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UNCORRECTED TRANSCRIPT OF ORAL EVIDENCE To be published as HC 599-ix House of COMMONS MINUTES OF EVIDENCE TAKEN BEFORE Science and technology committee
human reproductive technologies and the law
Wednesday 10 November 2004 MS MARILYN CRAWSHAW, MS DEBORAH CULLEN, PROFESSOR ERIC BLYTH, DR JIM MONACH and MS SHEILA PIKE PROFESSOR
SUSAN GOLOMBOK, PROFESSOR MARTIN RICHARDS, Evidence heard in Public Questions 901 - 1045
USE OF THE TRANSCRIPT
Oral Evidence Taken before the Science and Technology Committee on Wednesday 10 November 2004 Members present Dr Evan Harris Dr Brian Iddon Mr Robert Key Dr Desmond Turner
In the absence of the Chairman, Dr Desmond Turner was called to the Chair ________________
Examination of Witnesses
Witnesses: Ms Marilyn Crawshaw, Lecturer in Social Work and Research Fellow, University of York, Ms Deborah Cullen, Legal Group Co-ordinator, British Association for Adoption and Fostering, Professor Eric Blyth, Professor of Social Work, University of Huddersfield, Dr Jim Monach, Acting Chair of BICA and Honorary Research Fellow, University of Sheffield, and Ms Sheila Pike, Past Chair of BICA and Counsellor, Centre for Reproductive Medicine and Fertility, Sheffield Teaching Hospitals NHS Trust, examined Q901 Dr Turner: Good morning. You are very welcome. Your evidence towards this rather long-running inquiry will be extremely helpful, I am sure. Clearly we want to probe you on the social aspects of human reproductive facilities and the contribution towards thinking that social scientists can make. Perhaps, since you represent two bodies, PROGAR and BICA, you would have a spokesperson who would normally answer your questions, with help from your colleagues if required, because if we have five separate responses to each question it will take us all morning. Do you people advocate greater reproductive freedom? Do you think that counselling will reduce the likelihood that people will make poor choices in their reproductive therapies? Ms Pike: I think counselling is a very beneficial process in relation to people making informed choices. It gives them an opportunity to consider the implications for themselves, for their partners, for their families, in an area that is completely confidential and quite separate from the clinical decision-making process, and I think that is vital. Q902 Dr Turner: Does PROGAR have a view? Professor Blyth: We would confirm that. Without taking up a lot of time, we do not have any disagreement on that particular point. Ms Crawshaw: I think we would also want to add that the general climate, wherever treatment is being offered, is also very important. The counselling part is very important, but it is the whole experience and the general climate within which people are going for treatment within the clinic and within the wider society. Q903 Dr Turner: We do not go through such angst over other areas of medical treatment. What is it, do you think, that makes human reproductive therapies so special that the involvement of medical technology needs additional restrictions on people trying to conceive that you would not place in any other area of medicine? Professor Blyth: I think the bottom line is that the state is actually involved in helping people with the creation of a child. That would be our major view, that because of that, because of the State's responsibility for children it is helping to bring into being, it has that responsibility. Dr Monach: In general, the enormous investment that couples bring to their treatment and bring to what they would describe as the need for a child. That, compounded with what Eric has just said, makes it requiring of the most careful support and scrutiny that I think is qualitatively quite significantly different from many areas of medical health. Of course, the rapid advance of technology is one of the things on which we are focusing so much, and that simply compounds it. Ms Cullen: Also there is the involvement of donor gametes and that adds a different part to the equation, in terms of both the state's involvement and the donor's involvement, and additional implications for the couple that are going to have the child. Q904 Dr Harris: More important than life and death treatment issues which are not regulated as much as this? Ms Cullen: I would take Eric's point really, that it is the involvement of the state in actually helping a person to have a child. Death is going to happen anyway. It is not the intervention of the state that is going to bring that about. Q905 Dr Turner: The interests of the state are not necessarily going to be the same as those of a couple desperate for a child. Where there is conflict, where do you think the balance should lie, between the privacy and dignity of a couple wishing to conceive and the legitimate interest of the state where they do not coincide? Professor Blyth: I think a judgment has to be made about the welfare of the child. Clearly the way in which the legislation is framed at the moment does impose a requirement to take account of the welfare of the child. Although people might think that is problematic in the way that it is currently worded - and certainly we would hope this is something the Committee