In Chapter 11 of the “Canadian Health Law Practice Manual,” Genetics and the Law, Amy Zarzeczny, Tracey M. Bailey and Timothy Caulfield state,
- One concern that consistently emerges in relation to obtaining genetic information is the worry that an individual may be discriminated against on the basis of his or her genetic make-up and, specifically, on the basis of a predisposition to a certain condition or disease.
- Discrimination can of course occur on a wide variety of fronts including, but not limited to, employment, education, housing and insurance…, not to mention on a social level.
- Whether or not actual evidence of discrimination on the basis of genetic characteristics exists remains somewhat of an open question. Regardless, the associated fear is certainly real, and has received significant attention in the international realm.
They refer to the Genetic Information Nondiscrimination Act of 2008 (GINA), P.L. 110-233, 122 Stat. 881 in the U.S., and calls in Canada to adopt a similar approach or conversely that it is not needed here, as the harms were purely speculative.
In my 2017 edits to this text, I provided some background to attempts to introduce similar legislation in Canada, including Bill C-508: An Act to amend the Canadian Human Rights Act (genetic characteristics) in 2014, a private member’s bill which passed First Reading and reinstated in 2015 as Bill C-445), and Bill S-201 in 2013, which was referred to the Standing Senate Committee on Human Rights on June 16, 2014.
Bill S-201 received Royal Assent on May 4, 2017, and I commented that it was an important step to fight against fallacious assumptions being made about genetic traits. The bill made it a criminal offence to require any person to undergo a genetic test or disclose its results for a variety of contexts, including providing goods or services, entering a contract, or offering specific terms of a contract to a person.
The Bill also amended the Canada Labour Code (CLC) to protect federally regulated employers from being required to undergo or disclose genetic tests, and amended the Canadian Human Rights Act (CHRA) to prohibit discrimination in the federal sector based on genetic characteristics.
The Genetic Non‑Discrimination Act was referred by the Government of Quebec to the Quebec Court of Appeal to assess the constitutionality of it. The court concluded certain provisions were ultra vires to the jurisdiction of Parliament over criminal law under s. 91(27) of the Constitution Act, 1867,
-  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 or illicit drugs, which intrinsically present a threat to public health. That is not the case for genetic tests.
-  The idea is not to evacuate the issues which may arise from the use of genetic tests or discrimination based on genetic characteristics. Rather, it is a matter of determining which level of government, within the Canadian constitutional order, holds the power to legislate on the subject. In the absence of a criminal law object, these issues must be addressed by Parliament and the provincial legislatures within the ambit of their respective areas of jurisdiction. At the very least, in the absence of such an object, we must conclude that sections 1 to 7 do not constitute a valid exercise of the federal jurisdiction over criminal law.
-  It is important to maintain a just and workable balance between the federal and provincial heads of power. A federal state depends for its very existence on this balance between the central and provincial levels of government. This is why courts, sensitive as they are to the necessity of preserving this balance to insure Canada’s future, have not been reluctant to invalidate federal legislative provisions inconsistent with the requirements of subsection 91(27) of the Constitution Act, 1867. In short, Parliament’s jurisdiction over criminal law cannot be exercised when the object of the legislation does not truly fit within the framework of criminal law. That is clearly the case in this instance.
The matter was then appealed to the Supreme Court of Canada, which released a decision in Reference re Genetic Non‑Discrimination Act this week granting the appeal, in a split 3-2-4 decision.
The reasons of Justice Karakatsanis described the pith and substance of the legislation was related to discrimination, despite reference to medical terms that would otherwise place this subject within the provincial jurisdiction,
-  The definition of “genetic test” in s. 2 of the Act is broad and captures analyses of DNA, RNA or chromosomes performed with a wide range of ends in mind. Section 2 defines a genetic test as “a test that analyzes DNA, RNA or chromosomes for purposes such as the prediction of disease or vertical transmission risks, or monitoring, diagnosis or prognosis”.
-  This definition identifies a test that conducts analysis of genetic material and provides examples of the types of purposes for which such analysis may be undertaken. Each example speaks to “disease”: its “prediction”, “diagnosis”, “prognosis” and “monitoring” and the “prediction” of the “risk” of its “vertical transmission” from a gestational parent to a child. On their face, these words appear to be illustrative examples. But, when read in context, they serve to delineate the scope of the definition. After all, analysis is always conducted for a purpose, so Parliament’s choice to refer to analysis for certain types of purposes must be given meaning. The use of these medical terms relating to disease in association with one another indicates that the purpose for which the analysis is undertaken must be health‑related. Since a genetic test is defined as an analysis of genetic material for a health‑related purpose, I think it fair to say that the definition speaks to a health‑related genetic test. Indeed, Parliament’s particular concern for protecting individuals’ control over the results of health‑related genetic tests pervades the debates, as I explain below.
