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Enough of Nuffield – let's stop sidelining donors

13 May 2013
By Ben Saer
Business Manager of Your IVF Journey
Appeared in BioNews 704

In November 2012 the British Columbia Court of Appeal ruled that donor-conceived children should not be allowed to trace their genetic parents. The court overturned an earlier decision which allowed access and called donor conception 'harmful' to the child. The appeal court rejected this, saying enforced access amounted to state intrusion. Anonymity, guaranteed to the donor at the time of conception, was rightly respected.

It’s a shame that respect isn't afforded to donors in the UK. As a prospective parent of a donor-conceived child (she's due this July), I strongly disagree with state intervention on donor access. So strongly, in fact, that we had our donor-egg IVF treatment abroad – in one of many EU countries that protects donor anonymity. Ethical opinions, it seems, vary nationally.

The recent Nuffield report makes two disappointing recommendations. First, that anonymous donation should not be reintroduced. Second, that the state should encourage those who donated pre-2005 to come forward. Both positions are obstructive to donors, past and present.

The ending of donor anonymity in the UK cut supply overnight. Many couples were deprived of the chance of a child, since infertility treatment is about timing, cooperation and convenience. Long waiting lists serve nobody. As demand for donor eggs outstripped supply – as it does today despite the compensation hike – fertility care took a backward step. Many couples voted with their feet – like us – and travelled to another member state for quicker, cheaper treatment. They found non-existent queues for donors, a lack of moralising and superb standards of care, stringently protected by EU law.

That's not quite the picture of donor conception in the UK. What should be a private matter between the parties – donor, parent(s) and child – has become overtly politicised. Subjective ethical views have been handed down from on high, shaping the law. The 1989 Children Act describes the welfare of children as 'paramount'. Few would question the thinking behind that – the welfare of donor-conceived children is paramount too. But the right to seek out a genetic parent, whether contact at 18 ends well or badly, will not be paramount to the welfare of every donor-conceived child. It would merely be desirable in certain cases. That doesn't justify statutory access for all.

Donors are heroes. Without them, donor-conceived children wouldn't exist. Yet the rights of donors have been oddly marginalised in the debate. By saying donors, pre-2005, should consider ending the anonymity given to them, Nuffield does them a great disservice. They may of course have only donated on account of the anonymity they were promised. Hectoring them to come forward is intrusive and probably illegal, if Article 8 of the European Convention on Human Rights is anything to go by. And forcing would-be donors into counselling and bringing in their partners before they sign is like saying: 'you better know what you're doing'. It reminds us of the response we got from our local council when we contacted it about adoption. It was distrustful, suspicious and bureaucratically heavy-handed – and that was just the first phone call. Our enquiries ended there.

There are countless websites, some with charitable status, asserting, mostly without evidence, that donor-conceived children face an identity crisis later in life. They often sentimentalise the rights and second-guess the feelings of children they will never know. To us, good parenting will alleviate most emotional difficulties. Nuffield is right to endorse the telling of children from an early age about their genetic origins. It's also right to highlight the importance of donor medical information when needed. But it missed a trick by objecting to donor anonymity. We've seen no conclusive evidence that the mandatory revealing of a donor's identity is paramount to a child's welfare. The proposition may sound reasonable but, to us, it's ethically flawed. And look at the result. Donors have run a mile, families have suffered and the advancement of medicine has been hindered.

To fix the problem, we call upon NICE, National Institute for Health and Clinical Excellence, to recommend that donor-egg IVF is provided on the NHS to everyone who needs it. We ask that the law is changed to allow donor anonymity once again. We suggest the statutory formation of an independent body, separate from the National Donation Strategy Group, to provide a service that brings donor-conception parties together only if the donor consents. The donor must be free to withdraw her consent at any time.

Responsible parenting and donor rights are more important, in our view, than the current vogue for transparency. The Canadian court rejected the assertion that donor-conceived children should have the same rights of access as adoptees. Everyone knows that donor conception is different to adoption. The UK should follow the Canadian example. Donor conception needs a reality check and a repealed law, not more ethical debate.