would look at - I think that is where the judgment has to be made, as it does in many other instances when the state is involved in family affairs where it might be seen that the state's interest, the child's interest, the interest of the parents might not all coincide. Q906 Dr Turner: Who should define the line? Professor Blyth: Whoever has been given the responsibility to do that. Q907 Dr Turner: Who do you think that should be? Should it be the HFEA's? Should it be Parliament? Should it be doctors? Professor Blyth: Parliament should clearly set the framework. I do not see the HFEA getting involved in day-to-day instances, but whoever is legitimated by legislation and by the HFEA to carry out those sorts of responsibilities. Therefore, as it stands, it would be within the clinics. Q908 Dr Turner: PROGAR, in your evidence you advocate a "holistic approach to the role of human reproductive technology in helping people to conceive and to nurture children." Could you tell us what you mean by that. Are you suggesting that all infertility treatments should be regulated in the same way? Professor Blyth: I think by that we mean to ensure that we are not purely talking about the medical and the technical aspects of the infertility and assisted conception. If I could give an example, one might say that donor insemination, for example, is technically very simple, but, as we know, socially, emotionally, psychologically, in terms of family relationships it can actually be very complex, particularly in the way in which children may be told or not about the nature of their conception. And obviously it is intergenerational, because people who have been conceived as a result of donor conception and other forms of assisted conception will inevitably grow up and may well have their own children as well, so we are talking about many years down the track from the point at which a particular act of insemination or a particular technology was actually used. We are looking at it in terms of much wider implications but also longer term as well. Q909 Dr Iddon: On UK birth certificates 14 per cent do not have the father's name entered. Obviously, in families where problems arise after birth, in those situations social services will deal with it. Set that against the fact that only one baby in 10,000 is born from donor sperm. Why do we need a welfare of the child provision? - which came late into this legislation in any case. Why do social workers feel strongly about that? We have to assume, of course, that the parents have been counselled prior to submitting themselves to the new technologies. Does that not seem rather strange, that we are so concerned about an unborn child in these circumstances? Ms Crawshaw: One of the things I should make clear is that PROGAR is not only a British Association of Social Workers but a coalition of a number of different organisations. I guess one of the things we would say is that the notion of the welfare of the child in one sense is problematic - I think we would certainly feel the "need for a father" as the sub-clause of it is problematic - but if we were to think about it in line with the way in which the state has chosen to protect children elsewhere, we would think in terms of significant harm rather than the welfare of the child, and that may be a way to consider going in terms of whether or not there is a way of excluding people from entering treatment where it is thought and there is good evidence to say that a child born to them may be at risk of significant harm. That then allows you to think differently about welfare of the children and welfare of the family unit that may be formed. If we are then allowed to think about welfare in terms of their wellbeing, as opposed to "significant harm", which is a way of excluding people, then that allows us to think about the long-term family functioning of that unit and ways of minimising the risk of any difficulties that may arise within that family unit and maximising the chances of it working out well for them. That I think then opens up all sorts of other doors about preparing people for having a child who does not have a genetic relationship to them, for those people who may find difficulties at different stages of their family life as it unfolds. You start to separate the things out. Does that make sense? Q910 Dr Iddon: A little sense but not complete sense. Would anybody else like to comment? Ms Pike: You said, "We assume everyone will have been counselled" and of course not everyone is counselled. BICA is suggesting or proposing that there should be a requirement for everyone to attend an initial counselling consultation, really just to normalise the experience of counselling. There is a great deal of stigmatisation in relation to counselling: you are seen as not coping - and you are seen as not coping not just by the clinic but also, perhaps, if you are in a couple relationship, by your partner. But if it is made a routine process, an opportunity for you to explore all these issues, as I mentioned earlier, independent of the clinical decision-making process, I think it is greatly advantageous. Q911 Dr Iddon: BICA suggests that "interests and needs" would be better than "welfare of the child", which suggests