With many recent advances in technology, testing can disclose information about people’s health that was not available even a few years ago. For example, genetic testing can reveal that a person has a gene mutation that causes or increases the risk of an inherited disorder. This information may be very important to the individual, but may also cause concern if employers or insurance companies obtain that information and make decisions about hiring or coverage based on genetic information.
Genetic testing involves the analysis of person’s chromosomes, genes or gene products (i.e., proteins) to identify traits, such as parentage, ancestral origins, genetic conditions or predisposition to genetic diseases (Julian Walker Genetic Discrimination and Canadian Law Library of Parliament September 16, 2014 online: http://www.lop.parl.gc.ca/content/lop/ResearchPublications/2014-90-e.html (“Walker”). The information obtained can help people and their caregivers start appropriate treatment or adopt lifestyle changes to minimize the harm of the genetic condition. It may also help to select patients who can undergo gene therapy (Walker).
On the other hand, genetic information may be used to discriminate against someone, especially in the provision of services like insurance and/or in employment. There have been reported incidents of Canadians being discriminated against by insurance companies on the basis that they have the potential to be affected by an inherited genetic condition (Joseph Hall, Study finds genetic discrimination by insurance firms, The Toronto Star, 9 June 2009; and CBC, “Genetic Discrimination,” The National, 12 February 2012 cited in Walker at note 7). The Senate Standing Committee on Human Rights held hearings and released a report in October 2014 and witnesses testified that some medical patients are declining genetic testing because they fear being discriminated against by insurance companies (Walker).
Governments in other countries, such as the United States, Australia, France and the United Kingdom, have passed legislation to specifically address genetic discrimination. Canadian law does have insurance and privacy legislation that seeks to limit improper access to or use of personal information, but Canada has no specific laws to protect against genetic discrimination.
…it is considered preferable to have explicit protection for genetic characteristics stated in human rights legislation.
Existing provincial and federal human rights legislation often protects against discrimination based on disability. It is possible to interpret “disability” to include genetic predisposition and to expand coverage for genetic discrimination on this basis. However, rather than relying on a possible interpretation of a term in human rights law, it is considered preferable to have explicit protection for genetic characteristics stated in human rights legislation.
Federal human rights legislation applies to federally regulated entities, such as banks. There have been a number of proposals to amend federal human rights law to include genetic characteristics. In 2010, two private members’ bills were introduced proposing to add “genetic characteristics” to the Canadian Human Rights Act (CHRA), but these both died when the 40th Parliament was dissolved. In the 41st Parliament, Bill C-445 was introduced, again proposing to add “genetic characteristics” to the CHRA. This bill also did not pass. At the same time, Bill S-201 (originating in the Senate) was introduced. In addition to adding “genetic characteristics” it also included amendments to the Canadian Labour Code, which provided that an employee would not be required to take a genetic test or to disclose results of genetic tests. Finally, Bill C-68, the Protection Against Genetic Discrimination Act, was introduced in the 41st Parliament, 2nd Session, but did not become law before the Second Session of Parliament ended in August 2015.
Bill S-201, An Act to prohibit and prevent genetic discrimination, was re-introduced and passed by the Senate on April 14, 2016. The Senate can introduce and pass bills, which then must also be passed by Parliament. It received second reading in the House of Commons on September 20, 2016. It is hoped that it will soon be passed into law and come into force.
Bill S-201 has four parts.
…genetic information may be used to discriminate against someone, especially in the provision of services like insurance and/or in employment.First, once passed, it will enact a new statute, the “Genetic Non-Discrimination Act”, which prohibits requiring someone to take a genetic test or to disclose the results of a genetic test. Further, it prohibits anyone from collecting or using the results of a person’s genetic test without the person’s written consent as a condition of providing goods or services to the person, entering into or continuing a contract with the person, or offering or continuing particular terms or conditions in a contract with the person. Physicians, pharmacists and other health care practitioners who are providing health services to an individual are exempt from this aspect of the bill, as are medical, pharmaceutical or other scientific researchers about an individual who has participated in the research.
While earlier versions of the bill appeared to focus on the insurance industry, it now focuses on conduct rather than particular industries. The focus on a particular industry (i.e. insurance,) could result in the legislation being found unconstitutional, as it would pertain to property and civil rights, and the authority to pass laws on these topics would fall under provincial legislative power.
Second, the bill would make changes to the Canada Labour Code and will prohibit federal employers from taking disciplinary action against an employee because the employee refused the employer’s request to take a genetic test or to reveal the results of a previous genetic test.
Third, the bill will amend the CHRA to include “genetic characteristics” as a prohibited ground of discrimination.
Fourth, the bill will amend federal privacy legislation to make it clear that “personal information” includes information derived from genetic testing.
Breaking the law could be a hybrid criminal offence, punishable by indictment with a fine of up to $1million, imprisonment for up to five years or both; or a summary conviction offence, punishable by a fine of up to $300,000, imprisonment for up to 12 months or both.
Currently, there are approximately 48,000 genetic tests available. The result of such a test does not necessary mean that the person may develop a disease or condition, only that he or she might. However, those individuals can take preventive action, such as actor Angelina Jolie, who had preventative surgery to reduce her chances of developing breast and ovarian cancer. People fearing genetic discrimination and therefore choosing not to undergo testing, will not have the opportunity to take preventive action.
Because the proposed legislation will only apply to federally regulated employers and service providers, it is important that the provinces seriously consider adding genetic characteristics as a protected ground, so that people discriminated against on the ground of genetic characteristics by provincially regulated employers and service providers will also be able to obtain remedies.