term not exceeding five years (or $300,000 and/or twelve months for a summary conviction).

The Bill also amends the Canada Labour Code and the Canadian Human Rights Act to expressly include genetic testing and genetic information.


As access to personal genetic information continues to improve, protection for genetic privacy proves to be a growing and pressing concern. While Bill S-201 would address many of the commonly raised issues regarding the use and disclosure of genetic information, it remains to be seen whether these provisions will become law, and if they provide the optimal solution.


If you are interested in issues related to genetic privacy, be sure to attend our upcoming event, “Patenting Genetic Materials: Biotechnology and Intellectual Property Law

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