Written speeches - UN - 19 Nov 2019 - Geneva
Introduction by Sonia Allan and Steph Raeymaekers (r)
Sonia: My name is Sonia Allan. I am here today in my personal capacity as a public health, law and policy researcher who has been examining the regulation of assisted reproduction, donor conception and surrogacy for decades. Together with Stephanie Raeymaekers, a donor-conceived person and advocate for donor-conceived rights, we would like to present this session to connect you with the experiences of, and impact upon, people born as a result of such practices. we would like to take this opportunity to recognise that while donor-conception and surrogacy practices have become increasingly widespread, governments in most countries of the world have failed to enact laws that protect the rights of children born as a result--including but not limited to, rights that relate to knowing one’s identity, family, and not being bought or sold.
Moreover, I would like to draw your attention to the fact that debates on how to regulate assisted reproduction and surrogacy, are often absent of the voices of donor-conceived or surrogacy born people, or only include them as an afterthought. Today, we introduce you to their voices, and implore you to remember the saying ‘nothing about them, without them’. Let us seize this opportunity to listen to people born as a result of donor-conception and surrogacy and hear from them what they know is in their best interests.
Steph : Yes, and in doing so, you will see that the breaches of our fundamental rights cause many complications, issues and bewilderment.
To help you understand better we have built the presentation around several statements. Each one will be explained by personal stories of donor-conceived and surrogacy born people who joined us here today to give you an insight into their lived experiences.
We travelled from all corners of the world: Australia, UK, Europe and America at our own cost and time to be heard. We’re all here because we think it’s too important not to be.
Please try to listen and reflect on some of the core issues we endure when decisions are made at our expense and without consulting us. If you want to talk to us afterwards, don’t hesitate.
This being said, I would like to give the floor to Gee Roberts. Gee is a donor conceived born out of surrogacy – the only person here in our group who had knowledge and contact with her extended family all her life. Her talk will be followed by many others, who will show you what happens when this is not the case, when commodification occurs, and when our voices are not heard or even considered.
Statement 1: What if you were born via surrogacy and have known and had contact with your biological birth mother and siblings all your life? Gee Roberts (r)
It was 1997, my parents had been trying for a child for 10 years, and were now in their mid-40s. They decided to begin their surrogacy journey with COTS, a not for profit agency in the UK. They created their profile which was sent out to potential surrogate mothers, and was chosen by a woman called Sue. When I asked Sue about this decision, she said it was my dad’s goofy smile that made her choose my parents as her next couple to help. Sue had 1 son of her own via a sperm donor, and had already completed 1 surrogate. My parents and Sue met and got on well, so began their traditional surrogacy journey. After conceiving in their first cycle, they went through the pregnancy with regular contact. I was born in 1998, and having been carried by Sue for 9 months I was taken home by my parents, Jennie and Jerry.
I have known about my origins from the moment I was born, and my parents used to read me a book called ‘my mummy’s tummy is broken’ to explain Sue’s role in my story. I have been fortunate enough to have regular contact with Sue and my half siblings all my life. Every year we would meet up as one big extended family and I believe that this family model of ongoing kinship and friendship has been the foundations for the journeys which our families have been on together. It is also something which makes me feel very proud to be a surrogate born person.
More recently, I made contact with more of Sue’s family and this is something which has been important in the formation of my identity as a surrogacy born person. Whilst I recognise that many surrogacy born and donor conceived people do not have this opportunity, I feel very fortunate to be able to have such open contact with my surrogate family. I believe that the only reason this was possible was the honesty which my parents gave to me from the moment of my birth, and I will forever be grateful to them for this.
Statement 2: What if you know you are donor-conceived but don’t know who your biological parent(s) or siblings are? Matty Wright, Betty Wright and Albert Frantz
Betty: Hi we are Beth and Matty, We grew up believing we were full-siblings, the bio-children of both our parents. We were told at 16 & 18 that we were both donor sperm conceived and later confirmed via DTCDNAT to be half siblings. What is our relationship now? Who are we?
