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

February 24, 2016
Ottawa, Ontario

Opening Statement by Daniel Therrien
Privacy Commissioner of Canada

(Check against delivery)

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Mr. Chair, members of the committee,

Thank you for your invitation to present our views on the most recent version of Bill S-201 (An Act to Prohibit and Prevent Genetic Discrimination). Accompanying me today is Ms. Patricia Kosseim, our Senior General Counsel.

Position on the Bill and Rationale for our Support

We support the aim of Bill S-201 and welcome the general prohibition on the collection of genetic test results as a requirement for providing goods or services or entering into a contract.  And for those individuals who wish to provide such information by choice, we support the proposal that consent be in writing.  Such measures provide Canadians with more meaningful control over their personal information and are positive from a privacy perspective.

Advances in science together with ever more powerful and sophisticated computing technology have significantly lowered the cost and increased the availability of genetic testing, and even whole genome sequencing which can be much more revealing.  

Last October the International Conference of Data Protection and Privacy Commissioners discussed the challenges arising from society’s increasing ability to collect, analyze and use genetic information. It recognized that while there are clearly many benefits that do and will continue to stem from genetic information, the collection and use of such information could lead to a variety of risks including discrimination or the denial of services on the basis of genetic predispositions.

It is crucial that individuals remain in control of their data, receive appropriate information about the options available to them and have their choices respected. This is particularly important in the case of genetic test results that can reveal highly sensitive information about individuals and their families.

We remain mindful of the competing interests, both for and against the collection of genetic information; however, requiring individuals to undergo genetic tests or to disclose existing test results as a condition for purchasing goods or services or entering into contracts is, in data protection terms, both inappropriate and unnecessary at this time.

Without the assurances that individuals’ genetic information will not be used adversely against them, individuals, and society as a whole, risk forgoing the benefits of such testing out of fear of stigmatization and discrimination.  Therefore, we agree that the right thing to do at this time is to adopt a general prohibition against required collection, which Parliamentarians can eventually review should circumstances so require.

Written Consent

I would like to turn to two specific provisions in the Bill.

The addition of Section 5, which proposes to prohibit the collection or use of genetic test results without written consent, is most welcome.  When read together with Sections 3(2) and 4(2), we understand that even if consent were to be sought in writing, the prohibition against making collection or use of genetic test results a condition of service still stands.

The addition of the word “disclose” after “collect and use” would afford individuals even greater control over their personal information and would be consistent with our privacy laws.

With this addition, we are of the view that sections 3, 4, and 5 represent a good balanced way of respecting the wishes of those who want to share their genetic test results and those who would prefer not to.

Amendments to the Privacy Act and PIPEDA

The Bill also proposes to amend both the Privacy Act and PIPEDA by adding “information derived from genetic testing” to the definition of personal information. 

In our view, adding to the definition of personal information is at least unnecessary and perhaps harmful. In both the Privacy Act and PIPEDA, personal information is broadly defined as information about an identifiable individual. Information derived from all types of genetic testing is already covered by existing definitions.  Adding genetic information as an example could have the unintended consequence of narrowing the definition of personal information.

In the case of PIPEDA, information derived from genetic testing would be added as a specific example of personal health information. This choice of words would exclude information derived from tests other than health related, such as ancestry, paternity, nutritional, recreational or behavioural disposition tests.   

It is important to remember that the definition of personal health information was included in PIPEDA for the purpose of interpreting a transitional clause which is no longer legally relevant. PIPEDA came into force in various stages. The law began applying to personal health information only in 2002, in order to give the health sector time to adapt.  Much of the health care sector is now governed by provincial privacy laws that have since been adopted and PIPEDA otherwise treats personal health information like all other personal information. Including "information derived from genetic testing" in the definition of personal health information now would serve no useful purpose and would only add unnecessary confusion.

We therefore recommend that the committee recommend deleting Clauses 11 and 12 from the Bill.

Conclusion

I thank the committee again for allowing me to present our views on this important Bill and look forward to your questions.