Genetic discrimination laws: Where is Canada?

On Tuesday, I wrote about the use of evidence of genetic predisposition in Canadian disability law. In this post, I examine where Canada stands on genetic discrimination.

Federal and provincial governments in Canada have slowly expanded the list of characteristics that cannot be used to differentiate between individuals in a way that causes harm to the individual with that characteristic. However, only the federal government has expressly included “genetic characteristics” as a prohibited ground in human rights legislation. In 2017, Parliament passed the Genetic Non-Discrimination Act. The Act prohibits a person from requiring an individual to have a genetic test or to disclose the results of a genetic test as a condition of (a) providing goods or services to that individual, (b) entering into or continuing a contract or agreement with that individual, or (c) offering or continuing specific terms or conditions in a contract or agreement with that individual.

The real kicker for the insurance industry was (c). Essentially, that provision prohibits insurers from reflecting genetic predisposition risks – even those that are known to the individual because the individual has had genetic testing – in the premiums or terms (exclusions) offered to the individual.

After the bill was passed, Quebec took umbrage. It quickly moved to challenge these provisions of the Genetic Non-Discrimination Act as unconstitutional because it intruded on its jurisdiction to regulate the practices of provincially-regulated insurers and other affected businesses. The case is still pending before the courts. I personally wouldn’t place a bet on its outcome. The federal government has not fared well when trying to legislate in the area of private contracts. It seems the government has resorted to trying to criminalize asking for genetic testing to bolster its assertion of jurisdiction.

So where does that leave ordinary Canadians? The Genetic Non-Discrimination Act also amended the Canadian Human Rights Act to prevent discrimination based on genetic characteristics. The provision in the Canadian Human Rights Act protects individuals who voluntarily submit to genetic tests or disclose their genetic characteristics or submit to tests or make disclosure under duress. Discrimination because of a refusal to submit to or provide the results of a genetic test is deemed to be discrimination based on genetic characteristics.

The Canadian Human Rights Act provides protection when individuals deal with federal government bodies and federally regulated companies, such as banks and airlines. However, the vast majority of Canadian businesses are not federally-regulated. Moreover, provincial governments are not subject to this legislation.

Ontario Liberal MPP Natalie Des Rosiers introduced a private members’ bill (Bill 164) to amend the Ontario Human Rights Act to prohibit discrimination based on genetic characteristics (as well as immigration status, police records and social condition). However, the Liberal government suffered a humiliating defeat and it seems unlikely that the new Conservative government under Rob Ford will take up the cause of genetic discrimination. In Manitoba, an NDP private members’ bill (Bill 225) was brought before the legislature in May. Its fate is uncertain. So, the issue of genetic discrimination seems, at least for the time-being, to be one that is largely within the concern of private members rather than governments in Canada.

Does this matter? It is unclear. The evidence supporting a need for a broad law to protect individuals from discrimination on the basis of genetic characteristics is sparse. If the federal legislation stands, then the issue will be largely settled, except, perhaps, in the case of voluntary non-coerced disclosure. Those instances could possibly still fall into a grey zone unless provinces enacted amendments to human rights legislation similar to those in the Canadian Human Rights Act.

Genetic predisposition and the law

This spring, concerns that Canadians may be inadequately protected against genetic discrimination bubbled up again. The Canadian Broadcasting Corporation reported on a commentary in the Canadian Medical Association Journal warning of risks if Canada’s Genetic Non-Discrimination Act was overturned. The CBC story ran with the headline of “Door will open to genetic discrimination if act protection Canadians is overturned, genomics expert says.” The story referred to a legal challenge to the constitutionality of the Act that is before the Quebec courts. On Thursday, I will post more about the Genetic Non-Discrimination Act.

News reports and opinion pieces on genetics and the law tend to focus on the potential for insurers and employers to use genetic information to make decisions about individuals in a manner that advocates consider to be unfair. What is interesting is that scant attention is paid to how genetic information is already being used in the adjudication of legal rights. Genetic information is frequently used in the adjudication of worker’s compensation claims. What we see in those cases is a complex relationship between genetic information and legal fact-finding.

It seems that genetic predisposition can be used either as a sword or a shield. Genetic predisposition can be used to try to tip the balance of probabilities that some external act (e.g. exposure to raw milk at work) combined with a genetic predisposition (say to Chron’s disease) to result in a workplace injury (the manifestation of Chron’s disease) in order to argue for workplace disability benefits.

By contrast, genetic predisposition can sometimes be used as a shield to show that the plaintiff’s injury was from a separate cause. The defendant doesn’t need to compensate the plaintiff for the negative effects of a pre-existing condition (e.g. genetic predisposition of hip problems) that casts doubt on whether there is a connection between the harm (hip injury) and the individual’s employment because the individual would have likely experienced that injury irrespective of the individual’s employment.

A great summary of cases can be found in a 2013 article published in the McGill Journal of Law and Health titled “Understanding the Use of ‘Genetic Predisposition’ in Canadian decisions.” In that article, the authors suggest that evidence of genetic predisposition was used to “fill in the connection” where the causal factor leading to the injury is not clear. What the authors found in the case of workplace disability claims is that genetic information is often used to tip the scales one way or the other where other evidence casts doubt as to the link between the workplace exposure or event and the worker’s condition. Genetic predisposition either assists in justifying refusal of the claim based on the possibility that the condition had an alternative cause (genetics used as a shield) or to support the plausibility of the connection (genetics used as a sword). The authors state:

“This occurs because scientific uncertainty in light of the multiple risk factors and mechanisms of disease, combined with the general principle that the burden of proof rests with one of the parties on a balance of probabilities, render it sufficient (and economical) to resolve the issue of disease causation without thoroughly examining the genesis of the condition in question. The resolution of claims in this way leaves open the possibility that genetics will stand in for “hidden causes” of disease.”

I did a quick test to see if there has been any change in the last year in how genetic predisposition has been used, following the methodology in the 2013 study. The 2013’s findings seem to continue to be relevant.

It should be noted, however, that the authors were concerned with the “geneticization of health and disability”, which leads to overemphasizing genetic factors and ignoring or reducing attention to other socio-economic determinants of health.