I didn't know know where my idiosyncrasies and mannerisms came from. This made me feel "wrong" because my family did not share many significant aspects of my personality. They did not understand the other half of me. I believed these idiosyncrasies were character flaws, but now I KNOW they're inherited, as I have since met my paternal biological family and have seen them reflected back at me.
Matty: I grew up and developed an identity. When my DC status was disclosed to me, I didn't know who I was anymore. Not being able to access my bio family leaves me asking myself...
Who am I? And a harder question, am I brave enough to find out?
Growing up donor conceived, I didn't feel a familial connection with my father, but I was told I definitely had one. I believed my parents, and I learned not to trust my feelings. Next week, I will meet my paternal biological family. I can see my past, but how I will grow from here is unknown. I can't predict or control the effect that meeting them will have on my identity development, and that is scary.
Albert: I grew up in a multiracial family with three adopted siblings from Asia. Our family harboured two deep secrets. The first was that we were torn apart by violence.
The second secret was my own identity. I'm literally not who I say I am. Not until I was turning 30 did I find out why my father took most of his rage out on me, sometimes leaving me unable to go to school for days at a time. Former neighbours finally told me: "He's not your father." I was never supposed to know I'm the product of reproductive technology. No records were kept.
It is only thanks to technology unforeseen 45 years ago that I was able to find my true identity. After 14 years of searching for the proverbial needle in a haystack, DNA testing and putting the puzzle pieces together, just last year I found my missing family. I was never supposed to know my Jewish identity or that I have a birthright to Israeli citizenship. I was never supposed to know my four amazing half siblings. I was never supposed to know my own father. I was never supposed to know he even exists. (How is that in the best interest of the child?) When we met it was almost as though we'd known each other our whole lives. I discovered my musical talent in my late teens and became a concert pianist despite total lack of support. I moved to Vienna, Austria; incredibly, it turns out half the family was from Vienna. My father is a hand surgeon—we have the same hands!—and my grandmother was even a pianist! I'm incredibly grateful that my new family has welcomed me with open arms. I feel a sense of belonging for the first time in my life.
I was never supposed to know my own identity or half of my immediate family. This is a grave injustice and a direct violation of Articles 7 and 8 of the UN Convention on the Rights of the Child. It is high time to honour the Convention, to eliminate all layers of secrecy and shame—to "open source" identity. It is my sincere hope that future children of reproductive technology will be entitled know their full families throughout their lives, and that both social and biological parents will be fully recognised as this is the only way to fully honour both nurture and nature. Identity should not literally be a corporate or state secret. It must be considered a fundamental human right.
Statement 3: What if the government is complicit in keeping your identity a secret and your birth certificate is a lie? Catarina Almeida and Damian Adams (r)
Catarina: Hello everyone. My name is Catarina and I found out I was DC 8 years ago. It was a relief: finally I had all the answers of why I was so different of my Family.
My biodad was my mother's OBG. A Young Angolan medical doctor who went to Portugal to finish his medicine degree. All his roots where there, in Angola, and I have Always wanted to go to that country devastated by 40 years of civil war, without know why. But something inside of me knew: my roots where there.
Now have a legal problem: Angolan Nationality Law says that os eligible to have Angolan citizenship all those who has an Angolan progenitor. I do have, but the country I was born says there is no link between my and my biological father, because I have a lie in my North certificate.
But is worse than that: when I was born, in 1984, there was no law ruling this Kind of situation, but now the law is clear: there is no legal link between the offspring and the donor. It is legal to lie on the first document of a child.
Donor Concepcion is not just a problem of personal identity: it can hide several legal issues with different countries involved. I don’t know what is going to be the decision of the Angolan court, but one thing I know: I am am Angolan with my heart and soul and I won’t give up on my identity.
