Any substantive changes in this Legislative Summary that have been made since the preceding issue are indicated in bold print.
Bill S-201, An Act to prohibit and prevent genetic discrimination1 (short title: Genetic Non-Discrimination Act), is a Senate public bill introduced by Senator James S. Cowan on 8 December 2015. The bill makes it a criminal offence for any person to require an individual to undergo a genetic test, or to disclose the results of such a test, as a condition of providing goods or services; of entering into or continuing a contract or any part of an agreement; or of offering or continuing to offer specific terms and conditions in a contract or agreement with that individual. It provides exceptions for health care practitioners and researchers in using genetic test information. Through amendments to the Canada Labour Code (CLC), the bill also protects employees of federally regulated employers from being required by their employer to undergo genetic tests or to disclose genetic test results.2 Similarly, amendments to the Canadian Human Rights Act (CHRA)3 prohibit discrimination in the federal sector based on a person’s genetic characteristics.
The Senate passed the bill with amendments on 14 April 2016. It was then referred to the House of Commons and received first reading on 3 May 2016. The bill was referred to the Standing Committee on Justice and Human Rights on 26 October 2016. On 5 December 2016, the Committee reported the bill with an amendment (though this was a coordinating amendment that did not substantively alter the bill).
Genetic testing refers to the process of analyzing a person’s genes to identify specific traits or markers. These traits have been referred to as a person’s “genetic characteristics.” 5 Bill S-201 adds the term “genetic characteristics” to the list of prohibited grounds of discrimination in the Canadian Human Rights Act.
A great deal of personal information can be gleaned from a person’s genetic markers. They can be used for non-medical purposes, such as identifying a person’s ancestral origins, establishing whether two people are related or determining whether a person is connected to a particular crime. Genetic markers can also be used for medical purposes, allowing health professionals to diagnose existing diseases and conditions, and determine the most appropriate treatment for a patient. In addition, genetic markers can identify a predisposition to certain conditions, thus enabling early intervention. Currently, accurate tests that can predict health and life outcomes exist for only a few genetic conditions, though this field is progressing.6
As more services are being offered that make use of genetic information, the protection of that information has become a key issue.7 For example, if genetic testing reveals there is a risk that a person could develop a genetic condition or disease, the disclosure of this information could negatively affect his or her chances of obtaining appropriate life or disability insurance coverage or of being hired by an employer. Prospective insurers or employers might discriminate against the person if they are concerned that entering into a contract with him or her could entail higher costs or increased inconvenience in the future. Fears that genetic information could prompt discriminatory behaviour of this kind have led to calls for legislation to minimize that risk.
In light of such concerns, the Office of the Privacy Commissioner of Canada has made the protection of genetic information one of its policy priorities in recent years.8 The Commissioner, however, has recommended against amending federal privacy laws - the Privacy Act 9 and the Personal Information Protection and Electronic Documents Act (PIPEDA)10 - since in his view, these laws already contain provisions that would apply to genetic information.11
Although some provinces have begun to include some protection for genetic information in their privacy legislation,12 at present no federal laws explicitly cover the use of genetic information or prohibit discrimination on the basis of genetic characteristics. It is possible that, if a genetic discrimination case were to proceed in court, the CHRA, Privacy Act, PIPEDA or a provincial human rights law would be interpreted as already providing some protection from genetic discrimination and some protection of the privacy of genetic information. However, since such a case has yet to be adjudicated in Canada, uncertainty remains.13 Various organizations, legal experts and other commentators have debated the need to pass legislation in Canada, whether at the provincial or federal level, to address these issues.14
The prevalence of genetic discrimination in Canada and other countries also remains an open question: commentators and organizations variously claim that discrimination is already a problem; that there is no evidence that it is widespread; or that there is not enough reliable information on which to base conclusive statements.15 An academic study of case law noted that while no court or tribunal has yet to specifically examine genetic discrimination, this “does not suggest that” such discrimination is not taking place.16
When the Standing Senate Committee on Human Rights studied Bill S-201, witnesses testified that some patients have been discriminated against on the basis of their genetic information, while others have declined potentially beneficial genetic testing because it could compromise their ability to obtain insurance.17 The fact that family members share many of the same genes means that genetic test results for one person could also reveal much about his or her family members. The insurability of family members could potentially be affected if these test results were shared with an insurer. This adds a layer of complexity to the debate. What is certain is that the number of reliable genetic tests being offered is increasing, as are the ways in which such information is being used18 and the services that are available to help individuals understand their test results.19
In the absence of a law that explicitly regulates the use of genetic test results by insurers in Canada, the Canadian Life and Health Insurance Association, the Canadian Institute of Actuaries, and the Canadian Life Insurance Medical Officers Association have taken the position that they will not require genetic testing of applicants for insurance, but will require disclosure of any existing test results.20
Around the world, concern about the consequences of genetic discrimination has prompted varied responses in recent years from governments and international organizations. Some countries, such as Australia, France and the United States, have passed laws to prohibit certain forms of genetic discrimination.21 The United Kingdom has taken a different approach by permitting its insurance industry to adopt a self-regulating policy that limits how genetic information may be used.22 The United Nations Educational, Scientific and Cultural Organization (UNESCO) has passed resolutions addressing the use of human genetics, such as the 1997 Universal Declaration on the Human Genome and Human Rights (which was also endorsed by the UN General Assembly in 1998).23 Among other things, this instrument is intended to prevent genetic discrimination and any use of genetic information that would be contrary to human dignity and human rights.
