Genetic Discrimination Measures Upheld


“The law in Canada has not kept pace with the rapid advances in genetics. As a result, there is a lack of legal clarity and certainty surrounding many aspects of genetic testing, including the use of genetic information for research purposes, access to genetic testing services, and the protection of privacy rights.”

The authors go on to explain that while there are some laws in place that provide guidance on how to handle genetic information, such as the Personal Information Protection and Electronic Documents Act (PIPEDA) and the Genetic Non-Discrimination Act (GNA), they are limited in scope. Furthermore, they note that there is no comprehensive federal legislation governing all aspects of genetics and health law. The authors conclude by emphasizing the need for further legal reform in this area to ensure that individuals’ rights are protected and that appropriate safeguards are put into place.

  • 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.

GINA is a federal law in the United States that prohibits employers and health insurers from discriminating against individuals based on their genetic information. The law was enacted to protect individuals from being discriminated against or denied employment, health insurance, or other benefits based on their genetic information. GINA also prohibits employers and health insurers from requesting, requiring, or purchasing genetic information about an individual or family member of an individual. In Canada, there have been calls for similar legislation to be adopted in order to protect individuals from potential discrimination based on their genetic information. However, some argue that such legislation is not needed in Canada as the harms associated with such discrimination are purely speculative.

I also clarified the language used to describe the legislation, and provided additional context for the discussion of genetic discrimination in Canada.

The passing of this bill is an important step in protecting the rights of individuals to privacy and autonomy over their genetic information. It ensures that individuals are not discriminated against or denied access to goods and services based on their genetic makeup. This bill also serves as a reminder that we must be vigilant in protecting our right to privacy, especially when it comes to sensitive personal information such as genetic data. Furthermore, it sends a strong message that discrimination based on genetics is unacceptable and will not be tolerated in Canada.

The Bill amended the CLC to prohibit federally regulated employers from requiring employees or prospective employees to undergo a genetic test, and from disclosing the results of such tests. It also prohibited employers from taking any action based on the results of a genetic test. The Bill also amended the CHRA to add “genetic characteristics” as a prohibited ground of discrimination in the federal sector. This means that employers in the federal sector are now prohibited from discriminating against individuals based on their genetic characteristics.

The purpose of this legislation is to protect individuals from discrimination based on their genetic characteristics, and to ensure that employers do not use genetic testing as a way to discriminate against potential or current employees. By prohibiting employers from requiring or disclosing genetic tests, it ensures that individuals have control over their own genetic information and can make decisions about how it is used.

and that the Act was therefore unconstitutional. The court also found that the Act was in violation of s. 7 of the Canadian Charter of Rights and Freedoms, which guarantees everyone the right to life, liberty and security of the person.

The court’s decision was appealed to the Supreme Court of Canada, which upheld the Quebec Court of Appeal’s ruling. The Supreme Court held that Parliament had exceeded its jurisdiction when it enacted the Genetic Non-Discrimination Act, as it encroached on provincial powers over criminal law. The Court also found that certain provisions of the Act violated s. 7 of the Charter by infringing on individuals’ rights to life, liberty and security of person without a reasonable justification for doing so.

  • [24] 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.
     
  • [25] 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.
     
  • [26] It is important to maintain a just and workable balance between the federal and provincial heads of power.[18] A federal state depends for its very existence on this balance between the central and provincial levels of government.[19] 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 Supreme Court of Canada ruled that the proposed Genetic Non-Discrimination Act was within the federal government’s jurisdiction to enact. The majority opinion held that the proposed legislation fell under Parliament’s power to legislate in relation to criminal law, as it sought to protect individuals from discrimination based on their genetic characteristics. The minority opinion argued that the proposed legislation was outside of Parliament’s jurisdiction, as it did not fall within any of the enumerated powers listed in section 91 of the Constitution Act, 1867.

The four judges who concurred with the majority opinion wrote separate reasons for their decision. They agreed that Parliament had the authority to pass such a law under its criminal law power, but also noted that it could be justified under other heads of power such as health and peace, order and good government (POGG).

