A Blog from our CEO – Bev Heim-Myers
January 6, 2016
Last year was a very exciting year for the Canadian Coalition for Genetic Fairness (CCGF) and increasing awareness about genetic discrimination in Canada.
In June, 2015, a Government Bill was tabled addressing genetic discrimination and acknowledging that genetic test information needs to be protected. Senator James Cowan also introduced Bill S201 in 2015. Bill S201 is the most robust, proposed legislative protection that we have had to date. Even though the Government Legislation and Bill S201 did not make it through before the election, it did create the opportunity for a thorough discussion by many experts during the hearings for Bill S201, which is all a matter of public record and an important step forward.
We are excited to announce, that after the election, Senator Cowan, re-tabled a genetic non-discrimination bill in the Senate, also titled Bill S201. Some changes were made to the new Bill, from the original version, to add clarity based on feedback received on the earlier Bill S201. This Bill is still the most comprehensive protection tabled and the CCGF looks forward to working with Senator Cowan to move this as quickly as possible through the Senate, to the House. Senator Cowan will discuss the new Bill S201 in the Senate in January.
More and more Canadians are becoming aware of genetic discrimination in Canada. Many, who have not been impacted yet, are shocked that Canada is the only G7 country that does not protect genetic information. In a world of personalized medicine and rapidly growing science, genome sequencing and how knowing our genetic makeup can influence early disease detection, treatment and prevention of disease, it is time to protect our genetic information from businesses, including employers and insurers. This is personal, private and complicated information that only belongs in the hands of those we wish to share it with. What could be more personal and private than our own DNA?
Let’s all stand together and end genetic discrimination in Canada in 2016. Let this be the year that Canada proves we are country that practices genetic fairness.
Please check out our new website at ccgf-cceg.ca/en/home. We are fortunate to have a volunteer work with us to refresh our site and add a new feature which includes a section where you can share your story about genetic discrimination. I invite you to check out the new site and participate.
Chair, Canadian Coalition for Genetic Fairness (CCGF)
CEO, Huntington Society of Canada