Damian: Hello, my name is Damian Adams and I was conceived in 1973 from donor sperm in Adelaide, South Australia. Growing up I had difficulty forming my identity. I had many similarities with my mother and her family. But I couldn’t be more different from my Dad and his family both in looks and personality. Every time I looked in the mirror I didn’t know half of the features staring back at me as I had no biological paternal heritage in my life.
This is what my face looked like to me. (put on mask)
Another part of my identity is this document, my birth certificate. (hold up certificate) However, mine is a lie. The man listed is not my biological father as it is for most people. I am not descended from a long line of Adams’s as the certificate indicates. So I went to court to get mine corrected to reflect the truth. While I did not know who my biological father was, I wanted that section left blank or changed to unknown.
After 4 court appearances representing myself and up against not 1 but 3 lawyers from the attorney general’s office, I lost my case. I felt like a second-class citizen, as donor conceived people are the only people who cannot challenge paternity.
My birth certificate is a fraudulent document created by a government that does not want to record the truth. I do not need a piece of paper to tell me to love the man who raised me.
And as for the man who is my biological father, after 30 years of actively searching I finally met him 2 months ago. It was like I was looking at myself 30 years from now. The similarities in looks and personality were more than mind blowing. They were life changing.
I now have my face, my identity.
(take off mask)
Well, most of my identity as my birth certificate still isn’t worth the paper it was printed on.
(rip up certificate)
Statement 4: What if you discovered you had more than dozen siblings? Joey Hoofdman (r)
My name is Joey Hoofdman. 32 years ago I was born and raised in Rotterdam, the Netherlands. Since March 2017 I know that I am donor conceived. Before that discovery I always lived under the assumption that the father who raised me was my biological father.
However, I always had the feeling that something didn’t add up in my family. I can best describe it as uncomfortable feeling you feel deep inside. It’s a feeling of being different, feeling alone and lonely because you cannot place it or really define it.
After a fierce legal battle, I uncovered that the doctor who treated my parents due to fertility problems, was actually my biological father. When the news hit me for the first time, I was very angry but also sad. It made me realise that I am not the product out of love, instead I am a product out of lies and commercialisation.
Yet, the truth also generates a form of relief, which gives me some peace of mind. Because now I know the truth and I can continue my life. Still there is one big question that remains: how on earth could this happen?
Between March 2017 and now I’ve found 75 half siblings who live all over the world. There could be more.
I am happy to know them and I wouldn’t want to miss them for the world. It’s nice being able to reflect myself in others, nevertheless I feel like I am the result of a human mass production.Because we are with so many, it is almost impossible to bond with all of them, or be able to provide enough support in processing this. Those 75 different human lives, each with their own unique story, have become almost abstract. The absurdness is for many of us the new normal.
I blame my biological father for having crossed a medical-ethical boundary by deciding to use his own sperm and conceiving so many of offspring, however. The reason why he was able to do so was because there was a lack in regulation, and insufficient supervision from the government. As a result, he thought he was untouchable.
It’s important we learn from the mistakes that have been made. We can only achieve this by making agreements on international level, so we can prevent this from ever happening again.
The past has shown us that we cannot rely on the so called good intentions of the fertility industry or even the good intentions of parents nor governments. Please try to ensure that from now on the interests and fundamental rights of children truly come first and no longer are at the bottom of the priority list.
Statement 5: What if your biological mother/father/sibling has a medical condition you know nothing about? Jo Lloyd and Joanna Rose (r)
Jo Lloyd: Good morning.My name is Jo.
have a congenital heart defect called “Tetralogy of Fallot” which is hereditary in a small number of cases. My parents always told me and my doctors that there was no history of heart issues on my paternal side. Aged 54, I discovered that I was donor conceived. My father was Mr Anonymous. Amidst the shock of discovery was the trauma of knowing I had been giving inaccurate medical history all my life. This was incredibly scary.
My cardiologist was horrified and arranged for me to undergo genetic testing to ensure that I was NOT a carrier of the genes known to cause Fallots. Access to accurate medical history doesn’t just affect the donor conceived individual; it affects their descendants.
