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DONOR – Dwight Jones, Canada
As a donor I feel I have no right to deny any information to any party around their conception. Like doctors, I feel a duty to "above all do no harm", and clearly we have been part of a data-deprivation exercise that has caused many donor conceived people untold grief, and continues to do so.
No person, organization or legislator has any right to withold such data from offspring conceived by any method, nor to allege that this is being done to "protect the donors". In truth, "donor anonymity" was/is to guarantee "parent anonymity" and doctor disengagement.
Donors must be free to waive such "protection" individually, at minimun, lest they forever be accomplices to further distress.
DONOR – Mark Lyndon, United Kingdom
"Donating gametes is fundamentally different from any other kind of organ or tissue donation. Sperm and egg donors are the genetic parents of the children born, and this has significant medical and psychological implications for the donor-conceived. It might be very convenient for some clinics, parents, and donors to pretend that this doesn't matter, but most donor-conceived people seem to disagree. Their views matter most in this, as they are the ones most directly affected by it.
I was a sperm donor in the UK in the early 80's, and they've had a permanent register of all clinic donor conception since 1994 as well as a voluntary registry for conceptions before then. They also banned donor anonymity in 2004, and other countries to have banned donor anonymity include the Netherlands, Sweden, Norway, Finland, Switzerland, Austria, New Zealand, and Australia.
I believe that in twenty years time, it will be considered scandalous that anonymous donation was ever allowed in north America. Whether or not historical donor conception records are opened up, it is simply unacceptable for existing records to be destroyed."
DONOR – Open-Identity Donor - The Spermbank of California
My thoughts on identity release are that firstly: Records must be preserved at least until the courts decide and any appeals are filed and adjudicated. These records are invaluable. On a very practical level: Even donors who do not currently wish to have their ID's released may at a later date change their minds. I could even imagine that this
information may have life saving implications: Bone marrow donor compatibility is a good example: What if a sperm donor needed a bone marrow donor? That would change my mind if I were not already a proponent of ID release. On a deeper, philosophical level: I could envision a sperm
donor just having an epiphany: A sudden realization that WOW! There are these people that I have had a huge impact on out there, that have been half-way supplied with the very blue print of who they are and that came from me and I wonder...Who are these people, how did they turn out, and
what part of that had to do with the essence that came from me? What great things are they bringing into the world? What is it that I am a part of?
All of us donors did something a long time ago. The impact and ramifications will out last us all. I thought of myself as a catalyst: That small, but important element that helped begin something that through a domino series resulted in a much greater outcome. I am just curious as all
hell what that outcome is. My belief in the ultimate triumph of the goodness in life and the benevolence of the universe makes me yearn to see:
So what the hell happened?
But maybe that's just me.
PARENT – H.M. —Parent through donor conception
I am the parent of a beautiful child conceived through donor conception.
Several things happened to me during the process that left me disillusioned with a system which creates, and insists on perpetuating, a conflict of interest between my child and I. I began to research the field of reproductive medicine and donor conception, and was horrified to discover there is no meaningful legislative protection in Canada for children whose origins began with donor conception. The contrast in legislative protection for children who are adopted is shocking, surprising, and wholly unacceptable.
How could our legislators, in good conscience, enact legislation (AHR Act) that allows people to be deliberately created, but forever deny them half of their genetic and medical histories impacting not only themselves, but others for generations to come? I know of no greater set of injustices within our North American society than those that affect donor conceived people and their families.
Legislation in many countries now requires that the donor's identity be released to the child. This is so in Sweden, Norway, Sweden, Germany, Austria, the Netherlands, Switzerland, UK, Netherlands and some of the Australian States. Some argue that bans on donor anonymity would result in a reduction in the number of donors available. This is a a surprising argument. We are not talking about making widgets in a factory (where the supply must meet the demand). Human lives are being created, and these human beings have inherent needs, and rights under the Canadian Charter of Rights and Freedoms and the UN Convention on the Rights of the Child that must be recognized. Surely our legislation must be based on principles which protect the rights of the people created above all else, and let the chips fall wherever they will on donor numbers.
A significant overhaul of federal and provincial legislation in this area is long overdue, and must begin in earnest now. Legislation must fully and clearly be based on the all important principle that the needs of the people created through assisted reproduction must without question, and without exception, be protected as the first priority. Principled legislation, compliant with our obligations under International and Canadian law, must be made the top priority by our governments.
PARENT – Susan Henry
My daughter, who was conceived by DI, was born in 1989. It was very frustrating to me that I was denied all information about the biological father's background; I didn't even know what colour hair he had or how tall he was, let alone any medical information.
As it turns out, that lack of knowledge could have deadly consequences.
At age 13, my daughter was diagnosed with a medical condition that can be genetically related. (She had symptoms starting at age 3, but they were casually dismissed for years as "typical" childhood stomach problems.) She has celiac disease - a gluten sensitivity - which is found in 10%-15% of first-degree relatives, and which can cause severe health problems if left undiagnosed. I have met older adults who almost died as a result of this condition going undiagnosed; at the time my daughter was diagnosed, she was severely anemic. It's an odd condition, in that it can have very serious effects, yet sometimes be present with few, if any, symptoms. It's quite easy to deal with, if you know you have it, yet cancer and life-threatening malnutrition are just two of the possible outcomes if it's left undiagnosed.
I am not asking that my daughter have access to her biological father's identity (although that might have its own separate psychological benefits). What is crucial is that the other children conceived via my daughter's biological father be advised that they may have this condition, and be tested for it. These days, all that is required is a blood test. It's such a simple thing.
The lack of access to any information in the records means that my daughter's half-siblings will never learn this information. It seems appalling; people could become very ill and possibly even die as a result of lack of access to the records. Is complete anonymity worth that price?