22 April 2013
ByAppeared in BioNews 701
This podcast was produced as part of the When It Takes More Than Two project organised by the Progress Educational Trust (PET), the charity that publishes BioNews. It features interviews with five people who spoke at the public debate 'Being: The Donor-Conceived Perspective' - Sarah Norcross (of PET), Professor Eric Blyth (of the University of Huddersfield), Christine Gunter (of UK DonorLink) and Kevin Moore and Jess Pearce, two donor conceived people.
It can be listened to using the player below, or alternatively can be downloaded by clicking here (.mp3 13.8MB). A transcript follows.
James Brooks: Hello and welcome to the second of the Progress Educational Trust's - that's PET for short - podcasts. I'm James Brooks, the science editor for BioNews, which is PET's weekly publication. In a quick plug that's something you can all get free, just go to the website.
So it's the second PET podcast but the third and final event of PET's 'When it takes more than two' series of events focusing on gamete - that's sperm and egg - donation and donor conception. The first event was called 'Giving', then we had 'Receiving' and now it's 'Being' which will focus on the experiences of the donor-conceived.
So I'm back at the JZ Young Lecture Theatre at University College London, sitting high up at the back here as the first people just start to come in.
I'm joined once again by PET's director - that's my boss - Sarah Norcross. Sarah, I think that one of the key issues we'll be talking about is donor-conceived people having access to information on 'their donor', as they say. I know that gamete donation is currently done on the understanding that when the donor-conceived person turns 18 they can have access to identifying information for their donor but it hasn't always been that way, is that right?
Sarah Norcross: Yes, that's right, James. It used to be in the UK that all donation was anonymous unless people used a known donor and that's usually quite rare. But it was felt that the donor-conceived adults who were growing up and as there were becoming more of them, that it was actually quite important to them to know who their donor was. So after public consultations, lobby work etcetera that our chair tonight Eric Blyth was central in, in 2005 the law changed so that now all donations that are done in licensed clinics in the UK, the donor has to be identifiable.
And it's quite a difficult area in some ways because we talk about known donors, identifiable donors and this-that-and-the-other donors but these donors, they're not anonymous but they're not known from the beginning. So different bits of information about the donor can be released at different times and so the recipient parents can get information when they're planning to try for pregnancy and then the child can apply to the HFEA, the Human Fertilisation and Embryology Authority, for information at the age of 16 and that information is non-identifiable information. And then at 18, that is when the donor-conceived person can apply to the HFEA for information.
Now, since the change in the law there's been some work and in fact we did an event on raising awareness of the fact that donors who donated before that change in the law could write to the HFEA and say 'I was an anonymous donor but I don't mind being identifiable to the children I helped conceive and here are my details'.
JB: And I would imagine that as a result that the people who were donor-conceived before the change in the law it's very much a lottery with regard to how much information they're ever going to be able to access dependent on whether these people come forward - is that right?
SN: Yeah, that's absolutely right. Some people have got very little information, they perhaps just know he was a medical student, others have a bit more. But there is a voluntary register where people who were pre-1991-donor-conceived and donors can voluntarily register their information, have DNA taken so that matches can possibly be made, whether for a donor or for a half-sibling.
JB: So that's donor anonymity. What other issues are we going to be touching on, do you think, this evening?
SN: I think we'll be touching on how donor-conceived people are told that they're donor-conceived and when they're told. That can make, seems to make from the anecdotal evidence that I've heard, a really big difference in how donor-conceived people handle that information and how it impacts on the rest of their life.
Some people they've known forever, you know, they can't remember being told and it's just part of them and it's not a big deal. For other people, obviously if they find out and it's a traumatic experience because it's been a family secret then it doesn't take much imagination to think how it can have an impact on your relationship with your parents.
JB: I'm with Eric Blyth who is Professor of Social Work at the University of Huddersfield, he's chairing tonight's event. Professor Blyth has been involved in research and policy development in donor conception for over 20 years now. In fact quite a bit over 20 years, as I believe that the involvement began around the time of a very important report in this field which was the Warnock report in the mid-80s.
Eric, I was just hearing from Sarah of your involvement in campaigning, successfully as it turned out, to end the era of anonymous gamete donation. Why did you take that stand and why was it so important to you?
EB: OK, well, it stems from the original Warnock committee report which recommended that donors should be anonymous and of course that was then instituted in the Human Fertilisation and Embryology Act 1990.
