On the 3rd November we attended in London the conference “10 years since the end of donor anonymity: have we got it right?”.
In 2005 the government of the United Kingdom decided to implement a change in the law so that humans who are conceived with the genetic material of a third person, get access to basic and fundamental information about themselves: knowledge on their biological parent(s) and siblings. All the speakers at conference agreed unanimously that it was the correct decision to abolish the anonymity of donors.
At first glance, the policy in Britain seems a perfect example that could help my country finally modernize but also humanize our policy. They seem to have everything: right to filiation, registry, DNA database, a huge support network, research, better guidance for children, parents and donors, donor families, …
At the conference we looked for the answer on the question ‘have we got it right?’. The answer on this question has many layers. Each speaker tried to answer by sharing the knowledge that was collected over the last 10 years.
We were told how precautious and negative the fertility clinics were when the government decided to change the law. Many of them claimed prophetically that it would end the possibility of intended parents to have children because no donors would agree to donate on the term of being identifiable.
Their fears turned out to be totally unfounded: not only was there an increase in the number of sperm donors, the amount of egg donors has also risen.
Due to the social tendency of single women and lesbian couples wanting to have children, a huge increase on demand took place. Because the demand is lager than the available national supply, 1/3rd of the sperm in the UK is imported. Most of it is imported from American sperm banks (in perspective: for many years Belgium has a decline in the number of donors. 60% of sperm that is used in my country is imported from abroad).
The HFEA (Human Fertility & Embryology Authority) notices an increase in the number of donor offspring that want to know who they descend from. There are also more and more donors that are changing their anonymous status into identifiable (men and women who donated before 2005).
But donor conception is more than just what facts & figures on trends and conducted research. It is an ethical debate, one that human society forgot to have before we started with such treatments.
Dr. Johanna Rose
The person who tried to answer the ethical part of the question was Dr. Jo Rose. Jo is a British donor conceived adult. She was conceived in the 1970s with some anonymous sperm from a sperm bank. When she was 8 years old she was told that she was donor conceived. That meant the realisation of an unknown biological father and potentially hundred half siblings out there.
The young woman got cancer, but nevertheless continued to search for him. When she almost gave up on life and hope of finding him, the prime minister of Victoria, Australia heard her plea and stepped in. He made it possible for them to get in contact.
From the moment they met there was mutual and true connection. Narelle would only live for 6 weeks after their first meeting. The little time she had left she would spend with him. She passed away gratefully but also with regret because of not having him sooner in her life. A part from the exceptional bound they shared, knowledge of hereditary diseases could have helped her cancer to be detected sooner so she could have lived longer, maybe even not die from it.
Jo then shared her own story: how being donor conceived had had an inevitable impact on her life, identity and family. She told us that when she became an adult she decided to file a lawsuit to challenge the fundamental injustice that has been done to her.
It was a lonely and hard battle which HFEA, the fertility industry, a lot of doctors, ethicists, professors but also parents organizations were hoping that the struggle would wear her down so that she would eventually give up.
The lawsuit lasted seven long years, as well as half of her savings, when the judge ruled in her favour. The ruling stated that ‘donor offsprings’ access to information about a biological parent goes to the very heart of their identity and make-up as people’ and that ‘an AID child is entitled to establish a picture of his identity as much as anyone else’.
This case led to a change in the law, which made the provision of anonymous donor conception in UK clinics illegal and let to the establishment of the gene library and registry service to address the identity loss and confusion already created.
In 2009 Jo Rose completed a PhD called ‘A critical analysis of sperm donation practices’. Her PhD gives an independent picture on what took and is taking place, analyses and formulates substantiated conclusions.
Her research shows that donor conception goes against the best interests of the child where the direct implications can be very harmful as well as inevitable. A potential trauma is inflicted, one that can affect a human being’s life and passed on to other generations.
Her conclusions are damning for the current British ‘ progressive ‘ policy:
- it is in the best interests of a child that it can raised by its biological parents or family. Donor conception generates a direct conflict with this specific interest because it deliberately withholds the child from being raised by both of its biological parents as well denying it the possibility to built a meaningful relationship with them.
- The right to lineage for donor conceived is endorsed in the law, but not automatically granted nor guaranteed. Parents can conceal its actual origins from the child. If a child is not told, there is a little change it will ever know. That is unfair and unjust. The government has a responsibility to grant the truth about their origins towards the children that were created through fertility treatments with donor gametes.
- Birth certificates do not reflect the truth about the child origins. Not putting all, incorrect or partly information on it, is a form of forgery.
- Donor conception comes forward due to the demand of intended parents with a desperate desire of having a child and an industry that makes money out of this. There is a huge conflict of interest due to the fact that the best interest of the child is inevitable undermined by it.
- The suffering of infertility or incapability to procreate is officially recognised. A huge support network has been established: either independent initiatives or by clinics. Some of those are financially supported by the government. On the other hand the suffering of donor conceived is still not being recognized, nor efforts were made to acknowledge this or actually to do something about it.
- There are millions of pounds/euro’s/dollars/dineros pumped into the industry: fertility techniques, counselling for parents, aftercare, choices, research … donor conceived in UK are only offered 2,5 hours with a counsellor.
- In other words: there is money to create donor conceived but when it comes to take any responsability or accountability for the direct consequenses that is being inflicted on them, hands go up in the air.
- No donor conceived are represented on the Board of the HFEA. Seats are assigned to professors, parents organization and people of the industry.
David vs Goliath
In contrast to the other speakers, Jo was the only one there defending a basic human right and addressing an injustice. She spoke from the heart and was there not because she happened to be working in a business that is linked to donor conception.
Some people in the room found her speech or interventions afterwards too emotional, sometimes a bit aggressive. But most of audience listened and understood the message: she made some good valid points. There were a lot of donor conceived adults, as well as parents, in the room who posed sincere and critical questions, but also expressed their support for Jo.
It is not often that donor conceived are invited to talk at conferences or debates. Often they are organized by the industry or organizations linked to that industry. People have difficulties to hear critical input that could point out the contradictions, conflicts of interests and the actual effect it has (or could have) on human beings that are conceived that way. Most of time they want to hear the ‘happily ever after’ and not ‘the inevitable potential devastating implications’ on the offspring. It would ruin the image that is forced upon us every time a leaflet of a perfect baby is handed over, when treatments must be advertised.
We experience the same thing in Belgium: the industry/clinics rather invite professors linked to the industry to talk about donor conceived offspring, rather then giving them the opportunity to speak for themselves.
It is absurd to notice that those who dare to speak up, or look critically at the policy are being treated poorly. Those who stand up do it most of the time completely for free: in their spare time, or take leave, invest their own money in the belief that a part from the occasional mistreatment, they will be able to make a difference for other donor conceived, donors and parents.
It is almost undemocratic that victims without any support from their government must fight this hard not only to address the issues, but simply to be heard.
On my way back home I took the Underground and I came across this poster:
-Big sigh – Yes indeed … their show must go on.
But at least I made some really nice friends and allies. Wait until if you discovered what we have in store.
p.s.: Jo wanted to start her presentation with the song that a German donor conceived, Kevin Staudt, wrote. She wasn’t able to get it played, nevertheless I want to share it with you https://www.youtube.com/watch?v=HuMMrcDY_84&list=RDHuMMrcDY_84#t=5