LACK of access to medical history (as Jo Rose is going to tell you) – can kill.
Joanna Rose: Hello and thank you. I don't have the time here to list all the ways in which we are medically disadvantaged but I hope to honour the plight of two people who are important to me.
Alison Davenport is from the same clinic as me. When she was suffering from leukaemia she needed, more than ever, to be able to contact her paternal family. She wanted to ask if they could help save her life by giving her a bone marrow transplant.
Appealing for legislative reform she said: "You can't help thinking that anyone born via donor conception... is part of some lost generation, which the medical profession and the government are hoping will die off without needing to be dealt with... But I'm still here and I need this information – not just for mental closure, but to fight my cancer”.
Alison died while still obstructed from contacting those relatives. Laws were unaffected in the UK as her plea fell on deaf ears.
Narelle Grech was a close friend of mine and many of us here. She spent 15 years trying to access information about her father and kin, along with knowledge of her medical history. She appealed to the authority that held her sealed records saying "I believe the truth will set me free...and I ask for access to my records for this reason". It was not until Narelle was diagnosed with stage four cancer and was in the last 6 weeks of her life her, that she was finally allowed the information that enabled her to find and meet her father.
She died at just 30 years old, learning too late of a genetic predisposition to bowel cancer on her paternal side.
There is now a law in Australia that overturns donor anonymity in her state: Narelle's Law. Hopefully this will help many, including her 8 unknown half-siblings who are likely be ignorant of their donor conception and genetic predisposition to bowel cancer.
These are two preventable deaths of donor conceived people but there will be more. By design we live with medical and genetic misinformation and ignorance, impacting our physical and mental health. Our best interests were not protected by these designs. Alison's question still resonates: "Did they not think of the implications for the children they created?”.
I honour your courage and memory Alison and Narelle.
Statement 6: What if you wonder if you are related to everyone who looks like you or the person you are dating? Hayley Wilson and S. Wilson (r)
Hayley: My name is Hayley. I’ve discovered I have somewhere between 25 and 40 donor siblings, who I’m not legally allowed to know. But I was lucky, at least there were some records that told me how many I had.
Yet thanks to DNA testing, I discovered a couple of my donor conceived siblings -- that is, from the same donor raised in different families -- and have been totally stunned by the similarities we share. Not only in appearance, but in interests, aptitudes and hobbies. I discovered that I was studying at university with one of my brothers -- in the same field of study, at the same time.
One of my sisters collects the same obscure thing as me, pieces from May Gibbs an iconic Australian author. One of my other sisters has the same dream retirement plan as me, to have a nature conservation property. It’s uncanny. They aren’t strangers at all.
Being denied knowledge of even my siblings names has left me feeling haunted. I find myself looking for them in strangers' faces as I walk past them in the street, on the train, even in Switzerland. They could be right next to me and I’d never know. I feel disempowered, like I’m not allowed to call this feeling of longing to meet them what it really is, grief. And it feels unconscionable that we could be kept from one another for legal convenience.
Some of my siblings feel like they can’t date without asking their partner to do a DNA test. What an imposition and burden on them, that they cannot live their lives like everyone else due to the risks burdened upon them. Can we say donor conception is ethical for those conceived this way when such a burden exists?
S.: Hi my name’s S., and I come from New Zealand.
All my life, people have said things like “There's a girl who looks just like you”, and it still happens all the time. I grew up, I went to school, I went on a lot of dates, I had some serious relationships, and eventually, I got married. I was three months pregnant when I found out I was donor conceived.
I thought I knew who I was, so I thought I knew who my baby was, but she was one quarter a stranger, with an unknown biological grandparent. My husband could have been my half-brother. Half the medical history I'd been filling out on forms was meaningless. My ethnicity was different to what I thought it was.
My husband jokes about marrying under false pretences and asking for his money back.