harm or risk to the child. How would you determine whether the interests and needs of a child to be born are being met, in effect? Ms Pike: It is a very difficult area. Counsellors have traditionally been very keen to be seen as independent of the assessment process that is involved in welfare of the child, and I do believe it is a responsibility at present of the whole team. But, in terms of any future legislation, I would like to see clearer guidelines and I would like to see any assessment that is required made by people who are properly qualified to make that assessment. At present, I do not believe that is the case. Dr Monach: I think it is important to make a very clear distinction between the sort of assessment we are talking about in this context and that we would be thinking of in adoption. We are not talking about setting a bar that is high in order to accommodate a child that is known, a child with established difficulties. We are simply trying to establish the most level of playing fields with most people who of course have their own child through ordinary means and do not get involved with counselling or anything else. We are very sympathetic to that view, which arises with couples who come to units seeking treatment. The important thing, as I think Sheila was saying, is that so often, because of stigma, because of the lack of acquaintance with what counselling is, it requires that first opportunity to meet with a counsellor to realise that they are not actually going to psychoanalyse, they are not going to dissect you, they are not going to be critical of you. Having that first opportunity, people then recognise just how beneficial it can be for them to think very carefully about these difficult consequences that will arise in having the gametes of another person in order to produce their own child, in particular, but it applies in different ways to other treatments as well. Q912 Dr Iddon: More than half conceptions are unplanned. Some require only minimal intervention. Are these children's interests and needs identical for the children you are so concerned about? Dr Monach: When you say unplanned, you are talking about those who are not involved in treatment of any kind? Q913 Dr Iddon: Yes. Dr Monach: They are not identical, no, partly because of the technological intervention that is involved with assisted conception, partly because of the enormous stress which is engendered by a series of tests, a series of investigations. The impact on a couple's sexual relationship, on their personal relationships, their relationships with family and friends and so on, is huge when they are attempting to have a child of their own and require this sort of semi-public intervention, and other couples who, as you say, maybe have an unplanned pregnancy and so on, do not have that kind of scrutiny. We still as a society take a pretty privatised view about sexual relationships, family relationships and so on - quite rightly, probably - but it is one that makes the experience of being a patient with assisted conception as a possibility one of feeling very vulnerable and very open to criticism, to attack, and to difficulties of all kinds. I think that makes them a very special population. Q914 Dr Turner: May I put my colleague's question in a slightly more basic way: Are we not perhaps being a little too precious about this? Ms Crawshaw: I think there is a danger of pathologizing the experience and I do not think any of us would want to suggest that it has to be a pathologized experience. I think one of the difficulties, particularly where donated gametes are used, is that it is still an area that does not get talked about very much. Most parents, if they are bringing up their children, have the opportunity to talk to others in a similar situation: "How are you managing this? What are you doing in relation to that?" - which of course they can do for whole aspects of their parenting, but for the part of their parenting which may be about: "And how do I handle talking about this ..." where something may come up in relation to the genetic difference, a lot of those couples find that they do not have anybody they can talk to, unless they happen to have stumbled across DC Network or somewhere else. So part of the way in which we keep it as a relatively secret event I think does bring its own pressures. Of course there are not the services out there for people once they have left the hospital with their baby. There is not anywhere they can go unless they get into pretty major difficulties and have to start going to child welfare agencies or mental health services. We are looking at preventative stuff really. Q915 Dr Harris: Bearing in mind we are discussing the welfare of the child, PROGRA suggest the welfare of the child should be paramount in line with other legislation. But other legislation applies to children after birth. How would you reconcile this with the health of the mother? In this respect should an embryo have rights? Ms Cullen: One of the difficulties of being a coalition is that different people have contributed different bits to this evidence and I think it is not feasible to make the welfare of an unborn child paramount. I do not think that is a line we would