The Supreme Court of Canada has ruled to uphold a federal law forbidding third parties from demanding people's genetic information.
The Genetic Non-Discrimination Act makes it illegal to require genetic testing or the disclosure of previous results as a condition for an employment contract, insurance policy or any other legal agreement. It also prevents the sharing of genetic information without consent – although there are exceptions for physicians and researchers. Breaching this law could incur a $1 million penalty or five years in prison.
'Parliament took action in response to its concern that individuals' vulnerability to genetic discrimination posed a threat of harm to several public interests traditionally protected by the criminal law … It did so to safeguard autonomy, privacy and equality, along with public health,' said Justice Andromache Karakatsanis in the lead judgment. 'The challenged provisions fall within Parliament's criminal law power because they consist of prohibitions accompanied by penalties, backed by a criminal law purpose.'
The Supreme Court decision comes after years of debate over the bill, which originally received approval in 2017 (see BioNews 892) despite opposition by the Prime Minister and cabinet. Following the decision, Jody Wilson-Raybould, then Minister of Justice, raised 'serious concerns over the constitutionality' of the law.
The Canadian government system includes both federal and provincial governments, each with specific legislative powers set out by the Canadian constitution. At times it can be unclear where the power lies when creating laws, particularly when related to new technologies. In situations like these, the government may refer questions concerning the constitutionality of legislation to the courts for determination, as happened in this case.
In 2018, the Quebec Court of Appeal unanimously found the law unconstitutional, but the Canadian Coalition for Genetic Fairness challenged this ruling in the Supreme Court, which heard the appeal last October. The appeal was allowed by a narrow 5-4 majority last Friday when five of the nine Supreme Court judges ultimately held that the Act properly fell within federal jurisdiction to legislate on matters of criminal law.
'Taking a genetic test that could save your life should not come at the price of you not being hired or promoted, or not being able to adopt a child or to travel, not being able to get insurance or access child care' said Marcella Daye, a senior policy adviser at the Canadian Human Rights Commission.