Now, every time someone says to me, "I know someone who looks just like you," I get an adrenalin rush. I ask for all the details, where they saw them, if they know their name. I wonder if any of the girls people told me about were actually my DC sisters, or if any of the men I kissed were my DC brothers.
I'm searching for half-siblings who might not even know they’re donor-conceived. Their names are on record, but the record keepers won’t give me this information, so the only way I can find them is through detective work. I’ve gone through all the official channels, and so far, I’ve had the opportunity to meet two half-sisters.
So, if you know someone who looks like me, please let me know.
Statement 7: What if you felt like part of a living experiment in which your human rights don’t matter? S. G. and Courtney du Toit (r)
S: Good afternoon, my name is Sebastiana,
What does it mean for one’s life to be a “living experiment”?Well, it begins with the fact that as a Donor Conceived Person you are bombarded by instances which stretch the boundaries of acceptability in regards to human rights.
In my personal experience, I grew up in an Italian-American family and spent half of my life in the US and the other half in Italy, the Mid East and the Marshall Islands. I am an only child with no siblings of any kind (a rare DCP reality in the donor conceived community). I found out I was donor conceived almost 20 years ago, at 23 years old.
The social experiment started to reveal itself once I was able to unveil the truth. Through consumer DNA testing, I cracked a seemingly impossible endogamous puzzle by triangulating distant relatives, the also using med school yearbooks of students from the year I was conceived in. I found him (who I call now I call biodad and have a great relationship full of amazing similarities. I discovered that I have Jewish heritage from him. Tomorrow, I am going to visit my bio great-grandmothers shtetl as she escaped Europe prior to the Holocaust.
Importantly, my biodad and I discovered that we were both lied to by the fertility doctor. After both of us presenting him with independence requests, the doctor deliberately kept us in the dark regarding such things as amount of identity, offspring and siblings and also vital medical information.
I was created as a solution for other people’s needs. I feel like I am part of a propagation program, similar to breeding apple varieties. Without acknowledgment of our rights as humans, we Donor Conceived People are just commodities in a twisted experiment.
Courtney: My name is Courtney and I was conceived in Melbourne in 1976.
My parents wanted a baby, and doctors had a method of providing them with one. Nobody needed to know about the method of my conception, least of all me. My mother’s doctor received great accolades for being a pioneer in the field.
An industry sprang up from what appeared to simply be the altruistic practice of solving a problem and fulfilling a desire.But nobody considered the implications of having a child grow up in a culture of shame and secrecy – that I might perceive a sense that things weren’t quite right, that I would feel a sense of disconnection, a need to fit in, to prove my worth, to constantly seek approval and acceptance.
Nobody thought to prepare my family for the difficulties we would face and the profound effect it would have.
I found out I was donor conceived when I was 21 years old by reading it in my medical file. It was less shocking than you may imagine. It made sense. But I wish my parents had the courage to tell me themselves.I wish that my parents, and the doctors who facilitated this, had considered what this would really mean: being deprived of half of my medical history, half of my family history, and of the choice to know my biological parent.
My sense of identity was shattered and it took 20 years before I could begin the process of piecing it together accurately.6 days before I turned 40 I found my biological father. Once again it made sense, and once again it involved complexity and loss.
What worries me deeply – enough to fly across the world – is that this is still happening: creating children with the express intention to sever a fundamental biological connection purely for the profit and needs of others.
Conclusions by Myf Cummerford and Sarah Dingle (r)
Myf: We are both donor conceived, created by science under ethically bankrupt guarantees of anonymity for the sperm donors.
Sarah: We note that despite decades of profiteering in the global trade in sperm, eggs, embryos and wombs this is the first time the United Nations is hearing from a group of the human beings created by these practices. We are glad to be here. But we should have had a voice, and your attention, right from the start.
Myf: Whilst my biological father's file from 1977 was miraculously preserved, I was denied access to it. I was prepared to tell my story which appeared with my photo on the front page of a national newspaper and as a result he contacted me.