like to take. I think what Marilyn said earlier about maybe adjusting the current very vaguely worded test about "considering the welfare of the child" to "considering whether the child might be at risk of significant harm" would be a step forward and would actually allow people to concentrate on the real issues, rather than having what clearly is a completely idiosyncratic approach in different clinics to what welfare of the child means. Q916 Mr Key: The level of state intervention in this country is considerably higher than in most comparable countries already, yet you are suggesting we need greater state intervention in what many people would regard as a private matter. Is there sufficient risk to welfare or indeed the interests and needs of children to justify the high level of intervention which you are suggesting is now appropriate? Where is the evidence for the risk? Dr Monach: The evidence is in such studies that demonstrate, for example, that infertility and childlessness generate the second highest levels of anxiety and depression of all medical conditions. That would include cancer, MS and everything else amongst long-term medical conditions. It is very serious in that respect. The effects are long-lasting and so it is something to be considered from that point of view that contributes to the enormous load of depression which this country is still grappling with in its health services. That is one part of the answer. The other part is that I do not actually accept your premise that we are the most onerous in our approach to these issues in the world. There are other legislations where there are considerably stronger provisions now about the provision of counselling, for example, which is the area we were suggesting strengthening. Q917 Mr Key: Can you give us an example of such a country, please? Dr Monach: I believe that is now the case in Canada and Victoria in Australia. Perhaps others would like to pick up other parts of your point. Ms Pike: In Canada the act has just recently been passed, but certainly everybody is expected to attend a counselling session. In Victoria everyone is expected to attend a minimum of two counselling sessions where donor-inception procedures are involved. Q918 Mr Key: Why do you think that clinicians at infertility centres are incapable of counselling their patients? Dr Monach: It is not a question of incapability. They are very capable of providing guidance and support, particularly guidance on medical matters; they are not capable of providing professional counselling, which is a very distinct skill which is learned through both academic and practical study. It is a problem of terminology. I know this is a semantic difficulty that counselling faces still in this country, but call it psychotherapy, call it counselling, as you will - it is called counselling in the legislation - they cannot provide that skilled assistance to people to explore their own feelings and their own approach to the issues that they face in a dispassionate way, that enables them to come to decisions that are truly their own rather than ones that perhaps reflect loyalty to family, loyalty to the unit, loyalty to their doctor or other such pressures. Professor Blyth: I can think of an entirely pragmatic angle to that as well: I think it would be very unlikely certainly that any clinician that I know of would have the time, let alone the necessary specific training, to provide in depth and continuing counselling, because, obviously, if they are doing that, they cannot be spending their time doing their main business, which is providing medical treatment. Q919 Mr Key: I would like to pursue this question of anxiety that you mentioned. Where is the evidence that depression and anxiety about childlessness is ameliorated by compulsory counselling? Dr Monach: Unfortunately, I must confess, the research evidence is not strong - which may say something about the priorities of research councils. But there are studies. For instance, I was looking at a study the other day that came from Turkey, one from North America, one from Australia, all of which demonstrate that counselling had a very significant impact on the levels of anxiety and depression experienced after IVF treatment. But I do not pretend that it is the strongest of evidence. It needs a lot more work doing. Q920 Mr Key: Thank you. Could I move on and comment on the fact that BICA wants to have fresh sperm hormone treatment within the act. Why not all treatments aimed at ameliorating infertility? Ms Pike: I am not sure that was actually what was said but I apologise if I am mistaken. Q921 Mr Key: I got the impression it was the point about fresh sperm and hormone treatment, because that is not currently covered. Dr Monach: If I may comment, one of the anxieties about fresh sperm is the activities of some private bodies that are providing services that may be very dangerous and there seems to be no way of regulating them. There is no way of ensuring they are screened for HIV and other dangerous pathogens. Q922 Mr Key: Do you have in mind a particular firm or company or organisation here? Professor Blyth: I think there is mention of one called Man Not Included. Ms Cullen: There is Man Not Included. Q923 Mr