Six previous bills that would have provided some protection against genetic discrimination were introduced in the 40th and 41st parliaments. Five of the bills were similar to the current Bill S-201, in that they added “genetic characteristics” to the list of prohibited grounds of discrimination in the CHRA, among other changes.
Three of these were private members’ bills that died on the Order Paper in the House of Commons.24 The fourth and fifth (Bill S-218 and Bill S-201) were identical versions of a Senate public bill resembling the current Bill S-201.25 Like the current bill, these bills were introduced by Senator Cowan. Bill S-218 had reached debate on a motion for second reading when the 1st Session of the 41st Parliament was prorogued. The earlier Bill S-201 was referred back to the Senate with a number of amendments after being studied by the Standing Senate Committee on Human Rights, but it did not receive third reading before the dissolution of the 41st Parliament.26 Both bills therefore died on the Order Paper before becoming law.
One key difference between the current Bill S-201 and its predecessor from the 41st Parliament is the removal of a clause that would have provided an exemption for high-value insurance contracts (as discussed in section 3 of this Legislative Summary).
A sixth bill covering similar ground was a government bill: Bill C-68, An Act to amend the Canadian Human Rights Act, the Privacy Act and the Personal Information Protection and Electronic Documents Act (short title: Protection Against Genetic Discrimination Act). It was introduced in the House of Commons on 9 June 2015 by the Honourable Peter MacKay, then Minister of Justice and Attorney General of Canada.27 It died on the Order Paper upon the dissolution of the 41st Parliament.
Bill C-68 would have added a new provision to the CHRA to extend existing prohibitions against discriminatory practices in order to protect people who, through genetic testing, have learned that they are predisposed to acquire a disability. The bill also sought to amend the Privacy Act and PIPEDA to specifically include information resulting from genetic testing within existing definitions of the types of personal information that are protected by these laws.
Bill S-201 contains 10 clauses. Clauses 1 through 7 create a new Act, the Genetic Non-Discrimination Act. The remaining clauses amend various laws.
Clause 2 of Bill S-201 provides definitions for the terms “disclose,” “genetic test,” and “health care practitioner” in the new Genetic Non-Discrimination Act:
Clauses 3 to 7 of the bill create criminal offences and the punishments associated with those offences.
Clause 3(1) prohibits any person from requiring another individual to undergo genetic testing in order to be provided with goods and services; to enter into or continue a contract or agreement; or to be offered or continue to receive specific terms or conditions in a contract or agreement. Clause 3(2) prohibits any person from refusing to engage in any of the activities described in clause 3(1) because an individual has refused to undergo genetic testing.
Clause 4 prohibits any person engaged in the activities described in clause 3(1) from requiring that an individual disclose the results of a genetic test already taken. It also prohibits any person from refusing to engage in these same activities because an individual has refused to disclose the results of a genetic test.
Clause 5 of the bill adds that it is prohibited for any person engaged in the activities listed in clause 3(1) to collect, use or disclose an individual’s genetic test results without that person’s written consent. These offences are included in the new Genetic Non-Discrimination Act rather than being introduced as amendments to an existing law, such as the Criminal Code.
Clause 6 creates exemptions for persons providing medical or pharmaceutical care or conducting medical or scientific research by stating that clauses 3 to 5 do not apply when such individuals are providing health services or when an individual is participating in a research project.
