CEO Update
June 16, 2015
Genetic Fairness in Canada moved a significant step forward last Tuesday, June 9, 2015.
Bill C-68 “An Act to amend the Canadian Human Rights Act, the Privacy Act and the Personal Information Protection and Electronic Documents Act” was tabled in Parliament by Minister of Justice, Honourable Peter MacKay.
Bill C-68 endeavors to provide greater legal clarity on the protection of genetic results, offered by existing legislation.
Minister of Justice, Peter MacKay & Bev Heim-Myers, CEO of Huntington Society of Canada
After the Bill was tabled, Minister MacKay made his way to Children’s Hospital of Eastern Ontario (CHEO) to participate in the media release and, as Chair of the Canadian Coalition for Genetic Fairness (CCGF), I also had the honour of participating in the announcement to the media.
The Government of Canada has introduced legislation to protect genetic test information. They stayed within federal authority by proposing amendments to:
- The Canadian Human Rights Act – bringing clarity to the act, this legislation would deem discrimination on the basis of a predisposition to a disability, as inferred from genetic test results, to be discrimination on the ground of disability.
- The Privacy Act and the Personal Information Protection and Electronic Documents Act (PIPEDA) would specify that information resulting from genetic testing is among the types of personal information protected by these Acts.
Unfortunately, this legislation has been tabled too late for it to be passed before Parliament rises for the summer, and before the election in the fall. The legislation also does not deal with the insurance industry as insurance contracts and transactions are regulated at the provincial level.
What this legislation has done, however, is set a leadership example by the Federal Government. Since the Throne Speech of October 2013, the Federal Government has been working with stakeholders, including CCGF, to develop the legislation. All that work has led to Bill C-68. This Bill can be re-tabled after the election.
This critical step by the Federal Government is essential to engage the provinces in the genetic fairness discussion, moving toward genetic information protection legislation in all provinces and territories.
For now, the insurance industry still has the right to use your genetic information when making decisions.
Moving forward, it is imperative that provincial and territorial governments across Canada quickly pass complementary legislation to ensure discrimination is prevented and genetic test information is protected, for all Canadians across all jurisdictions.
Please stand with us as we make genetic information protection a reality in Canada.
Bev Heim-Myers
CEO Huntington society of Canada
Chair Canadian Coalition for Genetic Fairness