But there'd been a long history of research within adoption to identify how important it was for adoptive people to know about their origins and back in the 1970s the law was changed in England and Wales to allow adoptive people to access their birth records when they reached the age of 18. And although there are clearly differences between donor conception and adoption our association, and certainly me personally, very much believed that similar principles applied that when people were wanting to find out about their genetic origins, whether they were adopted or born as a result of donor conception, there was not a fundamental difference.
Certainly, since then what donor-conceived people themselves have said very much reflects what adopted people have said so that's really what was behind our views then and still is the case of course.
JB: I know there has been elsewhere in the world maybe a growing movement which has culminated, I think, in some developments in Victoria in Australia with regard to retrospectively removing donor anonymity. How do you feel about that, and maybe just flesh out that a little bit for me.
EB: OK, well, I mean this has been an issue that's been around clearly for a long time and in the UK when the law was changed in 2005 to allow any person conceived through donor gametes or donor embryos to identify their donor when they reach the age of 18... But clearly people who'd been conceived though donor conception before that date were still not allowed to do that because of the old rules. And that's always been a very controversial issue because clearly you've had not only donor-conceived people, but other people, saying 'Well, if we think it's right that donor-conceived people should know information including the identity of their donor then why's that not right for everybody, regardless of when they were conceived?'
And that's always been a tension. Now, one of the arguments in relation to that clearly is that at the time the donors were assured of anonymity and they donated on the basis they would be anonymous and if it was decided the rights of the donor-conceived people take precedence then the donors who donated anonymously, well, then it's just too bad for them.
That's always been a very difficult decision to make. The Law Reform Committee of the Victorian Parliament has actually taken that step and made the recommendation that regardless of when donor-conceived people were actually conceived that they should all be able to identify their donor and that is currently under review by the Victorian government.
I was actually invited to give evidence to the Law Reform Committee back in 2011, I think, when they were seeking views from people. And, well, I think that with certain safeguards - and what they're recommending in Victoria is that donors would have a right of veto - but that with that one exception that then all donor-conceived people should have the right to information about their donor including their identity. You know, that would be my view and it still does give donors who really don't want to be identified the right to retain their anonymity.
JB: Good, so that's a quick discussion of donor anonymity. What are the other major issues and themes that affect donor-conceived people and that you think might be coming to the fore in the event this evening?
EB: I think that a major issue that is beginning to be discussed now is the fact that most donor-conceived people will have half-siblings.
Now, in the UK there have been, since 1990, limits on the numbers of children the numbers of families from which there are children from each donor. In many countries of course there are no limits and we know within the Unites States, for example from the work of the Donor Sibling Registry where there are large numbers off offspring from a single donor. In one case I know about where there are now known to be over 200 children, ranging in age of course, all from the same donor.
And that is an increasing interest in that people are interested in knowing about their half-siblings and some of the work that I've done has actually been with donor half-siblings who have discovered the identity of each other and made contact with each other. A number of those had been brought up in relatively small families - which would make sense because their parents had got fertility problems - and now they're discovering they might have 11, 12, you know, 200 [laughs] half-siblings scattered around the world and that certainly is a big issue.
And I think as well, it's something that really hasn't come on to the agenda at all yet and that's the children of donors because there's been no research on their interests at all and it wouldn't surprise me if the children of donors who knew that their parents had been either a sperm donor or an egg donor, or indeed an embryo donor, might not have some interest in the half-siblings or in the case of embryo donation, full siblings somewhere else.
So I think the sibling issues are going to be ones that will certainly gain a lot more attention and interest in time to come.
JB: The hall is starting to fill up now, I think we have half an hour to go before the event actually starts. I'm joined by Christine Gunter, who is coordinator of UK DonorLink, the organisation mentioned briefly by Sarah earlier. UK DonorLink is a voluntary contact register for people who donated or were donor conceived in the UK prior to August 1991, when regulation as we know it of donor conception began. Now that group of people will include people born not just via IVF, but also others born by, shall we say, more primitive donor conception techniques.
Christine, thanks very much for joining me, what will be the key points of your presentation this evening?
Christine Gunter: Well, first of all, I was going to explain what UK DonorLink does, very briefly, and then talk about how people are so highly motivated to find their genetic relatives. I worked in adoption for 20 years; I worked a lot with relinquished babies who wanted to find their birth mother. It's been a really interesting experience for me to find out that even people who know who their birth mother is have a massive urge to find out who their biological father is - the sperm donor.