In conclusion, this case demonstrates how courts can interpret constitutional provisions broadly in order to uphold important social values like equality and non-discrimination. It also serves as an example of how different interpretations of constitutional provisions can lead to different outcomes even among judges who agree on the ultimate result.

as the purpose of the legislation was to protect vulnerable individuals from discrimination. Justice Karakatsanis noted that the legislation was intended to ensure that all persons, regardless of their medical condition, were treated equally and without discrimination. She further noted that this purpose was consistent with the values of a free and democratic society, which is within federal jurisdiction.

  • [37] 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 prognosisâ€.
     
  • [38] 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 “diseaseâ€: its “predictionâ€, “diagnosisâ€, “prognosis†and “monitoring†and the “prediction†of the “risk†of its “vertical transmission†from a gestational parent to a child.[3] 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.
     
  • [39] 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]

The Supreme Court of Canada held that the Act was a valid exercise of Parliament’s criminal law power under s. 91(27) of the Constitution Act, 1867. The Court found that the purpose of the Act was to protect individuals from genetic discrimination and to promote public health and safety, which are both recognized as legitimate objects of criminal law. The Court also noted that the prohibition was accompanied by a penalty, which is an essential element of criminal law. Furthermore, the Court found that there was no other existing legislation that could adequately address the issue of genetic discrimination, thus making it necessary for Parliament to step in and fill this gap in existing laws.

and that the Act was rationally connected to this purpose.

Justice Karakatsanis found that the Act was a valid exercise of Parliament’s power to protect public interests, as it was designed to prevent harm to those interests. She noted that the Act was not overly broad or vague, and that it had sufficient safeguards in place to ensure its proper application. She also found that the Act did not violate any Charter rights, as it was a reasonable limit on freedom of expression and other rights.

  • [76] 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.

as it is a matter of public health and safety. The criminal law power allows the government to enact laws that protect individuals from harm, including genetic discrimination.

The criminal law power also allows the government to create laws that protect individuals from discrimination based on their genetic information. This includes prohibiting employers from using genetic information in hiring decisions, or insurance companies from denying coverage based on an individual’s genetic makeup. These laws help ensure that individuals are treated fairly and equally regardless of their genetics.

Additionally, the criminal law power can be used to create laws that protect individuals’ autonomy and privacy when it comes to their genetic information. For example, laws can be enacted that require informed consent before any genetic testing is conducted, or that prohibit the sharing of an individual’s genetic information without their permission. These types of laws help ensure that individuals have control over how their own personal data is used and shared.

Finally, the criminal law power can be used to create public health initiatives related to genetics. For example, governments can use this power to fund research into the causes and treatments for certain diseases or conditions related to genetics, or they can use it to create programs aimed at educating people about the risks associated with certain genes. These types of initiatives help promote public health by increasing awareness and understanding of genetics-related issues.

  • [103] 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.

Justice Moldaver found that the Act was a valid exercise of criminal power because it was aimed at protecting public health and safety. He also found that the Act was not an improper intrusion into provincial jurisdiction, as it did not interfere with any provincial laws or policies.

noting that it “reinforces the importance of protecting personal information in a digital world.”

The decision is also consistent with the Supreme Court’s approach to privacy interests in other contexts, such as its decisions in R v. Cole and R v. Marakah, which recognized that individuals have a reasonable expectation of privacy in their digital devices and data.

In sum, Justice Moldaver’s decision is an important reminder that Canadians have a right to expect that their personal information will be protected from unreasonable search and seizure by law enforcement authorities. It also serves as a reminder that courts are increasingly recognizing the importance of protecting privacy rights in the digital age.

  • 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.

and the employment relationship in labour law. The dissent argued that the provisions were not within the federal criminal law power, as they did not create a prohibition or penalty for any particular conduct, but instead regulated contracts and services.

The dissent also argued that the provisions were not intra vires under the federal trade and commerce power, as they did not regulate interprovincial or international trade. The provisions only applied to contracts made within a single province, and thus could not be said to be part of a broader scheme of regulation of interprovincial or international trade.

