BETHESDA, MD - The American Society of Human Genetics (ASHG) applauds yesterday's passage of S-201, the Genetic Non-Discrimination Act, in a 222-60 vote by the Parliament of Canada's House of Commons. Because of minor technical changes, the bill must still be passed by the Senate.
"At a time when genetic testing is increasingly being incorporated into clinical care and researchers are performing analyses of human genomes on an unprecedented scale, it is critical that the genetic information of patients and research participants alike is not misused," said Nancy J. Cox, PhD, president of ASHG. "If approved by the Parliament of Canada, S-201 will help ensure that all Canadians can benefit from genetics-based clinical advances without fear of genetic discrimination."
If it becomes law, the legislation will protect individuals from being required to undergo a genetic test, or disclose the results of a test, as a condition of acquiring a good or service or entering into a contractual agreement. In addition, it will prohibit employers from requiring employees to undergo genetic testing or disclose testing results, or from taking discriminatory action against employees who refuse to undergo testing or reveal results. It will also amend the Canadian Human Rights Act to prohibit discrimination on the ground of genetic characteristics.
"Passage of S-201 will help ensure not only that an individual's genetic information remains private, but also that this information cannot be used in a way that harms them," explained Derek Scholes, PhD, ASHG's director of science policy. "Such protections will reassure the public that they can participate in genetic research or undergo a genetic test without worrying that the findings will be used to discriminate against them."
ASHG has long supported S-201 and other measures protecting against genetic discrimination. In November 2016, nearly 200 Canadian members and their colleagues signed on to a letter to Parliament supporting the bill. Earlier in the year, the Society awarded its 2016 Advocacy Award to the Canadian Coalition for Genetic Fairness and former Senator James Cowan, LLM, QC, for their efforts to prevent genetic discrimination. And in the United States, ASHG spent 13 years advocating for the Genetic Information Nondiscrimination Act, which was enacted in 2008.
"I'm very grateful to the genetics community for their support of S-201," said former Senator Cowan. "They were critical in helping to explain to Canadians the need for such a law, and their vocal support throughout the process was instrumental in showing the public and Parliament why it was so important," he said.
"As an international society that represents genetics professionals in many countries, we recognize the need for protections against genetic discrimination worldwide, and we welcome the establishment of such protections in Canada," said Dr. Cox.