Thank you very much, Mr. Chair, and thanks to the committee for providing me the opportunity to speak to you.
I would like over the next few minutes to try to bring to life some of the discussions you have been having over the last few weeks, and to provide you with evidence that genetic discrimination is real. It's a frequent problem in this country that's affecting thousands and thousands of individuals.
I'm here today speaking not only on behalf of the 197 colleagues around the country who have sent a letter to all of you, but also on behalf of health care providers all over Canada, and maybe most importantly, I'm here to speak on behalf of every individual in Canada who is potentially at risk of being faced with genetic discrimination at some time in their lives.
I will provide you with three examples that address the issue that we are facing in the health care community.
I will give you an example of how genetic discrimination interferes with our ability to provide high-quality, safe, and best-standard clinical care to our patients, something that, in part, can be paralyzing for us as health care providers.
I will provide you with an example of how fear of genetic discrimination can interfere with our ability to perform the kind of research we need to actually move forward our standard of clinical care and continue to improve it, and at the same time think about the health care cost and try to keep it down.
Last but not least I will give you an example of the preventative aspect that the fear of genetic discrimination has, where without genetic testing, individuals cannot act upon certain knowledge and put measures into place that will provide protection or help to avoid a life-limiting or a life-threatening disorder.
Let me start with the first example—and it's sad for me to say that I've been in Canada for four and a half years now, and there are too many examples that I could choose from since I've moved here. I chose the example of a young girl who came to my clinic because she was thought to have a connective tissue disorder. The issue with that disorder was that she would be put at risk of her big blood vessel, coming out of her heart, the aorta, being torn, which would be a life-threatening problem.
Once I examined her, I discussed with the family the offer of genetic testing to find out whether she has a more severe or a milder form of this disorder. When I went through the consent process and we had to discuss the issue of genetic discrimination, both parents were very agitated about it. The mother was looking for a new job, and she said she was afraid that this might interfere with her ability to get that job. The parents did not have life insurance, and they said they did not want to go forward with the genetic tests. As a result, this child has to come to the hospital every three months to get an ultrasound of her heart, and is living with the fear of having the more severe form of the disease, but taking this fear over the fear of genetic discrimination.
I would like each one of you to put yourself for one minute into my shoes, knowing that I am not able to provide the right standard, best practice of care because the family declined to go forward with genetic testing. It has been paralyzing at times to me and to other health care providers to simply not do the job I learned and was trained how to do.
The second example is of a research study in which we were trying to answer the question of whether whole genome sequencing—the sequencing of your entire genome—would be a much better test to diagnose a medical condition, and also a much cheaper test for the health care system.
We approached about 200 families. I would like you to think for a moment about families who have had children for many years, most of them with very severe medical conditions, who are trying to look for an answer as to why this is happening to their child. When we offered them the chance to participate in the study, telling them, “There's a really high likelihood that we'll find an answer for you”, they were elated, excited, as you can imagine. Yet again, when it came to the consent process, over 35% of families elected not to participate because of a fear of genetic discrimination.
What that shows you is that, despite being on a search, a journey, to try to find an answer for “what is wrong with my child?”, parents elected not to go after that because of the fear that they would have issues with genetic discrimination. At the same time, it corroborated, somehow, that our study made it much more difficult to do this kind of research to actually prove that this is a better test, it's a cheaper test, and that's the test that we should offer the Canadian public if you are in a situation like this.
The last example I'm going to give you is about a young adult woman who has a family history of colon cancer. Her mom had colon cancer. She elected to do genetic testing, in order to find out whether she has a genetic form that predisposes her to this cancer.
When she went through the consent process, I don't want to repeat myself too much, again she was faced with the fact, “I can't get life insurance. What I will do is I will get yearly colonoscopies to screen myself so, in case something happens, I know that I can protect myself.”
The issue is, if you are young, you don't get yearly colonoscopies covered by OHIP if you don't have genetic evidence in order to actually be allowed to get that covered. In the end, she decided her health was more important than insurance issues. She did the genetic tests and was found positive and is in now in a situation to do yearly colonoscopies and is actually going to be able to prevent any kind of medical complication from happening.
While I'm not here to talk about industry or insurance issues, I would like everyone to consider that the preventative aspect and the preventative power of genetic knowledge gives many individuals the opportunity to take action to actually stay alive, healthy, as long as possible, and as a bi-effect, obviously, pay your insurance premium.
I hope I was able to bring to light some of the issues and, based on this, I'm going to go out on a limb and urge all of you to accept Bill S-201 without any amendments, in full, as it is, so every Canadian can have a better life, free of genetic discrimination for everyone.
Thank you.