Sarah: The medical records of my conception were deliberately destroyed by one of Australia’s largest public hospitals, along with the records of at least eighty but possibly hundreds of others. No one has been held to account.
Myf: If the people conceived using donor conception and surrogacy want to know their biological and birth families (and we know that they do, as is their right) then we must inquire: What is the justification for denying a child, a human being, the right to their own identity and ethnicity, the right to know and have contact with their biological family members?
In the clash between the desires of prospective parents, the fertility industry (for it is an industry) and our human rights - as we have heard here today it is rare that our rights and interests prevail.
Sarah: There is no right to have a child under international law. Children are not goods or services that the State or businesses can guarantee or provide. They are human beings with rights.
The UN Special Rapporteur on the Sale of Children stated last year that commercial surrogacy usually results in the sale of children. Well, it’s not just commercial surrogacy. You have heard here today from donor conceived people who were bought and sold.
Myf: So when we are considering donor conception and surrogacy we must be starting from the position that these practices are not in the best interests of children where we know that if someone is conceived in this manner, their rights as stated under the convention, will be at the very least impacted if not negated entirely.
Are there, ever, any circumstances in which donor conception and surrogacy can be allowed?
Sarah: This can only happen if it is legislated like open adoption. Gee's ability to know family is lucky – it is not hers by legal right. For donor conception and surrogacy to be ethical, all children must have a legal right to know their biological parents, all of their biological siblings, and also their birth mother whether or not she is also a biological parent. They have a right to know that none of those parties were paid, compensated or otherwise rewarded. This is non-negotiable.
Myf: There is no jurisdiction in the world which currently upholds and protects these rights. Consequently, we say that wherever in the world a state allows donor conception and surrogacy today, it is unethical. It should be strictly regulated akin to an open adoption - or it should come to a halt. Further it is galling to know that principles, guidelines and legislation are often drafted by people who know so little about our lived experiences. You would never make indigenous policy without consulting indigenous people. It is fundamentally offensive to think that many who sit here today and elsewhere do not take a strong stance to prohibit commercial practices that commodify and dehumanise us. And not only us, as the nature of these transactions often also involve disadvantaged gamete donors or surrogate mothers, some of whom are trafficked.
Sarah: Children have a right to know their biological parents and siblings and to seek contact with them. Not through detective work when they’re adults but right from the start. Anything less than this serves doctors, commissioning parents, big business… everyone but the child.
Myf: Children also have a right to expect that by law if they are created from third party gametes they will have no more than ten biological siblings, and ideally much less, and that they will know who each and every one of those siblings are.
Sarah: Governments must enshrine the biological origins of their citizens in birth certificates - the one document that parents cannot conceal or alter.
Myf: The international community has a duty to prevent cross-border gamete trafficking, the exploitation and commodification of children, baby factories, and to encourage national government to uphold their own laws.
Sarah: Finally, the medical profession should go back to first principles: first, do no harm. They must put the rights of the child first. And they have a duty to tell all adults the most important truth about fertility instead of urging them into fertility treatment: if you want to have a child, you need to start as early as possible. Only then can you give yourself the best chance of avoiding the vortex of IVF, third party material, surrogacy, lies and exploitation.
Myf: Of course the heartbreak of wanting a child is something we can all empathise with however supporting and allowing this international, commercial, exploitative industry to grow unheeded is at best misguided. Expensive, quite often harmful and ineffective so called fertility treatments are not the solution.
Sarah: Every child has the right under the UN Convention on the Rights of the Child, which we celebrate here today, to identity, to family, including biological family, and to not be bought or sold. Every child has the right to be heard. We are the products of this industry and we have not been heard or respected. If we are included at all, we are an afterthought -- a tick the box exercise so that governments and business can progress with their documents and proposals. But we are the voices of surrogacy and donor-conceived people. We are now grown, and our voices are stronger. We know what is in our best interests and what is not, and we hope you are listening.
Please come and find us to speak with us afterwards about donor conception and surrogacy - we would love to talk to you.
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