As the broad availability of genetic testing has mushroomed over the past two decades, privacy and potential discrimination concerns associated with testing results has increased. Until recently, Canada lagged behind other countries in this regard with no specific national legislation. That changed in 2017 with the enactment of the Genetic Non-Discrimination Act. The Act was quickly challenged on constitutional grounds, but earlier this month a divided Supreme Court of Canada upheld its validity.
The law underwent a remarkable parliamentary journey featuring opposition from successive governments, lobbying against the bill by the insurance industry, passage in the House of Commons despite objections from then-Justice Minister Jody Wilson-Raybould, and a court challenge in which the government supported the effort to declare the law invalid. Senator James Cowan, who was the lead proponent of the legislation, joins me on the podcast to discuss what prompted him to take on the issue and the unlikely path of Canada’s genetic non-discrimination law.