A Word from our CEO
By Bev Heim-Myers
April 7, 2014
Last week was a promising week in our quest to make genetic fairness a reality in Canada.
On Tuesday, April 2, 2014, Bill S 201 made it past 2nd reading in the Senate and has been directed to Legal and Constitutional Affairs for debate. You may recall that Bill S 201 is the most comprehensive genetic non-discrimination bill that we have had to date. The bill was first introduced in the spring of 2013 and re-tabled in October 2013, by Senator James Cowan. We are now at the point where experts will be called to inform our decision makers regarding the merits and concerns with this bill. We still have a long way to go but this was a significant step in our journey.
Another significant step was in The Speech From the Throne, read this past fall, in which the government identified “ending genetic discrimination by employers and insurance companies, based on information gathered from genetic testing” to be a priority for this government. Subsequent to The Speech from the Throne commitment, I have had several meetings with the appropriate parties to continue to move the dialogue forward.
On Thursday, I was joined by two experts, Dr. Ronald Cohn, Chief of Genetics, Sick Children’s Hospital and Dr. Yvonne Bombard, a researcher who has published several papers on genetic discrimination, especially as it relates to HD. As a clinician scientist, Dr. Cohn has seen firsthand the impact that the fear of genetic discrimination has on a parent’s decision regarding whether or not to have their child genetically tested, for the purposes of early detection and treatment of potential diseases. Dr. Bombard has gathered and published evidence providing proof that genetic discrimination, and fear of genetic discrimination, is a reality in Canada. We met with policy representatives from the Federal Ministries of Justice, Labour, and Health to discuss the negative impact of genetic discrimination on Canadians. We also met with Senator Cowan and his team to discuss the next steps with regards to Bill S 201.
It was a very busy week that included participation in discussions with a variety of concerned individuals and policy makers, committed to ending genetic discrimination in Canada. Together we can make this happen. Help us keep this concern front and centre for our politicians and decision makers.
Let your MP, MPP and Senator know that it is time we recognized that genetic information is complicated, personal and private, and should only be used as the individual owner, you and I, want it to be used. Click here for sample letters to send to your MP, MPP and Senator.