Update on Genetic Discrimination
The past few years have seen significant developments in the field of genetic testing, which has led to exciting possibilities for identifying, understanding, preventing, and treating illnesses. At the same time, advances in the understanding of genetics can also result in the discriminatory treatment of individuals. In the employment sector, for example, employees have experienced new forms of discrimination, as it has become more common for employers to require employees to take genetic tests and/or disclose the results of such tests. On May 4, 2017, the federal Genetic Non-Discrimination Act (GNA) came into force, seeking to address these concerns, and becoming the first Canadian law dealing with discrimination based on genetics. In addition to this, in Ontario, Bill 30 (Human Rights Code Amendment Act (Genetic Characteristics)) is currently being debated.
What is genetic testing?
The goal of genetic testing is to identify genetic changes, mutations, and/or differences that might be associated with the development of certain disorders. The results of a genetic test can confirm or eliminate the possibility of a suspected condition or help to determine the likelihood of an individual developing such a condition. While genetic testing used to be limited in nature and prohibitively expensive, individuals now have access to nearly 49,000 different genetic tests for as little as $100.00. This means that it is becoming increasingly common for individuals to know their genetic makeup and to be aware of predisposition to certain illnesses. However, it is important to understand that the identification of a genetic mutation or anomaly does not necessarily guarantee that the individual will develop a particular condition
What is discrimination based on genetic characteristics?
The growing availability of genetic information has led to new ways in which people can experience discrimination in various sectors, including employment and insurance. Genetic discrimination has been a big concern in the context of insurance. Specifically, an individual may be charged more for insurance on the basis of what is revealed by a genetic test, or may even be denied coverage altogether.
In the employment sector, discrimination on the basis of genetic characteristics can occur in several ways:
- Reprisals in the workplace based on failing to take a genetic test or for failing to disclose the results of a genetic test;
- Reprisals in the workplace for disclosing a particular genetic characteristic after taking a test;
- Refusals of service after failing to take a genetic test or after having disclosed the results of a genetic test.
Anti-Genetic Discrimination Legislation (Federal)
In May 2017, the GNA came into force, originating as a private member’s bill introduced in the Senate by former Senator Jim Cowan. The Act made several changes, making it an offence to require an individual to undergo genetic testing or to disclose test results as a condition of entering into a contract and/or providing services to that individual. The GNA also amended the Canada Labour Code to allow employees to refuse genetic tests or to disclose genetic information, and to prohibit employers from taking reprisals against employees who make such refusals. The Canada Human Rights Act was also amended by the Act to add “genetic characteristics” as a prohibited ground of discrimination.
We asked Peter Engelmann, a lawyer at Goldblatt Partners LLP, to outline the main concerns about genetic discrimination in the employment sector and how it will be impacted by the new legislation:
Although the new law is to protect against individuals being forced to have genetic tests and also to disclose the results of the genetic tests, I think it is much more likely that employers will do the latter and not the former.
Whether they ask employees if they have had tests or simply become aware of it through some form of employee disclosure, such as talking in the workplace or through social media posts, employees, particularly those working in safety sensitive jobs or working with expensive equipment, may get asked for disclosure.
Alternatively, job action may be taken simply because an employee has divulged the results of a test they have taken and afterwards their employer has taken precautionary steps.
So far, these cases are rare, and I hope that the passage of legislation federally and provincially will help keep it that way.”
Status of the GNA
To date, this new legislation has yet to be interpreted in jurisprudence. It should be noted that shortly after the GNA was passed, Justice Minister Wilson-Raybould announced that she would request Cabinet to refer the Act to the Supreme Court of Canada to be debated for constitutional issues. To this date, this has not yet occurred. However, the government of Quebec has challenged the legislation as infringing on provincial jurisdiction. The question is whether the “pith and substance” of the GNA is to protect the health of Canadians or to regulate industries, such as the insurance world. This reference will be heard by the Quebec Court of Appeal in the next few months.
Peter Engelmann discussed the likely outcome of the challenge and the potential impact of the decision:
It is hard to say with a constitutional challenge. The law was amended to focus on Parliament’s general criminal law power and all specific references to insurance were removed.
Having said this, the insurance industry was effective in its efforts to raise the spectre of the federal government encroaching upon provincial jurisdictions and convinced the Quebec government to bring the challenge.
I expect the case will go to the Supreme Court of Canada either way, and expect that the court will not be unanimous.Given the importance of the protections and the general approach to dealing with compelled tests and or disclosure of results, I believe the law will eventually be upheld.
The province of Ontario is in the process of passing legislation which is similar to the GNA. Bill 30 received its second reading on November 3, 2016, and was subsequently referred to the Standing Committee on Justice Policy. The Bill is currently at committee stage.
If passed, the legislation would add “genetic characteristics” as a prohibited ground of discrimination to the Ontario Human Rights Code. This would protect an individual’s decision to refuse to take a genetic test or to disclose the results of a genetic test.
Personal Genome Project: Are Genetic Tests Less Reliable than We Thought?
Genetic testing is increasingly being relied upon; however, the results of a recent study on DNA, the Personal Genome Project,* serve as a cautionary reminder that genetic testing may not be as reliable as we had believed it to be. The study found that many genes previously thought to cause disease most likely do not, and also discovered new genetic anomalies that are strongly associated with health conditions. These findings show how much ambiguity remains in the field of genetic testing.
Peter Engelmann confirms that studies like the PGP have significant implications:
I think this underscores the need for protection for genetic discrimination. While there is much that has been learned by research in the Genome Projects that have been undertaken to date, genetic mutations and traits are only predictors, and it is important not to conclude a particular disease and/or symptoms will result. These results reinforce that.
* The study was conducted by 53 researchers at the Hospital for Sick Children and the University of Toronto and published in the Canadian Medical Association Journal in February 2018. It sought to analyze DNA as thoroughly as possible, and studied the genome sequences of 56 Canadian participants.