Genetic non-discrimination as a privacy issue

The Supreme Court of Canada will hear an appeal regarding the constitutionality of Canada’s Genetic Non-Discrimination Act (GNDA) on October 10, 2019.

The GNDA was one of the rare private members’ bills to be passed by Parliament with support across party lines. However, the GNDA has a troubled history ever since. It came into force in May 2017 but key provisions were struck down as unconstitutional by the Quebec Court of Appeal in December 2018. The case is currently before the Supreme Court of Canada, which has advised the parties that the case will be heard on October 10th. If you are interested, written submissions can be found on the Supreme Court’s website.

What’s the fuss about?

I have previously written about the GNDA here. The GNDA had three parts. The first part, section 3 to 6, criminalizes anyone (e.g. an insurer) requiring an individual to have a genetic test or, if the person had such a test, to disclosure the results of the test as a precondition of:

  • being provided with goods or services,
  • entering into or continuing a contract, or
  • offering or continuing specific terms.

The second part, section 8, regulated the ability of a federally regulated employer from requiring genetic testing and the disclosure of results. The third part, sections 9 and 10, made amendments to the Canadian Human Rights Code to prevent genetic discrimination.

The case concerns the first part of the GNDA. Criminalizing an organization for requesting an individual have a genetic test or from asking for the test results is a controversial use of criminal law. Not surprisingly, insurers felt that they were the target of this law. However, if the objective was to prevent insurers from routinely requiring genetic screening for life and disability insurance, there were other ways to achieve that end without resorting to criminal law.

Not only is the use of criminal law controversial, it may be unconstitutional. At least that is what the Quebec Court of Appeal concluded. When the case was before the Quebec Court of Appeal, the judges could not find a proper criminal law aspect to the the first part of the GNDA – the testing and disclosure provisions. The court summed up the problem this way:

There is no “real public health evil” here that would justify the recourse to subsection 91(27) of the Constitution Act, 1867. The criminal law object advanced to justify the Act is to provide higher quality health care through the promotion of access to genetic tests by supressing the fear that the results of these tests be used for insurance of employment purposes. This is clearly not a criminal law object. The situation is completely distinguishable from the exercise of federal jurisdiction over criminal law regarding tobacco[16] or illicit drugs,[17] which intrinsically present a threat to public health. That is not the case for genetic tests. 

In the matter of the: Reference of the Government of Quebec concerning the constitutionality of the Genetic Non-Discrimination Act enacted by Sections 1 to 7 of the Act to prohibit and prevent genetic discrimination, 2018 QCCA 2193

For its part, the Government of Canada agrees. As do the Attorneys General of Quebec, British Columbia and Saskatchewan.

However, there are a few supporters. The appeal to the Supreme Court of Canada was brought by the Canadian Coalition for Genetic Fairness. The Privacy Commissioner of Canada, the Canadian Human Rights Tribunal and the Canadian College of Medical Geneticists have been granted intervenor status and have submitted briefs in support of the constitutionality of the GNDA.

A privacy issue?

For the Canadian Coalition for Genetic Fairness and the Canadian College of Medical Geneticists, the GNDA is about protecting and promoting health. Individuals should not be concerned about the consequences of getting a genetic test on their insurability or other commercial matters. For these parties, regulating the use of genetic information is not enough (e.g. by restricting the circumstances in which an insurer could require this information or use this information to deny coverage). Instead, a blanket prohibition is required to promote health. For the Canadian Human Rights Commission, the law is about preventing discrimination. The broad prohibition is required so that individuals can feel free to decide whether to pursue genetic testing without fear of discrimination.

Not surprisingly, for the Privacy Commissioner, the GNDA is all about privacy. To make his point, the Commissioner’s lawyers conjure up an image of Canadians being “forced” to take genetic tests or being “forced” to reveal those test results.

Of course, there is no evidence that this dystopian vision would ever come to pass. There is also no evidence that, if there was a pressing danger, provinces would be incapable of stepping in to prevent unfair discriminatory uses of genetic information through provincial human rights legislation.

However, the rhetorical device sets up the Commissioner’s main point: individuals should have the right to deliberate ignorance about their genetic information and should not be coerced through economic transactions to become burdened with information they do not wish to know.

Individuals require mechanisms of control to decide if and when to share their own genetic make-up with the government, private individuals, and organizations. Individuals also have a right to protect themselves from the information “that their own bodies can yield.” Forced testing removes individual choice and can be the “genesis of a life-long psychological prison – the prison of one’s perceived genetic ‘programming’.”

Factum of the Commissioner, at para 18, footnotes omitted.

The limits of the Commissioner’s reasoning

The Commissioner’s central argument is that it is a valid use of criminal law to protect privacy, dignity and bodily autonomy and this is exactly what the GNDA does by criminalizing mandatory genetic testing or the mandatory disclosure of test results.

It will be interesting to see what the Supreme Court judges make of this argument. As compelling as the Commissioner’s impulse is to prevent individuals from being economically coerced (the Commissioner’s lawyers would say “forced”) to have a genetic test or to reveal the results, I’m not convinced that this is a law that has anything to do with the types of privacy interests currently protected by Canadian criminal law.

The main problem is that all of the examples of analogously constitutional laws that the Commissioner’s lawyers cite in defence of the GNDA are distinguishable. For example, the Commissioner’s lawyers cite laws creating the offence of voyerism, the offence of the distribution of intimate images, the interception of private communications and trespassing at night near a dwelling house as examples of criminal laws that protect privacy, dignity and bodily autonomy. Of course, this is correct in so far as it goes.

However, the common thread of those criminal provisions is not about protecting one’s freedom from knowledge about one’s self or even a requirement to disclose such information.

In the case of voyerisim, interception of private communications and trespassing at night near a dwelling house, it is the protection of a reasonable expectation of privacy against surreptitious surveillance or, in the case of trespassing at night, surveillance or intimidating activity. In the case of the distribution of intimate images, the law is about protecting a reasonable expectation of privacy against in images against non-consensual distribution.

In short these laws have nothing to do with protecting a right to be free from economic coercion.



Categories: Genetics, Health, Office of the Privacy Commissioner of Canada, Privacy

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