See the Your IVF Journey website for more information
19 August 2013 - by Ari Haque 
Jason Patric, an actor best known for his role in 'The Lost Boys', has appeared before California lawmakers in support of a bill that would allow sperm donors to apply for parental rights....
8 July 2013 - by Antony Starza-Allen 
Families are complicated and no two are the same. It is often said that assisted reproductive technologies (ART) challenge traditional family models. But what has received less attention to date is how these 'new families' navigate a complex thicket of social, legal and policy norms...
20 May 2013 - by Olivia Montuschi 
In addressing egg-donation dad-to-be Ben Saer's points in his BioNews article, it is hard to know where to start. Good parenting is of course supportive and protective, but it does not resolve the desire of some people to know more about who helped create them...
29 April 2013 - by Professor Eric Blyth 
Donor-conceived individuals might justifiably feel short-changed by the Nuffield Council on Bioethics' report 'Donor conception: ethical aspects of information sharing'...
29 April 2013 - by Professor Carol Smart 
From my point of view as a sociologist carrying out research in this field, the Nuffield Council on Bioethics report on donor conception is to be welcomed as a scholarly and balanced contribution to current debates...
22 April 2013 - by Dr Wybo Dondorp 
The Nuffield Council report rightly rejects the call to pressurising parents into compliance, as this abstract ideal of openness disallows them to make their own moral judgements about what is best in their situation and for their family...
22 April 2013 - by Antony Starza-Allen 
The Nuffield Council on Bioethics has recommended that parents of donor-conceived children are best placed to tell them about their biological origins, but should not be mandated to do so...
Comment ( - 14/05/2013)
Unfortunately one of the foundations of Mr Saer's argument that the removal of anonymity cut donor numbers over night is not supported by HFEA data of new donors.
Since anonymity was removed in 2005 the number of new sperm donors has actually increased from 272 to 480 in 2010. While egg donations which initially dropped now had increased by 200 by 2010. If the removal of anonymity was such a problem then the recruitment of new donors would have continued to fall since 2005 but the reverse has happened.
Comment ( - 14/05/2013)
I wonder if you perhaps mean that the current position on anonymous donation is obstructive to parents, since you don't cite any research on what donors actually think about anonymity and your argument isn't borne out by the numbers.

I am really struggling to understand how you interpret an increase in donors since 2005 as 'cutting supply overnight'. Demand has gone up massively, so we still can't treat everyone, but numbers have very clearly increased.

It's true that lack of anonymity was a problem for some people, and presumably those people decide not to continue to donate after 2005. But it's illogical to claim that donors are 'heroes' and then imply that we don't know our own minds when we commit to identifiable donation. Speaking as an egg donor who donated before 2005 and then re-registered to become identifiable, I am well aware of what it might mean for myself and my family and quite capable of acting in my own best interest.
Comment ( - 14/05/2013)
How depressingly familiar - a donor conception parent thinking only about themselves. As other posters have pointed out the number of donors has actually increased but even if it hadn't removing anonymity would still have been the right thing to do. It is quite simple. Donor-conceived people want to know who their donors are, seeing it not as desirable but fundamental. Not all of us, but many of us. That surely is all you need to know. We shouldn't have to prove that knowing increases our wellbeing, though I'm sure it does.

There is no need to second-guess our feelings - there are lots of us out there, we are telling people like yourself exactly how we feel through mechanisms such as Nuffield and we are being ignored, it seems, because we do not feel the way you want us to feel. You imply that donor-conceived people should just be grateful for existing. Other people get to exist AND be able to put themselves in context. Why shouldn't we?
Comment ( - 21/05/2013)
Hold on, RachelPepa...examine his tagline carefully before you paint his remarks as reflective of "a donor conception parent thinking only about themselves." Mr Saer is the business manager of an IVF clinic. His interest here is commercial. As a donor-conception parent myself, I disagree with your broad characterization.
ending donor anonymity did not cut supply ( - 14/05/2013)
"The ending of donor anonymity in the UK cut supply overnight."

Why do people keep saying this?  It's simply not true.  According to HFEA figures, the numbers of sperm donors have gone *up* six years in a row since the ending of anonymity, thus reversing a three year decline.  The 480 donors in 2010 was the highest figure since they started keeping records, and more than double the figure in 2004 just before anonymity ended.  The numbers of egg donors have also been higher in 2008-2010, than just before anonymity ended.

I don't have a huge problem with gamete donors being paid, or the numbers of children per donor being increased, but we should never go back to the days of anonymous donors.  The donor-conceived are the ones who matter in this, not the parents, not the clinics, and not the donors.

