Thank you very much.
First of all, thank you to Dr. Forbes and the CMA for taking a very reasoned and proactive stance on Bill S-201, and thanks to all of you for the privilege of addressing this committee on behalf of the Canadian College of Medical Geneticists.
We are the doctors who diagnose and treat patients with genetic diseases. In preparing this statement, we asked ourselves what can we possibly tell you that you have not already heard from informed individuals such as MP Oliphant, Senator Cowan, and Bev Heim-Myers, from esteemed researchers, and also from very learned constitutional experts.
We can speak as doctors across our country who care for patients with genetic conditions. We can say very clearly that genetic discrimination and fear of discrimination are not just theoretical, as some have argued. We can say that it truly changes behaviour. We can say that it influences patients' decisions in clinics across the country every single day. We can say that it sits in the clinic room between us and our patients when they consider the pros and cons of a predictive genetic test for hereditary cancer, for example.
We can say that it lingers forever when a patient declines a test that had a 50% chance of demonstrating that she does not have a hereditary cancer syndrome and therefore might not require the imaging surveillance that her doctor will be compelled to recommend for the rest of her life. We can say that it sometimes wastes health care dollars, and we can say that it prevents some of our patients' family members from ever seeking or following through with a referral to our clinics. I know that Dr. Forbes has had that very experience.
We can say that it deters patients from participating in the very research that might further our understanding of their genetic condition. We can also say that genetic testing is not always valid and not always straightforward, because our interpretation of test results is in its infancy and is evolving rapidly over time. Sometimes, genetic testing mislabels individuals with genetic conditions or predispositions to a particular disease, when in fact they are healthy and will remain healthy.
For all of these reasons, the CCMG unequivocally supports Bill S-201. We commend the senator and his policy adviser, Barbara Kagedan, for their tireless work, which has recently been recognized internationally in the form of an Advocacy Award from the American Society of Human Genetics.
You have already heard that we are the only G8 country that does not enjoy this protection, and I find it ironic that this initiative is celebrated by another country before it has even been enshrined in law here in Canada.
Our first message, which is not new to you, is that we must act now, not months from now and not years from now. The complete sequence of the human genome was drafted in 2000. Just over 15 years later, we have already linked 5,000 of the estimated 20,000 genes to so-called rare human genetic diseases, and we know of thousands more gene variants that influence predispositions to common health conditions such as diabetes and heart disease.
Those numbers are rising every single day. Genetic testing has become a critical tool in many disciplines of medicine, not just to diagnose disease, but also to guide the selection of personalized treatments. That includes imaging surveillance and medications.
This is the very promise of the human genome that Francis Collins spoke of in his historic announcement of the completion of the human genome project just over 15 years ago. It is incredibly empowering, both for patients and for their doctors, but as long as there is no legislative protection for genetic information, patients are vulnerable, and if our experience to date is any judge, many of them will forgo the benefits of genomic medicine. I feel very strongly that we have a duty to change that.
Our second message is that you are our patients. Most of you, at some point in your lifetimes, will have the ability to determine your susceptibilities to common diseases through genetic testing. Would you prefer to have this information to yourselves and act upon it to mitigate your risks, or would you prefer that it is also in the hands of your insurers or your employer? How comfortable would you be in subjecting yourself to a genetic test without this protection? How comfortable would you feel if I asked you to provide a sample of your saliva to a genetics laboratory before this legislation has passed?
Our third message is that, yes, it is important to alter the Canadian Human Rights Act to include the words “genetic characteristics”. Canadians believe that it is equally as abhorrent to use one's genome against an individual as it is to use their race or their disability. Canadians believe in protecting our most vulnerable, whether they are disabled by birth or by accident.
These are values we embrace, and our human rights act should reflect that, but that is not enough. Without the other two pillars of the stool, the non-discrimination act and the amendments to the labour code, there will be no deterrent to insurance or employment discrimination on the basis of genetic test results.
I've read the transcripts of these hearings. I know that you have already heard that the Office of the Privacy Commissioner has two studies that do not predict that the insurance industry will be harmed by this legislation, and that similar legislation in other countries has not hampered that industry. You have already heard from three of four constitutional expects that this bill is soundly within the purview of the federal government.
You have already heard that the provinces have not raised concerns about this legislation, despite being given ample opportunity to do so. You have already heard that Ontario is moving to support the concept of protection against genetic discrimination with Bill 30, which would amend the provincial human rights act, and that you have heard that Bill 30 is designed to work in partnership with Bill S-201—they need each other.
The CCMG urges you to do the right thing for Canadians and endorse this bill without amendments.
What I want to be able to say to my patients is that you don't have to worry about this anymore. You can make the choice that's best for you and for your family without fear. You can base your decisions on sound medical evidence.
Thank you very much. We appreciate the opportunity to offer our perspective.