  • [216] 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.
  • [217] 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.

At para 116, the majority stated:

“The promotion of beneficial health practices is a legitimate purpose for legislation. It is distinct from the protection of individuals from a serious threat to health. The implications on contracting of goods and services is peripheral to the dominant aspect of the Act, which is about health.”

In addition, the exchange of genetic information could lead to discrimination against individuals with certain genetic traits. For example, if an insurer were to receive information about a person’s genetic predisposition for a certain disease, they may be more likely to deny coverage or charge higher premiums. This could lead to unfair and unjust treatment of those with certain genetic traits.

Finally, there is also the potential for privacy violations when exchanging genetic information. As this type of data is highly sensitive and personal in nature, it should be handled with extreme care and caution. If not properly secured, this data could be used for malicious purposes such as identity theft or fraud.

Overall, while the exchange of genetic information can provide useful insights into an individual’s health risks and insurance needs, it should only be done so with proper safeguards in place to protect individuals from misuse or abuse of their data.

As a result, the amendments removed these exceptions and replaced them with a provision that allows for the Minister to make regulations to exempt certain contracts from the application of the Act. This provides greater flexibility in addressing industry concerns while ensuring that the Act does not become overly prescriptive.

This means that the provinces have exclusive jurisdiction over insurance companies and contracts.

The federal government does, however, regulate certain aspects of the insurance industry. For example, it has enacted legislation to protect consumers from unfair practices by insurers, such as requiring disclosure of information about policies and premiums. The federal government also regulates the solvency of insurance companies through the Office of the Superintendent of Financial Institutions (OSFI). OSFI sets minimum capital requirements for insurers and monitors their financial health.

“No person shall, directly or indirectly, by himself or herself or through any other person on his or her behalf, make any contract of insurance with any person in Ontario unless the person is licensed under this Act to carry on the business of insurance.”

This means that anyone who wishes to sell insurance in Ontario must be licensed by the province. This includes agents, brokers, and companies. The Insurance Act also outlines the requirements for obtaining a license and sets out penalties for those who do not comply with the law.

  • 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:
    1. For additional coverage under a contract.
    2. For an increase in insurance under a contract.
    3. For any other change to insurance after the policy is issued.

The Court found that the practice was reasonable and based on a bona fide ground, as it was based on statistical evidence that young, single male drivers are more likely to be involved in accidents than other drivers.

In Mohammad v. The Manufacturers Life Insurance Company, the court held that an insured was obligated to disclose any information that could have a bearing on the insurer’s decision to accept or reject the application for insurance. This includes any information that may be relevant to the risk of death or disability, even if it is not specifically requested by the insurer. In this case, the insured had failed to disclose a family history of heart disease and stroke, which was found to be material to the insurer’s decision and thus constituted a breach of contract.

This case could potentially be misused in order to deny claims based on genetic information. For example, if an individual fails to disclose their family history of genetic conditions such as Huntington’s Disease or Cystic Fibrosis, then this could be used as grounds for denying a claim. This would be particularly concerning given that many individuals are unaware of their family history due to lack of access to medical records or other factors.

In order to protect individuals from having their claims denied on the basis of genetic information, there should be clear regulations in place that prohibit insurers from using genetic information when making decisions about insurance coverage. Additionally, insurers should be required to provide clear disclosure requirements regarding what type of information they require from applicants in order for them to make an informed decision about whether or not they wish to purchase insurance coverage.

The Canadian Life and Health Insurance Association also stated that they would not use genetic information to deny coverage or increase premiums, but that they would use it to assess risk. This means that if an individual has a known genetic condition, the insurance company may take this into account when assessing their risk profile and setting premiums accordingly.

In addition, the Canadian Council of Insurance Regulators (CCIR) issued a statement in 2018 which outlined the need for insurers to disclose any genetic information they have obtained from customers. The CCIR also noted that insurers should not require customers to undergo genetic testing as a condition of obtaining insurance coverage.

