June 2015 – Bill C-68: A Good First Step for Genetic Fairness But Not Far Enough

On June 9th 2015, the Government of Canada tabled Bill C-68, An Act to amend the Canadian Human Rights Act, the Privacy Act and the Personal Information Protection and Electronic Documents Act. The legislation was introduced by Minister Peter MacKay during a June 9th news event at the Children’s Hospital of Eastern Ontario (CHEO).

In short, the Bill aims to protect Canadians and their personal information against its potential misuse by amending the Canadian Human Rights Act to state that discrimination on the ground of a predisposition to disability that is inferred from the results of genetic testing is deemed to be discrimination on the ground of disability. The bill also amends the Privacy Act and the Personal Information Protection and Electronic Documents Act to specifically include information resulting from genetic testing.

Though a good first step in bringing forward meaningful legislation on genetic fairness, there was no commitment made by the Government regarding regulating the insurance companies to ensure that disclosed genetic information cannot be misused to make unfair decisions regarding premiums and overall eligibility. Genetic information should be used to better understand the prevention, treatment and management of diseases to allow Canadians to live longer, healthier lives; it should not be used by insurers to make business decisions that may prevent individuals from receiving appropriate and affordable insurance coverage.

To date, Canada’s current laws enable insurance companies to discriminate based on perceived disability or the prospect of future disability. In Canada, we cannot legally discriminate against race, gender or disability, but we can against DNA.

The Parkinson community calls on the Government of Canada to take the appropriate steps in amending Bill C-68 so that private industries, such as insurance companies, cannot misuse our genetic information.

Parkinson Society Canada believes there is an opportunity for the Government to show leadership by enacting legislation that fully protects Canadians against all forms genetic discrimination and ensuring that both private insurers and employers comply with it, legal rights that are currently enjoyed by many of our international Parkinson’s community members.

If you are interested in moving genetic fairness and other issues affecting the Parkinson’s community forward, consider becoming a Parkinson’s Ambassador in your riding. Whether you are a person living with Parkinson’s, a caregiver to someone living with the disease, or simply want to help with the cause, you can be a champion in your community by being the voice for Canadians with Parkinson’s. As a representative of the Parkinson’s community, you will meet with your local MP/MPP/MLA to discuss Parkinson’s issues. We will provide you with the training and support you need to ensure that you are fully prepared to meet with your local policy maker. A modest time commitment from you can make a big difference for a person with Parkinson’s. If you’d like more information, please contact us at: advocacy@parkinson.ca.