-  Reading the definition this way would support — not detract from — the conclusion that the Act aims to combat discrimination based on genetic test results. Health‑related genetic tests reveal highly personal information — details that individuals might not wish to know or share and that could be used against them. The prohibitions target a broad range of conduct that creates the opportunity for genetic discrimination based on intimate personal information revealed by health‑related tests. Parliament saw genetic test results relating to health as particularly vulnerable to abuse and discrimination. The intrinsic evidence suggests that the purpose of the provisions is to combat discrimination based on information disclosed by genetic tests by criminalizing compulsory genetic testing, compulsory disclosure of test results, and non‑consensual use of test results in a broadly‑defined context (the areas of contracting and the provision of goods and services). The extrinsic evidence points largely in the same direction.
- [emphasis added]
In enacting the Act, Parliament intended to combat genetic discrimination by filling the gap in existing laws, which would place it in Parliament’s s. 91(27) power over criminal law, rather than the provincial legislatures’ s. 92(13) power over property and civil rights. The Act consisted of a prohibition and was accompanied by a penalty, but it was unclear if it was backed by a criminal law purpose.
Justice Karakatsanis demonstrated that the Act represented Parliament’s response to a threat of harm to a public interest that was traditionally protected by the criminal law, because it involved peace, order, security, health and morality, or to another similar interests,
-  I would highlight that Parliament is not, and has never been, restricted to responding to a so‑called “evil” or “real evil” when relying on its criminal law power. Rand J. did not require the presence of an evil or of evil effects in the Margarine Reference. He also referred to “injurious” or “undesirable” effects: p. 49. The notion of “evil” cannot serve to effectively limit Parliament to using the criminal law power to respond to moral threats. That would sweep away the other firmly established public interests protected by the criminal law and stymie the criminal law’s evolution. The criminal law is not confined to prohibiting immoral conduct: Firearms Reference, at para. 55.
The implications of genetic discrimination on autonomy, privacy, equality, and public health placed this matter within the criminal law power,
-  Parliament took action in response to its concern that individuals’ vulnerability to genetic discrimination posed a threat of harm to several public interests traditionally protected by the criminal law. Parliament enacted legislation that, in pith and substance, protects individuals’ control over their detailed personal information disclosed by genetic tests in the areas of contracting and the provision of goods and services in order to address Canadian’s fears that their genetic test results will be used against them and to prevent discrimination based on that information. It did so to safeguard autonomy, privacy and equality, along with public health. The challenged provisions fall within Parliament’s criminal law power because they consist of prohibitions accompanied by penalties, backed by a criminal law purpose.
Although Justice Moldaver agreed with Justice Karakatsanis that the Act was a valid exercise of criminal power, he disagreed about its pith and susbstance. The Act was about protecting health by giving people control over the collection, use and disclosure of genetic information.
In adopting this approach, Justice Moldaver effectively applies a privacy interest, informed by PIPEDA principles, even if not explicitly referring to them. Not surprising then, the Office of the Privacy Commissioner of Canada issued a statement in support of the decision,
- The Act affirms that people are in no way obliged to disclose their genetic test results to an employer or insurance company or any other business, nor should they feel any pressure to do so. If, on the other hand, a person wishes to disclose their results voluntarily, that person’s consent must be in writing, fully informed and freely given.
- The collection of personal information, including sensitive genetic information, can result in discrimination. In a time of unprecedented demand for personal data, this law is a critically important development for privacy protection.
The dissent, written by Justice Kasirer, concluded that the pith and substance of the provisions was to regulate contracts and the provision of goods and services, placing it within the provincial jurisdiction over property and civil rights conferred by s. 92(13). The specific implication for insurance contracts and employment were the dominant effects of the provisions, which would undermine the contractual relationship in insurance law,
-  Insurance contracts, in both the common law and the civil law, require utmost good faith from both parties (see D. Boivin, Insurance Law (2nd ed. 2015), at p. 129; and D. Lluelles, Droit des assurances terrestres (6th ed. 2017), at pp. 31-35). As a result, the principle of equal information, according to which material information must be disclosed, is central to insurance contracts.
-  Section 4 of the Act — which allows individuals who have undergone genetic tests to enter into contracts without having to disclose the results of those tests — represents a departure from this well-established principle. It allows individuals to choose to provide favourable genetic test results to insurers while allowing others to retain unfavourable ones, thus permitting some people to take advantage of the provisions to enter into an insurance contract even though they are aware of a material risk that has not been divulged to the insurer. This could have significant impacts on premiums across the pool of policy-holders, as insurers attempt to transfer the risk of non-disclosure to other policy-holders.
- [emphasis added]
The majority rejected that argument at para 116, by distinguishing the promotion of beneficial health practices from the protection of individuals from a serious threat to health. Despite the implications on contracting of goods and services is peripheral to the dominant aspect of the Act, which is about health.
The problem with this exchange of information, which I alluded to before, is that the simplistic reduction of genetic traits absent any other information is usually misleading, even in the insurance context. This would not prevent insurers from misusing this information regardless. While the courts should not play scientist, insurers should not play this role either.
The predecessor bill, prior to its amendments, included exceptions for insurance contracts that exceeded $1 million or paid a benefit of $75,000 a year. These provisions were introduced to try to address the concerns of the insurance industry, but their inclusion became controversial as it would appear to inform the pith and substance of the Act.