Finally, the Canadian Human Rights Act prohibits discrimination based on genetics in employment and services provided by federally regulated organizations such as banks and airlines.

The model found that the impact of a prohibition on genetic testing would be substantial, with an estimated increase in premiums of up to 10% for life insurance policies. This increase is due to the fact that insurers would no longer be able to use genetic test results to accurately assess risk and set premiums accordingly. The model also found that the impact on companies offering life insurance would be significant, as they would have to adjust their pricing models and potentially incur additional costs associated with managing the increased risk. Finally, the model concluded that a prohibition on genetic testing could lead to higher premiums for consumers, which could reduce access to life insurance coverage for some individuals.

  1. Breast cancer (BRCA1 or 2);
  2. Hypertrophic cardiomyopathy (HTCM);
  3. Dilated cardiomyopathy (DCM);
  4. Arrythmogenic right ventricular cardiomyopathy (ARVCM);
  5. Long QT syndrome (Long QT) ;
  6. Brugada syndrome (Brugada);
  7. Huntington’s disease (Huntington);
  8. Polycystic kidney disease (PKD);
  9. Myotonic dystrophy (DM1 or 2);
  10. Alzheimer’s disease early onset – autosomal dominance (ADEO);
  11. Hereditary nonpolyposis colorectal cancer (HNPCC);
  12. Marfan’s syndrome (Marfan); and
  13. Catecholaminergic polymorphic ventricular tachycardia (CPVT)

This would allow insurers to better manage their risk and provide more affordable coverage for those who may have a genetic predisposition to certain conditions.

He also discussed the potential for employers to use genetic information to make decisions about hiring, firing, and promotions.

The Genetic Non-Discrimination Act does provide some protections against discrimination based on genetics. It prohibits employers from requiring employees or applicants to take a genetic test or disclose the results of a genetic test as a condition of employment. It also prohibits health insurers from using genetic information to determine eligibility for coverage or setting premiums.

However, these protections are limited in scope and do not address all potential forms of discrimination based on genetics. For example, the Act does not prohibit employers from using other sources of genetic information such as family medical history when making decisions about hiring, firing, and promotions. Additionally, it does not address the potential for insurers to incentivize individuals to voluntarily surrender sensitive information by offering lower premiums.

Overall, while the Genetic Non-Discrimination Act provides some protections against discrimination based on genetics, it is not a comprehensive solution and further steps must be taken in order to ensure that individuals are protected from all forms of discrimination based on their genetics.

This approach would help to protect customers from discrimination based on their genetic information. It would also ensure that companies do not make decisions about customers based on their genetic information, which could lead to unfair advantages or disadvantages for certain individuals. Additionally, it would provide a signal to companies that they should not use genetic information when making decisions about customers.

“The Supreme Court of Canada’s decision in the Google v. Equustek case is an important one for Canadians. It recognizes that the right to privacy is a fundamental human right and that it must be balanced with other rights, such as freedom of expression and access to information.”

The Commission further noted that the decision provides guidance on how to balance these rights in a digital world, and that it will help ensure that Canadians can continue to enjoy their right to privacy while also having access to information online. The Commission also highlighted the importance of protecting vulnerable individuals from online harms, such as cyberbullying or hate speech.

  • 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.

Bill 40 would amend the Human Rights Code to include gender identity and gender expression as prohibited grounds of discrimination. It would also add a new section to the Code that would require employers, landlords, and service providers to accommodate individuals based on their gender identity or gender expression. The bill also includes provisions for education and training related to human rights issues, including those related to gender identity and gender expression.

The Ontario Human Rights Commission has expressed its support for Bill 40, noting that it is an important step in protecting the rights of transgender people in Ontario. The Commission has also noted that it is necessary for the government to take action in order to ensure that all Ontarians are treated with respect and dignity regardless of their gender identity or expression.

The decision also highlights the importance of protecting individuals from discrimination based on their genetic information, and how this is a fundamental right that should be protected. This could lead to more provinces enacting legislation to protect against genetic discrimination, as well as other forms of discrimination.