JB: Speaking with Eric Blyth there earlier, he mentioned briefly some of the similarities of issues of people who are adopted with people who are donor conceived; that's what you've found, yes?
CG: I have found that. Obviously there are a lot of differences as well, but there are similarities. A lot of donor conceived people feel that people who are adopted have got a lot of rights that they don't have. For example, they do have access to their birth records and when they changed the legislation in the 1970s they made that retrospective, whereas any legislation for donor conceived people has never been retrospective.
JB: I see. And I imagine that you must have a fair amount of experience dealing with donor conceived adults now. What are some common issues or fears that they may have?
CG: Obviously donor conceived people vary enormously. On the register we have people that are maybe curious to people that are very distressed about being donor conceived. The common themes probably are things like wanting to know about health issues; wanting to know if they've got any half siblings out there, because most of the people on our register are from a time when the clinics weren't regulated, so the fear is they have lots of half siblings; the fear of accidental incest and so on.
I think it's also a curious thing about 'where I come from', and some people are quite... they don't like the manner of their conception, they find it too clinical, they were not conceived in the way that they would think - I mean obviously there were people that were conceived from rape and all sorts of horrible situations - but for donor conceived people, they often feel like it's the not the way they would have liked to be conceived.
JB: And with regard to... the identity issues, I think are particularly interesting, what do you see as the common themes there - again, obviously everybody's different - but what are the common themes there?
CG: It's people feeling that they don't fit into their family. They don't look like anyone in their family. Do they look like their donor? They may have talents that they know were in their family. Sometimes musical talents, sometimes they're academic and their family aren't at all academic. It's the feeling of wanting to belong, really. It's easy for those of us that are not donor conceived to say 'you've got your Aunty Betty's red hair' or 'you've got your uncle's nose' or something. But donor-conceived people are often left feeling like adopted people, they don't necessarily fit in with their family.
JB: Now, a lot has changed since 1991 and the arrival of regulation and the HFEA, I think most people might say for the better, but going forward do you have any worries or concerns for donor conceived people?
CG: I do have a lot of concerns for the future, because although the legislation has changed, there's not the support networks there for the people that are coming up to 18 now, and I'm very concerned about the babies that were born from 2005 onwards, because they will be given identifying information on their donor, but I don't know if anyone's thought about what kind of support they'll get - who's going to fund that? I mean, these are big questions for the future.
JB: Jess Pierce, the first of this evening's donor conceived panellists, has joined me. Jess will be talking about her personal experience. Jess, can you tell me a little more about that?
Jess Pearce: Yes, hi. Basically, I am a donor-conceived adult, as you've already said. I was born in 1980 and I found out in 2009 that I was donor conceived. So I was 28 when I found out, and I'm now 32.
I mean, my mother told me on a random weekend, I think she'd been building up to it for quite some time. She'd heard a programme on the radio which really got her thinking that it was the right time. My parents had wanted to tell me earlier but it had never been the right time - I'm not sure how you define what the 'right time' is. And yes, it's been a bit of a journey ever since really.
JB: I imagine the reaction was probably one of shock, but how did you feel when you were told?
JP: It's quite a funny one actually. My mum opened by saying, 'I've got something I need to tell you', and certainly in this day and age most people think 'oh, she's going to die'. So when she told me that my dad wasn't my real dad, I actually felt quite relieved, because it wasn't detrimental to her and all the rest of it.
I think I just felt quite numb, I didn't know what to think. A million and one things go through your mind - did she have an affair? - because certainly I'd never considered that option before about donor conception. And then when she told me, she had to do a lot of explaining because I didn't necessarily understand everything she was talking about.
She's always answered all my questions, and that was the main reason for wanting to tell me was that so she could tell me everything herself. She was supportive from the start, and said anything I wanted to know I could always ask.
JB: Going back a bit there, and excuse me if this is too personal, was the relationship with the man who you had thought of as your father, was that a difficult relationship at the time when you were told?
JP: Actually, I call him my 'social father', and our relationship had broken down some years previously, but obviously I never knew about my conception, so it really had no bearing at all. The fact that we hadn't had a relationship for a good five years before I found out was neither here nor there, and I still believe that he brought me up as his own, and I still believe that he did that in good faith.
JB: Moving on to the journey you've been on since, what has that entailed?
JP: Well, my mum had in fact spoken to UK DonorLink for some advice, so she was able to tell me about them and put me in touch with them, and I rang them and chatted, because it's not every day that you hear about things like this, so you don't necessarily hear about the next step, as it were.
