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An exciting step forward for genetic fairness in Canada

A Blog from our CEO – Bev Heim-Myers
March 15, 2016 

As we start our first week into daylight savings time, in many provinces, I wanted to shed light on another initiative I have been working on.

On February 17, I had the honour of presenting to the Senate Standing Committee on Human Rights regarding Bill S201, An Act to Prohibit and Prevent Genetic Discrimination.

I was joined by several executives from the Insurance and Actuarial Industries. As Chair of the Canadian Coalition for Genetic Fairness (CCGF) I continue to represent 18 member organizations and many individuals to end genetic discrimination in Canada. Worried about profits, the insurance industry continues to fight for what they perceive as their right to have access to your personal, private and complicated genetic test information. Employers are also wanting access to your genetic test information and have started adding genome sequencing to employee benefits packages. Who knows where genetic discrimination will stop.  Will children not be allowed in school because of a perceived future genetic disease?

Senator Cowan’s Bill S201 will be a deterrent and make the use of genetic test information, without the written consent of the individual owner of the DNA, illegal.

On Wednesday, March 9, the Senate Standing Committee on Human Rights took Bill S201 through a clause by clause discussion. With amendments, Bill S201 was carried to 3rd reading which may happen after the Easter break.

This is an exciting step in the progression of Bill S201. As Canada is still the only G7 Country that does not protect genetic test information explicitly, or provide a deterrent to engaging in genetic discrimination behaviour, this is one step closer to people living in Canada being protected.

Senator Cowan, his Senior Policy Advisor, Barbara Kagedan, and other team members have been tireless advocates of protecting genetic test information.  Senator Cowan first introduced a bill, to end genetic discrimination, back in the spring of 2013.  He continues to collaborate to present the best, and fairest for all stakeholders, protection possible.  It was clear during the clause by clause discussions that the Senators applaud the efforts of Senator Cowan and agree in principle that genetic test information needs to be protected.

The Canadian Human Rights Commission and the Office of the Privacy Commissioner are also in agreement with protecting genetic test information.

It will be a great day in Canada when the needs of the individual, to have their genetic test information protected, override the wants of businesses to use that information against individuals. Please continue to let Senators, your Members of Parliament at both the Federal and Provincial levels know that legislation to protect genetic test information in Canada is important and a right for all individuals, that is long overdue.

To find your Members of Parliament visit: http://ccgf-cceg.ca/en/about-ccgf/

Bev Heim-Myers
Chair of the Coalition for Genetic Fairness and CEO Huntington Society of Canada


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