I have been back a week now from Belgium where I attended a conference called Donor Conception: An unfamiliar path to a normal family? I am still unclear quite what to make of it. The two days were put on by a department run by Guido Pennings of Ghent University and took place in that very pretty town. Most of the presenters were from the university but there were also people from The Netherlands, Sweden, the US and the UK. The language of the conference was English for which I was both very grateful and felt embarrassed by my own lack of at least one other European language when most people there spoke several fluently.
It was clear from several of the Belgian papers that the argument about the importance of identifiability for donors has not yet been won in this country. There was much talk of a balance having to be kept between the differing rights and responsibilities of all parties to donor conception and deaf ears when audience members, including those of us from parent organisations, argued for the importance of keeping doors open for donor conceived people to have the choice to have information. Several of the presentations were mind numbingly academic or incomprehensible in their complexity, but I was proud of Petra Nordqvist (Manchester), Lucy Frith (Liverpool) and Lucy Blake (Cambridge) whose offerings were clear as well as thoughtful and thought-provoking. Petra was particularly interesting on the ambivalent attitude of some parents to connections being made with genetic half-sibs, preferring a kind of ‘un-knowing’ to active acknowledgement of their presence. They also indicated concern about a donor ‘waiting in the wings’ post-18. One of the messages from both her and Lucy Frith’s presentation on how donor conceived adults who have chosen to be on the UK Donor Conceived Register construct relatedness, was that things change over time. What people feel at one stage of their life they may not necessarily feel in ten years time. And it can change in a range of ways, not just negative to positive or the reverse.
Whilst continuing to claim that most parents still don’t tell their children ( can this really be true in the UK?) Lucy Blake had hot off the press good news for those who do. Results from very recent interviews with 9 sperm donor conceived 14 year olds who have been followed from one year old and told by their parents about their conception, show that for the vast majority donor conception is not an important part of their life. Further interviews with 15 egg donor conceived young people of the same age have yet to be transcribed. Lucy also said that there seemed to be very little discussion of donor conception in these families at this age and wondered if this was a problem. My own feeling is that this is very normal for early teenagers who tend to want to be just like their friends and not discuss anything that makes them different. This usually changes later.
It was not until 5.15 pm on day one of the conference that the room came alive as we heard from the first donor conceived adult, who quietly and cogently put the case for donor conceived people to have the choice to know about their donor. The relief of hearing something ‘real’ rather than academic was palpable.
As part of the first day’s summing up Petra De Sutter from Ghent University appealed to those with personal or counselling experience in the audience to help clinicians change their narrative when faced with helping a couple manage the transition from IVF with their own gametes to using a donor. Moving from putting a lot of emphasis on genetic connectedness to saying or implying that genes don’t mean anything. My answer was, first understand that a grieving process has to take place before moving on to accept (or reject) donated eggs or sperm and then that only people who can manage the apparent paradox of understanding that genes are both extremely important and not important at all should be encouraged to go forward for treatment. Donor conception is not for everyone.
The second day brought a very distasteful presentation from Ole Schou, head of Cryos Sperm Bank who in a misplaced attempt to empower women, portrayed men as completely unselective in their sexual partners and illustrated this with a crude parade of slides showing animals mating. The dismaying news he gave was that his sperm bank was seeing a huge increase in demand for sperm from individual women rather than clinics and that he didn’t care what the rules were in different countries. If the market was there, he was going to send sperm to them. In this way he can undermine all the UK regulations about identifiability, number of families a donor can help create and payment BUT, as a Belgian colleague pointed out, it may be the only way that a Belgian (French, Spanish, Czech etc,) woman or couple may be able to have an identifiable donor. Damn.
The second day also saw lively speeches from another donor conceived adult and a Belgian politician who spoke passionately about the need to end anonymity for donors in her country. Let’s hope her arguments prevail when they are debated in parliament.
The very best thing about the two days in Ghent was meeting up with people from the new parent groups in Belgium and Germany. There was even a solo mum from Austria, although she is really Canadian! We had long talks about the issues they are struggling with in their own countries and with the tensions, stresses and strains of keeping up the momentum of having founded new organisations in an age of fast and demanding digital communication. It made me reflect on the early days of DC Network and how four out of the five founding families did not hesitate about appearing on TV or in newspapers. Twenty-three years ago donor conception was not talked about in the media in the way it is now, most people did not ‘tell’ their children and doctors were still telling parents to go home, make love and forget about it. And yet, we received nothing but support, kindness and admiration from others. I suppose we were brave, although it didn’t feel like it at the time. But I do think that our willingness to put our heads above the parapet and insist that donor conception families were just like any other in every respect other than conception, helped to shift public opinion. I think this is what you have to be prepared to do. What was different then was that virtually no-one was connected to the internet and there was no email or mobile phones, so DCN received only land-line calls and letters and had time to grow slowly and organically. No such luck for organisations now. Time for a pan-European conference for all those concerned with the well-being of donor conception families I think…our agenda this time!