Clause 7 sets out punishments for the above-mentioned offences. Every person who contravenes the provisions described in clauses 3 to 5 is guilty of an offence that is punishable on conviction on indictment to a fine not exceeding $1 million or to imprisonment for a term not exceeding five years, or to both; or on summary conviction, to a fine not exceeding $300,000 or to imprisonment for a term not exceeding 12 months, or to both.
Clause 8 of Bill S-201 amends Part III of the Canada Labour Code to add two new sections: 247.98 and 247.99. The CLC applies generally to employment matters for industries within federal jurisdiction.29 Part III is divided into 16 divisions that set out various terms and conditions of employment, including such matters as hours, wages, leave and holidays. Sections 247.98 and 247.99 form a new subdivision - “Division XV.3: Genetic Testing” - of Division XV in Part III (which covers the payment of wages, sexual harassment and leave of absence for members of the reserve forces).
New section 247.98 of the CLC protects an employee’s right not to be required to undergo a genetic test or to disclose the results of a test already taken. Employers are prohibited from taking such actions as dismissing, suspending, imposing a penalty on or refusing to pay an employee because he or she refused to take or disclose the results of a genetic test or as a consequence of the results of any genetic tests. Furthermore, no other person is permitted to disclose to the employer the results of an employee’s genetic test, or the fact that an employee has taken a test, and the employer may not collect or use such test results without the written consent of the employee.
New section 247.99 sets out provisions for the enforcement of section 247.98. It permits an employee to make a complaint alleging that an employer has contravened section 247.98. If a complaint is made, it is sent to an inspector designated by the Minister of Labour pursuant to section 249 of the CLC. The inspector will then seek to assist the parties to settle the complaint. If this fails, a report is sent to the Minister, who may then appoint an adjudicator. If the adjudicator decides that the employer has contravened section 247.98, then he or she may order the employer to take such steps as reinstating the employee, paying the employee compensation, rescinding any disciplinary action or offering any other “equitable” remedy.
The Canadian Human Rights Act applies to the federal sector, including federal government departments and agencies, Crown corporations and federally regulated businesses. Section 3(1) of the Act prohibits discrimination on the basis of specified grounds, such as race, sex, age, religion or disability, in the context of employment, accommodation and publicly available services. The Act specifically prohibits “discriminatory practices,” for example, denying a good, service or accommodation; refusing to employ a person; and excluding a person from membership in an organization (sections 5 to 14.1 of the Act). The Canadian Human Rights Commission refers to discrimination as “an action or a decision that treats a person or a group negatively for reasons such as their race, age or disability.” 30 Section 2 of the CHRA places a positive duty on employers and service providers to take reasonable steps to accommodate people’s needs in order to prevent discrimination on the prohibited grounds.31
The CHRA allows a person who feels that his or her rights under the Act have been infringed upon or violated to make a complaint to, or to seek the assistance of, the Canadian Human Rights Commission. The Commission will attempt to mediate any dispute between parties; if this is unsuccessful, the complaint may be referred to the Canadian Human Rights Tribunal for adjudication.
Canadian provinces and territories also have human rights laws that apply to matters within their own jurisdictions (including public institutions such as schools and most private-sector employment, services and accommodation matters). Canadian courts have considered these laws to have quasi-constitutional status, thereby giving the rights they contain greater protection.32
Clauses 9 and 10 of the bill add “genetic characteristics” as a prohibited ground of discrimination for the purposes of the CHRA by including it in the purpose section and in the list of prohibited grounds outlined in section 3 of the Act.
When it was introduced, the current Bill S-201 included a definition stating that discrimination on the ground of genetic characteristics is understood to be discrimination based on “the results of a genetic test” or “the refusal of a request to undergo a genetic test or to disclose, or authorize the disclosure of, the results of a genetic test.” 33 However, this definition was dropped from the current bill on the recommendation of the Canadian Human Rights Commission in its submissions to the Standing Senate Committee on Human Rights. The Commission felt that “definition can limit the interpretation and evolution of a ground.” 34
With the removal of the definition from the bill, the full interpretation of “discrimination on the ground of genetic characteristics” will be left up to the Canadian Human Rights Tribunal and Canadian courts to determine. As noted above, clause 2 of the bill includes a definition of “genetic test,” but for the purposes of the Genetic Non-Discrimination Act only.
Clause 10(2) adds that if the ground of discrimination is refusal of a request to undergo a genetic test or to disclose, or to authorize the disclosure of, the results of a genetic test, the discrimination will be deemed to be on the ground of genetic characteristics.