They were very, very useful. I ended up taking a DNA test, as did my mum, and became part of the voluntary register. Unfortunately I've had no matches to date, which is frustrating, and because my mum had her treatment on the NHS, she had her insemination at St George's Hyde Park Corner, but her sperm donation was from the Middlesex. And my mum actually had to go to the Middlesex, pick up her sperm and go across London for the insemination. But because of that, I do actually know my donor's donor number, G27, which enabled me to contact the clinic and ask for any records or messages to be passed on and things.
Unfortunately I've written and telephoned a number of times and I've had absolutely not a dickie-bird. It's frustrating.
JB: And finally, how do you think all of this has impacted on your sense of identity, your sense of self - all these kind of things; if you can just sum that up in thirty seconds, which must be easy, I'm sure.
JP: Yeah, sure. Basically, I don't feel that it necessarily has had a major impact. I was brought up by my mum and my social father. They shaped me into the person I am today. Biologically, I'm different to what I thought I was, and I'm very inquisitive, but at the end of the day, I am who I am, and whether or not I ever find anything out, I don't know, maybe it will change me, maybe it won't.
JB: Well, as you can doubtless hear in the background, the hall is really filling up now, and I'm with Kevin Moore, who's a photographer and creative consultant based in London, but born and raised in sunny Florida. Kevin, who'll be talking about his own personal perspective, is not only donor conceived, but is also a sperm donor, which is an interesting double perspective. Kevin, tell me more.
Kevin Moore: So, I was told I was donor conceived at a relatively young age, about the age of 7. My parents sat me down and said, 'we need you to explain to us how babies are made' first, and I did that, unwillingly. And then they wanted to explain to me that my process was a bit different.
I can't remember where this conversation happened, I think we were on a family holiday somewhere. You know when you're that age, you don't want to have a conversation about these things, so we had this conversation, and I was like, 'that's really your problem, that's not my problem, can we not talk about this anymore?'
But at least it was a conversation we had, and I was aware of it, and they were saying, 'it doesn't have to be a secret, you can tell your close friends of whatever, but it's not something you tell the first person you meet'.
So they just left it with me for a while, it's always been a very open situation, it's not something where I've not been able to bring it up or talk about it. There was never a huge emotional situation about it growing up, I'd never really considered that that wasn't my real father, it was like, 'that's my dad, this is my family'. It was something I always knew about, though, I think that's quite important, because I could question it.
JB: I'm led to believe that you've actually incorporated it in your work, the fact you're donor conceived, when you were doing your MA in photography at Central Saint Martin's. Can you tell me a bit more about that?
KM: It was quite interesting, actually, I wanted to do my project about the idea of being donor conceived, and originally I wasn't really planning to focus on myself, I was going to investigate other people's experience of that, and see if I could find a way to do that, and using the photographic medium as a tool for research.
But I thought, 'well, in order to do that properly, I have to start with myself', because that's what I know, and I should do some research there. So what was meant to be some preliminary research ended up becoming the entire project, because as I did do some research and I went back to the States and my mum found the piece of paper that she'd written the donor code on, I realised I could use that information and find out a bit more about this individual.
In the US there's a website called the Donor Sibling Registry, which I think is very similar to the UK DonorLink, and I registered on that website with that information, and immediately was presented with a match to a half-sister. So we got in contact through the website and exchanged a lot of e-mails.
It was very interesting because it was all very sudden for me. I had grown up thinking I wouldn't ever know anything about this person, or I wouldn't know that much, and then I was confronted with a person that I was related to. She happened to have some paperwork from the clinic that our sperm came from, because she had recently had children, and on that paperwork was some identifying information about the donor. So we used that to find him, and then we used the bank to facilitate some conversations between us and the donor so that we could exchange letters and things, and through the whole process I was able to find out about the donor and what he does and his life and exchange letters with him. So then my whole project ended up being wrapped around all of that experience.
JB: Right, and very unfortunately I think we're going to have to finish on this because the event is just about to start, but can you tell me about your feelings on finding out about that person?
KM: Ultimately, I'm a creative professional, I work in the photography industry, and all my family are doctors and lawyers, and I thought maybe the donor's a creative person himself, and then I found out that he's a lawyer, so... It didn't really answer any questions for me, but in a way that's good, because it didn't let me shift any sort of 'blame' onto this individual.
JB: I see. Well, I really have to let you go, the event is about to start, so thank you very much for joining me, and that goes for everyone listening to the podcast. Thanks.