Canada expands protection of individual rights with new legislation on genetic testing and privacy

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Significant legislative changes are on the horizon in the field of genetic testing with Parliament’s recent passage of Bill S-201: An Act to Prohibit and Prevent Genetic Discrimination (“Act”).  The Act will implement broad protections relating to an individual’s right to access their genetic information, as well as to prevent an individual from being required to undergo genetic testing and to disclose the results of their genetic tests. 

Data privacy and the rise of genetic technology

With advancements in genetic technology and its increasing role in treating and preventing disease, it is not uncommon for genetics to feature in the healthcare management of many Canadians. Beyond traditional healthcare settings, advancements in genetic testing technology have engendered an entire industry of private genetic testing and analysis services. For a fee, consumers can order a variety of genetic testing services from their own homes. The resulting information may be sought out of personal interest, for example in the case of ancestral research, but can also be influential in the prevention of disease and family planning. 

The increased incidence of genetic tests has come with challenges concerning their appropriate use and the management of the information yielded by such tests. The  results of a genetic test could provide information such as an individual’s predisposition to disease and, while innocuous for some, could be highly sensitive for  many others, who could be exposed to negative consequences if such results were disclosed.  While existing federal and provincial privacy legislation provides some protection over this information in certain circumstances, until the passage of Act, there were clear gaps in the protections afforded to an individual’s management of their genetic information.

New and amended legislation

The principal effect of the Act is to prohibit discrimination on the basis of genetics in commercial and employment contexts. In particular, the Act preserves the right of the individual to choose whether or not to undergo genetic testing and to protect the results of genetic tests from disclosure. The Act will have three main legislative effects.

1. The creation of a freestanding Genetic Non-Discrimination Act

The creation of the Genetic Non-Discrimination Act (“GNA”) is the most significant legislative change and will have broad application. Under the GNA it will be prohibited for any person to require an individual to undergo a genetic test, to use the results of a genetic test, or to consider the individual’s refusal to undergo a genetic test, as conditions for entering into the following relationships:

  1. providing goods or services to an individual
  2. entering into or continuing a contract or agreement with an individual, and
  3. offering or continuing specific terms in a contract or agreement with an individual.

As well, if an individual consents to providing the results of a genetic test, the consent must be provided in writing. 

2. Additional provisions to the Canada Labour Code

With respect to the Canada Labour Code, employees will now be entitled to refuse to undergo a genetic test and cannot be required to disclose the results of a genetic test. Furthermore, employers may not commence disciplinary action against employees who choose to exercise these rights. In the event that the results of a genetic test are provided to an employer, it must be done with the written consent of the employee.

3. Amendments to the Canadian Human Rights Act

Finally, amendments to the Canadian Human Rights Act (“CHRA”) will include using “genetic characteristics” as a basis for discriminatory practices and to include this as a prohibited ground of discrimination. The CHRA will also be amended to include the refusal to undergo a genetic test as a ground of discrimination on the basis of genetic characteristics.

Industry reaction and what to expect next

Much debate both for and against the Act has followed the legislative process.  In support, the public clearly stands to benefit from the unimpeded choice of whether or not to access their genetic information without the fear that their decision or the results of such testing may put them at a disadvantage in other endeavours. Criticism of the Act, predominantly voiced by those in the insurance industry, is that the Act deprives commercial parties from information that may put them in an unfair commercial position. While both sides raise valid concerns, Parliament ultimately sided with the rights of the individual.

Although the Act has passed and currently awaits royal assent, its future effect is far from settled. In an interesting development, the federal Liberal government recently indicated its intention to refer the Act to the Supreme Court of Canada once it receives royal assent. The principle concern, as canvassed during committee hearings, is the authority of Parliament to legislate over subject-matter with strong ties to provincial legislative jurisdiction (i.e., property and civil rights). While constitutional law scholars have supported its validity under the “double aspect” doctrine, the Liberal government has taken a cautious approach in seeking the opinion of the SCC.

The controversy surrounding this type of legislation is not unique to Canada. In implementing these broad protections, Parliament diverted from the much narrower approach adopted in the United States with the Genetic Information Nondiscrimination Act (“GINA”), enacted in 2008. Despite the narrower application of GINA, discussion is currently underway to carve out further exceptions to its effects. Given the course of events in both Canada and the United States, further updates on this topic are likely to follow.