The impact of the amendments to the CHRA is limited to the federal sector; therefore, the majority of commercial contracts that are entered into in Canada will not be affected, since these fall under provincial jurisdiction. However, the prohibitions set out in sections 1 to 7 of the new Genetic Non-Discrimination Act, which create criminal offences and penalties for genetic discrimination, will apply across the country.
When the current Bill S-201 was introduced, it included amendments to federal privacy laws, i.e., the Privacy Act and PIPEDA,35 to include “genetic information” under the definitions of personal information in order to provide explicit protections for genetic information. Daniel Therrien, Privacy Commissioner of Canada, recommended that the Standing Senate Committee on Human Rights remove the clauses that would have amended these laws, since they would “serve no useful purpose and would only add unnecessary confusion.” 36 The bill was amended accordingly at third reading in the Senate.
One of the issues discussed at length during the hearings of the Standing Senate Committee on Human Rights on both the current and predecessor Bill S-201 was the constitutionality of such a bill if it became law. The predecessor bill included an exception for insurance contracts valued at $1 million or more, or that pay a benefit of $75,000 per annum or more. Senator Cowan explained to the Committee why this provision was not included in the new version of the bill:
One provision in the previous bill referenced the insurance industry. That was actually an exemption from the prohibitions, which I included to try to assuage the concerns of the insurance industry regarding large insurance policies. It became clear last time that the inclusion of that provision was taken as evidence that the bill somehow in pith and substance was about the insurance industry. As I say, that was never my intention. So as to be very clear that the bill is not about the insurance industry or any industry for that matter, I’ve removed that provision. Now the word “insurance” does not appear anywhere in this bill.37
Insurance contracts are primarily regulated by provincial laws, as are insurance companies. The federal role in overseeing insurance companies is mainly limited to the oversight of banks, trust companies and federally incorporated companies that offer insurance policies and services.38 The federal legislature has passed laws affecting insurance or other business contracts further to its powers under the Constitution Act, 1867 through section 91(2) for the “Regulation of Trade and Commerce” or section 91(27) for the “Criminal Law.” 39 However, federal attempts to regulate insurance contracts have been largely unsuccessful when tested in Canadian courts.40
During its hearings on the current Bill S-201, the Committee received differing legal opinions as to whether the bill is a valid exercise of federal powers. Professor Bruce Ryder of Osgoode Hall Law School testified that it is not uncommon for laws to have overlapping jurisdiction between the federal and provincial legislatures, and in this case the bill is a valid exercise of federal criminal law powers.41 The contrary view was outlined in a legal opinion from Torys LLP, which stated that the bill lacks a “true criminal purpose” necessary for valid criminal legislation. The opinion asserted that instead, the bill infringes on the provincial constitutional powers over property and civil rights under section 92 of the Constitution Act, 1867, as the bill may be characterized as being directed at “the regulation of the provision of goods and services and the regulation of contract … or more generally about health.” 42 In reporting the bill back to the Senate, the Committee observed that
[t]he issue of genetic discrimination is multi-jurisdictional and the Committee urges that representatives of the Government of Canada meet with their provincial and territorial counterparts to address genetic discrimination in their respective jurisdictions.43
* Notice: For clarity of exposition, the legislative proposals set out in the bill described in this Legislative Summary are stated as if they had already been adopted or were in force. It is important to note, however, that bills may be amended during their consideration by the House of Commons and Senate, and have no force or effect unless and until they are passed by both houses of Parliament, receive Royal Assent, and come into force. [ Return to text ]
(606 kB, 4 pages), April 2010; and Canadian Institute of Actuaries, “Statement on Genetic Testing and Insurance (119 kB, 7 pages),” June 2014. [ Return to text ] (151 kB, 11 pages), 2011. The Concordat and Moratorium has been extended to 2017. See Association of British Insurers, “Insurance Genetics Moratorium extended to 2017,” News release, 5 April 2011. However, guidelines for the insurance industry in New Zealand state that “[i]nsurance companies can request applicants to disclose the results of any genetic tests.” See New Zealand, Human Rights Commission, Guidelines: Insurance and the Human Rights Act 1993, revised 2007. [ Return to text ] (407 kB, 1 page). [ Return to text ] (275 kB, 13 pages) it had obtained from Torys LLP dated 7 March 2016. [ Return to text ]© Library of Parliament