If a gamete donor wants to be anonymous, then they simply shouldn't be a donor.  I was a sperm donor over 20 years ago, and if I have any genetic children looking for me, I've made it as easy as possible for them to find me.
Comment ( - 16/05/2013)
I hope the author has a plan for what to do in a few years when his daughter asks - 'why did you choose an anonymous donor? I would have wanted to meet her and you have denied that to me. Other kids know who their donor is and I want that too. I feel like a commodity, why did you do this to me?'
The kids are speaking, the evidence is there if you you listen
As for donor numbers - 'clinic recruited' egg donor numbers in clinics here in Australia have declined, however there has been a massive increase in recipient recruited egg donors, women who understand the positives of a personal relationship with their recipient and the donor conceived child and so answer an advertisment or join a web based forum to offer to be a donor
Strongly Disagree ( - 17/05/2013)
I cannot disagree more strongly with the author of this article. I am the mother of a 2 year old boy, conceived through egg donation and I firmly believe that there should not be anonymity for donors.
a) There are not shortages of eggs - many UK clinics have very short waiting lists, some have no waiting lists at all.
b) These decisions are not for the adults - donor or recipient - involved in donor conception to make. I think - I hope - that when your child arrives, you will understand that *she* is the single most important person in this equation - if she isn't, then there is something wrong with your equation. That means that the adults should put aside their insecurities and be prepared to support the needs of the child - and those needs might involve seeking out their donor. I don't know whether my son will want to make contact with our egg donor but if he does, I didn't want to have to explain to him that mummy and daddy felt that the donor's privacy or mummy's insecurity about the fact that she couldn't have her own genetic child was more important than his desire to find out more about *his* genetic origins.
Yes, adoption and fostering processes are intrusive. Yes, it can hard for those of us who have found that our own gametes don't work properly to face the idea that our family is not a closed unit but one that might have links to someone else's. But it has to be that way because we are protecting the emotional and physical well being of our children. We are important, we are not irrelevant but we are secondary. Donors and recipients should be well-counselled in the responsibilities of what they are doing and I fear that those who support anonymity and complain about the intrusiveness of processes like adoption just don't understand what they are getting into as parents.
Donor Anonymity ( - 19/05/2013)
I am so disappointed  to read this article. I cannot think of any truly altruistic reason why this couple would want to go out of their way to prevent the future possibility of their child finding out details of, or contacting their donor IF THEY WANT TO. There just isn't a good reason. There are many reasons why we as parents may wish to prevent this, but the child must come first. The biggest problem is that we make these decisions BEFORE we have a child; before we truly see our desired pregnancy as a thinking, feeling human being. And once we see that; once we have a little toddler, a little PERSON  running around, it is too late to undo those decisions.
Our daughter is one of many who is quite content to know that she is donor conceived, to know that there is a donor out there, but not be particularly interested to discover more than that. Thank goodness, but if she ever does want to know more, we have to accept that we have willingly deprived her of the information. None of this occurred to us when we were having treatment because we just wanted to be PREGNANT; to have a BABY. She is 18 now, and at the time there was an assumption that a) the donor would be anonymous b) we would never tell her or anyone else that she was donor conceived. But times have changed, as they have for adoption, and in order to protect the mental health of our children, we need to be open with them, and keep all avenues open, even if they never wish to travel down them.
Mr Saer's misrepresentation of the Pratten case history ( - 30/05/2013)
Mr Saer's opinion is flawed in three matters.

Mr. Saer makes a number of unsubstantiated emotionally charged assertions. You can hear the crowd-whipping frenzy in statements like "Donors have run a mile, families have suffered and the advancement of medicine has been hindered." These ludicrous remarks would be roll-on-the-floor hilarious if the subject weren't so serious.

As others have pointed out, he deals loosely or manipulatively with facts about the UK gamete market.

But the transgression that compels this writer to marshal words is Mr. Saer's treatment of the Pratten case. As a Canadian and close observer of the Pratten case progress, I must call him out for his one-sided representation of the Pratten case history.

While it is true that the court decisions did not end up in her favor, Mr. Saer seems keen to hide the other side of this case from his readers. First, he minimizes the Supreme Court of British Columbia's ruling in her favor by dismissing it as "an earlier decision." Apparently, his readers wouldn't be interested to know that the highest court in the province agreed with her.

Secondly, he takes inflammatory tidbits from the case and uses them to characterize her argument instead of fairly stating the issue at hand. Presumably, Mr Saer doesn't want his readers to know that BC has laws granting adoptees access to identifiable information about their genetic parents. Apparently his point will hold less emotional suasion if readers are allowed to digest the merits of Ms Pratten's appeal for equal treatment; given that in this point Donor Conception and Adoption are quite similar.

Mr Saer is to be commended for his enthusiasm and his heart-felt passion about reducing fertility treatment costs for would-be parents. But, his rage against British bureaucracy and the high cost of IVF is misplaced when aimed at issues surrounding the ethical treatment of donor-conceived people.
Message in a bottle. ( - 22/05/2013)
You may not know me now but poke around on the web a little and you'll get to know me.  I reunite families separated for all kinds of tragic reasons. Sadly more and more families seeking reunion were separated by parents required to abandon their offspring according to the terms of gamete donation agreements.  The child you are expecting is a full fledged member of the families he or she will be genetically related to and there is nothing you or anyone else can do about that.  His or her relatives may not take to kindly to the idea of their full grandchild, niece, nephew or cousin being concealed from them sequestered from them and they have every right to go out looking for the person you raise.  Even the estranged mother will have every right to go look for her child and you'll have no say so at all in that.  If they figure out that they are a relative of the child you raise they can walk up to them on the street or at school or call them on the phone and introduce themselves.  Oh yes they can.  If your partner is over 39 when she gives birth - the person she gives birth to will figure out in short order that she is not their mother and they will also in short order join a website like FTDNA or 23 and me to find their family and their family will be there waiting.  I assure you.  The intentions of the mother when she signed agreeing to let someone else raise her child don't bind her entire family she can't speak on behalf of them.  Nor can you force the hand of the person you raise by what you refer to as good parenting.  People don't replace one another.  The woman that gives birth in this instance is there in addition to his or her mother not instead of.  She does not replace her.  Her family will not supplant their own family their own kin. I help people find one another despite the enormous obstacles put in place to keep their families apart.  

Think about that - you want obstacles put in place to separate families to hold them down to keep them from seeking one another out.  Guess what truth is lighter than anything you can weigh it down with and one good shove and it will eventually float to the top and drift with the tide to the shore.  That's my message in bottle to people that like to isolate and separate.  It won't last.
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