Select Committee on Science and Technology Minutes of Evidence


Examination of Witnesses (Questions 240 - 259)

WEDNESDAY 30 JUNE 2004

MR WALTER MERRICKS, MS MICHELLE SNEADE, MR DAVID GOLLANCZ AND MS BECKY GARDINER

  Q240  Geraldine Smith: At the age of 12, if you had known the identity of the donor and some details, do you think that would have helped you?

  Mr Gollancz: Enormously; yes. It would have meant that the figure in my imagination which occupied that space was a real person with a name and a history. Even if I could not meet them, they would be a real person as opposed to a ghostly insubstantial figure.

  Ms Gardiner: I should like to echo that. I was much older when I was told, I was in my mid-thirties, only four or five years ago and at the moment of being told the facts of my conception I was also told that the doctor to whom my parents went had destroyed all her records on her death. It was all in one sentence. What I felt as a result of that was a huge sense of dislocation from the family which had brought me up, coupled with an absolute void, just nothing; nothing. If there had been something, it would have helped; bizarrely, it would have helped to reconnect me to the family who brought me up. I would just have helped me to find my way through it. It would not have made it an easy thing, but it would have helped.

  Q241  Chairman: Do you think the state has an obligation to record the identity of donors.

  Ms Gardiner: I think so; yes.

  Mr Gollancz: Very strongly yes. I would go so far as to say that keeping archives and histories is the mark of a civilised society generally and to discard history in that way is barbarous.

  Mr Merricks: One of the points we have made in our submission is that although the state has its obligation under the Human Fertilisation and Embryology Act to retain records of treatment after the Act came into force, there are many records out there relating to children born before 1991 and there seems to be no obligation on anybody to do anything with those records. At least they ought to be preserved and conserved so that access to them may be possible for relevant reasons. We know that the removal of anonymity is not going to be retrospective, but nevertheless it seems to us extremely important that records of the kind that Becky has just referred to are not destroyed. There is nothing to prevent the destruction of those records at the moment. I know of one doctor who was responsible for a number of treatments and contact has been made with that doctor—he is now in his late eighties—and there are some records in his house and who knows whether or not he is going to destroy those or his wife may do so.

  Q242  Kate Hoey: Is the inevitable consequence of your desire to have no anonymity, not going to mean fewer people? Surely many of the people, particularly among the student population, who used to donate regularly, almost as a source of income, are going to stop.

  Mr Merricks: We hope not. What we hope is that a new type of donor will be recruited; that is certainly what the Health Secretary, Melanie Johnson, has been talking about: trying to create a new climate in which donors are going to be valued, recognised for what they do, that donation is going to be valued and seen in an open culture and context in the same way that blood donation is.

  Q243  Kate Hoey: It is a job for somebody then: "I'll be a donor, it will be my job, it will be valued and it will be paid at a certain rate".

  Mr Merricks: It is not going to be a fulltime job; it is going to be something which people do as part of their contribution to the community. It is an enormously valuable, charitable contribution. The most valuable contribution that anybody can do is to contribute part of their genetic inheritance.

  Q244  Kate Hoey: So none of you has any concern that it will actually mean that there will be fewer donors.

  Mr Gollancz: If you mean concern, it rather depends. For my part, it is important to say and I have often said publicly that if there are fewer donors then so be it; if there are fewer donors, then okay, that is the consequence, tough.

  Q245  Kate Hoey: You personally would not mind if fewer families were able to be helped because of a decision taken.

  Mr Gollancz: Clearly one does not want to be completely uncompassionate, one would feel for them, but what I am saying, put very simply, is that if something is wrong it does not become right because it is convenient. If the consequence of doing the right thing is that life becomes more difficult, well, tough.

  Q246  Geraldine Smith: What about the issue of not being retrospective? How do you feel about that, that in the future some people will be able to find out their backgrounds and other people will not?

  Mr Gollancz: For my part I am pragmatic about it. There is a strong ethical case for the loss of anonymity being retrospective, that people never had a right to be anonymous and they should not be protected, but to enforce that would cause so much distress and resistance and turbulence that it is in a sense not worth it. So I have never pressed for it, even though in strictly ethical terms you can make quite a good case.

  Q247  Dr Harris: I suspect that my colleague on my left will want to return to the issue of gametes supply but what I want to question first is the issue of rights and interests. You did accept in your earlier answer that there was not a right to know, but there was a right not to have the information withheld. Do any of you feel that there is a right in the sense that we understand human rights these days to know one's genetic origins?

  Mr Gollancz: I think there probably is such a right in ethical terms. I do not think it is practical to frame it as a legal right. You can frame a legal right as it might be incorporated in the charter in the terms I expounded before, which is why I cast it in those terms. I do think that is a manageable, practical thing. I am a lawyer, so I tend to think of what we could actually make work. You could make work a fundamental human right not to be deliberately deceived or deprived of information. I do not think you could make work a right to know; it is simply too private an issue to operate in that situation.

  Q248  Dr Harris: Do you think there is a balancing right of parents not to have to divulge who they slept with when someone was conceived?

  Mr Gollancz: I did say deprived of information by public authorities. Again this is the legal bit playing in. I am talking about human rights in the legal sense, which are rights exercisable against the public authorities, not against other individuals.

  Q249  Dr Harris: That is why I was asking whether you thought there was a principle here of a right to know, because the principle of the right to know would not depend on whether the person with the information was an official or someone in the family if there were a right.

  Mr Gollancz: There may be a whole world of rights which could be, should be vindicated against other individuals, one's parents, one's siblings, other individuals in society, all sorts of people. I do not particularly think the House of Commons is the place to debate those rights. They are moral rights and they seem to me to belong to the sphere of private ethics, religion, whatever. I have always concerned myself in the context of this issue with rights which are capable of being legislated.

