Appearance before the Senate Standing Committee on Human Rights on Bill S-201, An Act to Prohibit and Prevent Genetic Discrimination, The Genetic Non-Discrimination Act

October 2, 2014
Ottawa, Ontario

Opening Statement by Daniel Therrien
Privacy Commissioner of Canada

(Check against delivery)

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Good morning Mister Chair and Members of the Committee.

Thank you very much for the invitation to present our views on Bill S-201, the Genetic Non-Discrimination Act.

With me today are Patricia Kosseim, Senior General Counsel and Carman Baggaley, Senior Policy Analyst. 

First, I would like to thank the Honourable Senator Cowan for introducing this Bill which addresses a very important topic. The protection of genetic information has been one of our Office’s policy priorities for the last few years. In July of this year, we released a “Statement on the Use of Genetic Test Results by Life and Health Insurance Companies.”

Our Statement urges the life and health insurance industry to:

“expand its voluntary moratorium, that currently calls on its members to refrain from asking applicants to undergo genetic testing, to also refrain from requesting access to existing genetic test results until such time as they can be shown to be demonstrably necessary and effective.”

Turning to S-201, the overall objective of the Bill is consistent with our Statement – it recognizes that genetic tests reveal highly sensitive information, which merits special protection – but it goes much further.  Whereas we have called on the insurance industry to refrain from asking for access to existing test results until such time as they can be shown to be demonstrably necessary and effective for underwriting purposes, Bill S-201 would create a statutory prohibition.

The Bill proposes to prohibit 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, or entering into a contract with, the individual. This would apply to a broad range of organizations, including the life and health insurance industry.

As we note in our Statement, individuals may undergo genetic testing for many reasons. Testing may be for valid, clinically-established medical purposes, but people also get tested for research or over the Internet to establish paternity, for family planning purposes, to discover more about their ancestry, or out of curiosity. 

The industry believes it needs access to all existing genetic test results to ensure a level playing field in terms of knowledge between both parties of a good faith contract.  However, for the vast majority of genetic tests, the ability to predict health and life outcomes with any reasonable degree of certainty is still relatively low at this time. Even in the case of rare monogenic disorders for which genetic test results may be highly probative, the economic impact of banning industry access to this smaller subset of cases is currently the subject of healthy debate among qualified actuarial experts.

Bill S-201 recognizes the overriding societal benefits of protecting applicants’ right to privacy and of providing all persons with insurance coverage regardless of their genetic heritage.  We are also encouraged by the Government’s commitment in the Speech from the Throne to prevent employers and insurance companies from discriminating against Canadians on the basis of genetic test results.

I welcome the public debate that this Bill engenders, but if legislation is not forthcoming, my Office would urge the insurance industry, patient advocacy groups, the federal and provincial governments and other interested parties to work together to come up with a non-legislative, binding solution, such as exists in the United Kingdom for example, to ensure that genetic information is adequately protected and used only as appropriate and necessary.

I welcome your questions.