Some of you may have heard Senator James Cowan on CBC Radio’s The Current last week. In case you missed it, you can listen to the segment here.
I wanted to share an update on where we stand with genetic discrimination legislation.
Earlier this year, I had the opportunity to testify at the hearings for Bill S-201 and I was in Ottawa to attend the clause-by-clause discussion for the bill on February 19. As Senator Cowan indicated in the interview with The Current, Bill S-201 was gutted by the Conservative senators and while they left in the clause regarding the Labour Code with respect to employers not being allowed to use genetic test information, everything else was removed. This was disappointing to Senator Cowan, the Canadian Coalition for Genetic Fairness, the Huntington Society of Canada and our community.
Senator Cowan’s efforts over the last two years to prepare and table Bill S-201 took the genetic fairness conversation to a different level. His efforts raised the profile of this issue and garnered media attention. The hearings for Bill S-201 enabled many days of testimony that is now a matter of public record. Many experts and stakeholders have had their say. These are all steps in the right direction.
There is still a promising path going forward. The federal government continues to work towards realizing their commitment made in the 2013 Speech from the Throne to end genetic discrimination in Canada. As Chair of the Canadian Coalition for Genetic Fairness I continue to work with staff in the federal government to support a document that will present legislation at the federal level to address genetic discrimination. The intention of a bill will be to show leadership and set an example for the provinces to follow. We hope this will happen in the very near future given the election timing.
This is important to our families because this year will see the launch of clinical trials for five potential HD treatments, including highly promising gene-silencing drugs. Participation in clinical trials is critical to move treatments for Huntington disease forward. However, we recognize that some individuals at-risk for HD may choose not to participate in clinical trials, as we have not yet achieved protection of our genetic information in Canada. We, along with Senator Cowan, continue to advocate for genetic fairness for Canadians. Choosing to participate in clinical trials is a personal decision; while we continue to work towards ending genetic discrimination in Canada, we encourage those who are interested in participating in clinical trials to learn more and consult with their HD Resource Centre Director or Family Services Worker to understand all aspects of this decision.
In summary, the good news is that Senator Cowan continues to raise awareness and the federal government has promised to bring something forward during this session of parliament.
Senator Cowan continues to be a champion for ending genetic discrimination in Canada to benefit all Canadians. We are honoured to stand beside him to help make this happen.
Please stand with us and let your MP know that you support legislation to end genetic discrimination is Canada.
Chief Executive Officer