  Q250  Dr Harris: In your evidence you suggest that people should not have the right to access treatment if they do not commit in advance to divulging to their children that they are donor conceived and that is therefore impinging on the rights of other people in the family sphere.

  Mr Gollancz: I do not want to slither sideways out of that discussion, which I am happy to enter into it. I think it is important for clarity's sake to say that statement, as it is put there on the piece of paper in front of you, is the Donor Conception Network's view and although I am a good friend of the DCN, I am not a member and a range of views may be represented here.

  Mr Merricks: Our position would be that there needs to be a switch in the assumption. Up until now the assumption has been that people are entirely free to do what they like. What we know is that people going through treatment are often very isolated and one of the things the network seems to do is to minimise that isolation. It is very difficult for them to project forward to the time when the hoped-for children are going to be in their teens, growing up, or indeed at the age of Becky and David. People looking for a baby are suggestible at that time when they are going through treatment; they are desperate for a baby. What has happened up until now is that many clinicians have encouraged people not to tell. They have simply said "No-one need ever know, you could pretend this never happened, you could just go back home and pretend this never happened. You don't need to tell anybody". We do know how many people conceived this way are going to feel distressed by not having been told. Our view is that the position should be reversed so that the normal assumption should be that people should be encouraged to tell.

  Q251  Dr Harris: I understand what you are saying, but you go further than that. You say "Our view is that the welfare of donor conceived children" and I should like to ask about the evidence for that "demands that only those who are clearly committed to telling their children should be [even] offered donor treatment". That is much stronger than what you have just said. You went a bit far in that statement of policy.

  Mr Merricks: It is a position which cannot be enforced. It is not the way you could ever enforce anything. As David rightly said, it is not the sort of thing you could put in legislation.

  Q252  Dr Harris: You can get them to sign a commitment.

  Mr Merricks: You can, but—

  Q253  Dr Harris: Is that what you are envisaging?

  Mr Merricks: No.

  Q254  Dr Harris: Otherwise it is relatively meaningless, is it not? Everyone will just say "Oh yes, of course I'll tell them. Give me the sperm".

  Mr Merricks: No, I do not think that is meaningless at all.

  Ms Sneade: I have two donor conceived children. At the point of treatment all you are thinking about is having a baby, you are not really thinking about bringing the child up in the world at all. You just want to have a baby. I now have six-year-old children. You do not think how it is going to affect them through their lives at that point and it is very important to be educated at that point as to how it will affect them in their later life. It is not just about having a baby. There should be a whole climate where you are not feeling that you are doing a terrible, secretive thing. There should be no issue about telling them, because it should just be a natural thing.

  Q255  Dr Harris: I am not disagreeing with that; I am just disagreeing with the statement from the Donor Conception Network.

  Ms Sneade: I think the Donor Conception Network's position is that there should be enough information around and there should be a climate where people want to tell their children.

  Q256  Dr Harris: I understand that, but that is different from what is said here. May I ask what evidence there is in the scientific literature that there is harm to donor conceived children from not being able to trace their genetic parent, separately from the anecdotal cases of people who have had it withheld from them that they were even donor conceived, which I imagine might be damaging, although there is evidence in Berlin today to suggest even that is not damaging, but let us assume that is damaging? Is there any evidence, even a published series of anecdotes, that people who are told they are donor conceived at an early age are really troubled and damaged in significant numbers by not being able to trace their genetic origin? Is there evidence that is great enough to deal with the problem my colleague raised, that if we solve that presumed problem it might mean that there is less ability to be treated for infertility because of a problem with donor supply?

  Mr Gollancz: There are so many assumptions and axioms underlying what you have just said that we could probably spend the rest of the day unpicking it. I shall try not to do that.

  Q257  Dr Harris: Give me the scientific reference.

  Mr Gollancz: One of the points is that at one point you talked about scientific evidence and then you talked about a published series of anecdotes which sound like two different kinds of sources.

  Q258  Dr Harris: I should prefer the scientific evidence as opposed to the anecdote.

  Mr Gollancz: As to scientific evidence, all sides of this argument are in a great difficulty to produce anything remotely resembling scientific evidence for a number of reasons. First of all, notoriously, you cannot re-run a person's life under different conditions to make a control, so you never really know how any individual story would have turned out had things been different. All evidence around this has to be a little contaminated by vagueness and sociological opinion-making rather than true science. A further point of real difficulty is that the samples and populations used in such studies as there have been have been miniscule compared with the numbers of people actually affected, because in fact so very few people are told that they are donor conceived that you do not really have a large enough population to work with to test anything very much. Anecdotally, however, there is some evidence and I, for my own part, speaking purely from personal knowledge now, have met 25 or 30 people, ranging in age from their late teens to my own advanced years who were donor conceived, usually, but not exclusively, under conditions where parents were actually made to promise, in a mirror image of what the DCN is proposing, that they would never tell anybody, including the children, but who have then found out, but have been unable to find out the identity of the donor. All of them, absolutely all of them, say with a good deal of passion that knowing you are donor conceived and not being able to find out who the donor was is an extraordinarily painful thing.

  Q259  Dr Harris: How do you separate out the way they feel about having the fact that they were donor conceived withheld from them, which you said applied to almost all of them, from the smaller group of people who would know that they were donor conceived in an ideal world, because parents would be encouraged to tell them—I do not disagree with that—but then could not trace their parents? Do you see the point I am making?

  Mr Gollancz: Yes, I do.


 
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