Implications of the Genetic Non-Discrimination Act

Possible issues and challenges

Implications of the Genetic Non-Discrimination Act

In 2013, the Alberta Court of Appeal upheld an order that a plaintiff who almost died in a house fire and sued the owners for negligence undergo testing for Huntington’s Disease. The order was made and upheld despite the Plaintiff’s evidence that she did not wish to have the test and that it would cause her severe panic, stress and anxiety. Members of the Plaintiff’s family had the disease, and the defendant insurer successfully argued that whether the Plaintiff had the gene was relevant to the assessment of damages. The ruling was cause for surprise and concern among experts.

Today a request for a similar order would be considered in light of the federal Genetic Non-Discrimination Act (the “Act”), which came into force in May 2017. The Act makes it a criminal offence to require an individual to undergo or disclose the results of a genetic test as a condition of provision of goods or services, or entering into or offering specific conditions in a contract. The Act also amended the Canadian Human Rights Act to add “genetic characteristics” to the list of prohibited grounds of discrimination, and the Canada Labour Code to prohibit federally regulated employers from requiring employees to undergo or disclose the results of a genetic test. 

The Act makes Canada the last of the G7 countries to enact legislation prohibiting genetic discrimination. It provides protection for individuals who may be at risk for genetic diseases and wish to undergo genetic testing for health reasons, but would have previously been concerned about their ability to obtain insurance if the results confirmed risk. The Privacy Commissioner of Canada and the Chief Commissioner of the Canadian Human Rights Commission welcomed the Act, with the latter saying that “[t]aking a test that could help save your life shouldn’t have to be a calculated risk.” The Canadian Life and Health Insurance Association (“CLHIA”), on the other hand, opposes the Act, and warned when the law was under consideration in 2016 that if insurers are prohibited from accessing the results of genetic tests, that the cost of term life insurance in Canada could rise by 30% for men and 50% for women. 

The Act was introduced as a private member’s Bill. Its constitutionality, specifically the question of whether the criminal prohibition is primarily an attempt to regulate the insurance industry and therefore within provincial jurisdiction, has been called into question by the CLHIA and by the federal government, which considered putting forward a reference to the Supreme Court of Canada. The government of Quebec has requested a reference on the legislation to their Court of Appeal – the case is yet to be heard. 

It is not clear how the Act would have affected the outcome of the 2013 Alberta case. Courts may be less likely to issue similar orders in light of the explicit human rights protection against genetic discrimination. If an insurance company cannot obtain genetic information as a condition of insurance, arguably they should not be able to obtain it in the course of assessing damages for any sort of claim. It will be interesting to observe as the legal, practical, and ethical issues surrounding the new law continue to unfold.

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