And I breath a heavy sigh, I have been so silent, so afraid to speak my mind, so worried that I would offend people who I deeply respect, but after much thought and a lot of kicking myself for not being strong enough to speak my mind I am going to take a stand, at least on this topic, and hopefully on many others that I do have strong convictions about. I am going to stop lurking around and stop trying to be so diplomatic, none of that is doing me any good, I will comment and post from now on with my head and heart in tact, knowing I am writing with true conviction and not with trepidation.
So what is this first topic that I have chosen to potentially take a comment lashing on, it is about Three Person IVF.
I recently read Sarah R. Cohen’s Post on this topic: “Three Person IVF in Canada – and why you aren’t hearing about it”. She writes: “So, when there is such potential benefit to this therapy, why aren’t we even having this discussion in Canada? Because it is very likely illegal. Pursuant to the always problematic Assisted Human Reproduction Act (the “AHRA”), section 5 (f) prohibits any person from knowingly altering “…the genome of a cell of a human being or in vitro embryo such that the alteration is capable of being transmitted to descendants.” Of course, the entire purpose of Three-Person IVF is to alter the sex cell of the mother so that such alteration is inherited, and not the cell with the inheritable disease.”
I am going to go back a bit, 2006 to be exact, and talk about a time I remember sitting in a room full of women who had already been through the fertility “system” as it would be here in Canada, women who had their babies, women who had been living with their choice to use donor gametes and some who had been fighting for the Government to start regulating the industry. They had marched with signs, written letters, made phone calls, collaborated and commiserated. They wanted change in our Canadian system, they wanted results. They wanted no more anonymity, no further genetic tampering, and no more compensation for would be sperm and egg donors.
At this time I was working on building a conference on Vancouver Island about New Reproductive and Genetic Technologies. I was a student at the time and came across the opportunity in a round about way through an interview I was doing for my Journalism Class. I myself at that time was just embarking on IUI using a Sperm Donor, and shortly after I starting working on the conference I got pregnant. Through this conference I met some fantastic, yet strong minded women. One of these women took me out to lunch. She knew my situation and she herself had a daughter born via sperm donor in the 80’s. She sat with me and in the nicest way she could tried to convince me to use a known sperm donor as opposed to an anonymous one. I did not tell her we had already picked and chosen to go anonymous, and at this time I also really did not care what she had to tell me, I was a women who wanted a baby and she had no bearing on my decision. I have since rethought that choice and written about it in many posts on my blog. My point is, these women had conviction and they had ideas, some of which I now agree with, and some of which I feel are set in another time, a time which does not adhere to today. I quote Sarah R. Cohen here again: “This is just another example of how the AHRA is failing us. The potential benefits, safety, and ethical implications ought to be debated and investigated, rather than silenced without so much as a whisper by a law enacted in another time.”
My pregnancy ended in a still birth at 5 months, my baby girl had Holo Anencephaly, which meant her brain was completely absent. Let me tell you did that day ever suck. We had wanted, waited, anguished and yearned for our baby. It took us years to get to the point of pregnancy and the loss felt like a joke. After all we had been through, we get pregnant with a baby with a very rare, or as the doctors called it a “One Off” diagnosis. It didn’t make sense. Our baby was sent off for genetic testing before we had her cremated and I also had testing done. Results, I was not the genetic reason for this to happen, but in our situation we could never test the donor. So we were advised to move onto another donor, and the clinic that we got our sperm donor from pulled him off the shelf, so to speak. But now here we were, devastated and starting all over again.
My reason for telling my story is not because I think that at the point in time that we were trying to conceive we could have had any leg up on genetics or preventing any potential of a repeat to our situation, but I sure as shit know that if I had an option that i knew was out there LIKE “Three Person IVF” I would have wanted it to be my legal right here in Canada to access it.
Sarah R. Cohen uses some very key words in her post “the always problematic Assisted Human Reproduction Act (the “AHRA”),”. On this point I could not agree more. We as Canadians have been failed by our government and their ability to create and maintain an active, responsive, thoughtful Agency to handle these laws properly.
In a previous post of mine titled “Why We Need Laws and Better Understanding of those Laws” that I wrote 2 years ago I wrote this, and I feel it is very representative to how i feel about the system today:
“Another Canadian example of how laws just can’t seem to be made, enforced or even decided upon, was the creation of the Assisted Human Reproduction Agency in 2006. I remember sitting with a group of women as we were having a meeting about an upcoming conference I was part of that dealt with New Reproductive and Genetic Technologies. When the news trickled into the meeting that this Agency was being created, there was a collective sigh of relief, it felt like this agency was so welcomed and would be just the ticket to whip our floundering fertility laws into place. However, as with most things government the road was to be muddled and long, or short as it turned out to be. ON october 1st of 2012 the Agency was shut down due to ‘budget cuts’ but in the 6 years they functioned, there was very little done, and as Macleans.ca reported: “Those who work in the field weren’t surprised by the AHRC’s demise: founded in 2006, the agency has been barren for years.” I can recall the numerous amounts of news media over the past 6 years about the agency and all of it was negative, and it seemed that the bottom line was that nothing was getting done. In a National Post article it was said: “agency finally opened its doors in 2006, but soon became a butt of complaints, seemingly achieving little of its mandate, while Prof. Baylis and two other board members quit in protest.” What more is there to say…”