The federal government does have some limited involvement with insurance companies, such as in the Insurance Companies Act, but this is largely limited to banks, trusts, and some federally incorporated companies. Generally though, insurance contracts are governed by provincial laws. Although not explicitly stated in the Constitution Act, 1867, courts have generally found insurance to fall under “property and civil rights in the province” under section 92(13).
In Ontario, the Insurance Act states,
- Duty to disclose
- 183 (1) An applicant for insurance and a person whose life is to be insured shall each disclose to the insurer in the application, on a medical examination, if any, and in any written statements or answers furnished as evidence of insurability, every fact within the person’s knowledge that is material to the insurance and is not so disclosed by the other.
- Failure to disclose
- (2) Subject to section 184 and subsection (3) of this section, a failure to disclose, or a misrepresentation of, such a fact renders the contract voidable by the insurer.
- Failure to disclose, application for change, etc., in contract
- (3) A failure to disclose, or a misrepresentation of, a fact referred to in subsection (1) relating to evidence of insurability with respect to the following kinds of applications renders the contract voidable by the insurer, but only in relation to the addition, increase or change applied for:
- For additional coverage under a contract.
- For an increase in insurance under a contract.
- For any other change to insurance after the policy is issued.
A discriminatory practice may be justified in Ontario insurance law where it is reasonable and on a bona fide grounds. The Supreme Court of Canada upheld in Zurich Insurance Co. v. Ontario (Human Rights Commission) a prohibited discriminatory practice of charging young, single male drivers higher car insurance rates than other drivers, based on an exemption that is maintained in the Code to this day.
Although no reported decisions indicate that genetic information has been used to deny a claim in Ontario, there are troubling decisions such as Mohammad v. The Manufacturers Life Insurance Company that provide a rather expansive and retrospective interpretation of the insured’s obligations, which could very easily be misused in the context of genetic information.
Several insurance organizations in Canada have actually stated that there is an obligation to disclose genetic information, where it is known. The Canadian Life and Health Insurance Association, who opposed the bill, had a 2014 position statement that required disclosure of genetic information if it was available, even if they did not require testing as a basis for contract. The Privacy Commissioner of Canada explicitly referred to this position statement as a valid basis for concern for genetic discrimination.
The Canadian Institute of Actuaries also released a Statement on Genetic Testing and Insurance from 2014, which emphasized that the premiums charged by an insurer must reflect the characteristics of the risk being covered. A model that same year by the Canadian Institute of Actuaries assessing the impact on companies and the public on life insurance from a prohibition to genetic tests claimed the impact would be “substantial,” based on 13 genetic markers alone:
- Breast cancer (BRCA1 or 2);
- Hypertrophic cardiomyopathy (HTCM);
- Dilated cardiomyopathy (DCM);
- Arrythmogenic right ventricular cardiomyopathy (ARVCM);
- Long QT syndrome (Long QT) ;
- Brugada syndrome (Brugada);
- Huntington’s disease (Huntington);
- Polycystic kidney disease (PKD);
- Myotonic dystrophy (DM1 or 2);
- Alzheimer’s disease early onset – autosomal dominance (ADEO);
- Hereditary nonpolyposis colorectal cancer (HNPCC);
- Marfan’s syndrome (Marfan); and
- Catecholaminergic polymorphic ventricular tachycardia (CPVT)
The model utilized the $1 million and $100,000 thresholds, concluding the former would result in a very substantial increase in premium rates for term insurance under the former, but would be small enough under the latter to be absorbed by insurance companies. In other words, insurers can account for these risks without relying on genetic information by applying a more graduated cost to term policies related to the amount of insurance.
The Genetic Non‑Discrimination Act does not put an end to the concerns of discrimination due to genetics. Scott Peppet discussed in the Northwestern University Law Review the challenge of voluntarily surrendering sensitive information, which can be incentivized by insurers through lower premiums.
This approach would effectively “signal” who appealing customers were, over others that did not volunteer this same information. In this way, the U.S.’ GINA goes further in §§ 101–105 than Canada’s Genetic Non‑Discrimination Act, by prohibiting any adjustments or contributions based on genetic information. Canadians remain unprotected in this respect.
Although grounded in privacy notions, this is very much a human rights type issue. The Canadian Human Rights Commission also released a statement about the Court’s decision, saying,
- While today’s ruling is reassuring to people across Canada who need the benefits of a genetic test, there is still work to be done. Since 2017, the Canadian Human Rights Act offers added protection against genetic discrimination under federal jurisdiction. We will continue to encourage provincial and territorial governments to make similar improvements to their own human rights legislation. In addition, we urge Parliament to affirm privacy as a human right in Canada. A human rights approach to privacy law reform in this country is needed to address emerging concerns about how technology and the digital world are increasingly affecting our everyday lives.
- [emphasis added]
A Private Member’s bill was introduced in 2013 which would make these amendments to Ontario’s Human Rights Code, but did not go beyond First Reading. More recently, Bill 40 passed Second Reading in 2018, and was referred to the Standing Committee on the Legislative Assembly, but has not progressed further.
The Supreme Court’s decision here, which elaborates in both the majority and minority decisions how important protection against genetic discrimination is in our contemporary society, may be the push needed for this to be enacted provincially as well.