Key: We have heard of them. Dr Monach: Yes, I was hesitating. Q924 Mr Key: There is no need to hesitate here. Dr Monach: You may be protected; I might not be! Q925 Mr Key: Let's move swiftly on then. Do you think the European Union Tissue Directive will bring safeguards for people undergoing treatment currently unregulated by the HFEA? Dr Monach: My impression is it will, yes. It probably will but it is a scientific area that, to be honest, is outside our remit. Mr Key: Thank you. Q926 Dr Harris: In paragraph 13 of your evidence you say that you "consider that any future revision of the HFE Act should have a wider remit in relation to regulation and incorporate such assisted conception procedures as ... fresh sperm donation." That is why we suggested that your evidence suggested that you were in favour of this. You base this on the view that it is "very dangerous" - which I think was the term you used. Dr Monach: Yes. Q927 Dr Harris: I am a little surprised that you think that using fresh sperm to conceive is very dangerous. Dr Monach: I think I can see where you are going! It depends on the delivery system. I think that is my point. Q928 Dr Harris: No, because you said the risk was of pathogens, and I am afraid it is an occupational hazard of having sex. Dr Monach: Yes. Q929 Dr Harris: I am not sure why you feel that people who go to a clinic which has a reputation to protect, whatever you think of it, should be subject to greater control than those who go to a nightclub. Can you justify that? Dr Monach: Excuse the levity. I was not meaning to make light of your point. Q930 Dr Harris: That is all right. Dr Monach: I was thinking of an agency such as we mentioned where somebody is making a business out of delivering fresh sperm for treatment purposes. I think obviously there are different situations than one was talking about, other clinics that are involved with this, but clearly the medial profession has taken a view that you cannot ethically be involved in treating with fresh sperm because you cannot screen for all these different conditions that we are concerned about. That is something for the medical profession to answer on the decisions taken about that, not for us, but certainly our view would be that it is appropriate that any treatment that is going to involve assisted conception ought to be brought within the scope where it goes beyond the bounds of something that has a personal relationship where the state becomes involved. That is where we are arguing. Q931 Dr Harris: At the same time you have just said you do not want to pathologize infertility. It seems to me that you are coming from two completely different directions. You do not want to pathologize it, you are concerned about stigma generally in this field ---- Dr Monach: With respect, regulation does not pathologize necessarily. I find that a curious parallel. Q932 Dr Harris: The basis on which you wish this to be regulated is pathogens, because of the danger - which is the term you used - and then you expanded that. So I think it does. I think the basis upon which you wanted more regulation in this field, your initial reason for that, was because it was a dangerous thing pathologically. Dr Monach: I am sorry, I think this is confusing a number of issues. We are most concerned about those areas of assisted conception that involve donated gametes. That is the area that we are particularly concerned that all the provisions about counselling and the assessment that we have discussed ought to be strengthened from the position it is now. We wanted to go on to say that, because of the risks involved in some of the assisted conception, which is not regulated, we think it appropriate that people have the opportunity there, the active opportunity there, of counselling. We think all assisted conception treatments have an inherent - if you like - risk to their mental health as well as to their physical health. That is what I want brought in but I do not think that is pathologizing. Dr Harris: We will agree to disagree. The risk to mental health and physical health is suggested as pathology. I think my colleague wants to comment. Q933 Mr Key: Forgive me, if I may, Chairman. I find great difficulty with this approach. We are dealing with the practicalities of this, what is going to be the law. We know that up to 10 per cent of children are not the offspring of their putative father. Do we have to provide counselling for this unofficial donor service that we know exists in society? Professor Blyth: To refer to it as an unofficial donor service is a bit of a misrepresentation, if I may say so. Q934 Mr Key: Why? Professor Blyth: Because it is not a donor service, is it? That is not why people have entered into this relationship. Q935 Mr Key: But in your terms it is, because it is the donation of gametes. Professor Blyth: It comes back to a point I made at the very beginning, that, if people go to their nightclub and do whatever people do at nightclubs, the state has no responsibility for that. We are not saying that because we are taking a certain line in relation to people who are seeking to conceive through assisted conception units, therefore the rest of the population should be subjected to something. That is effectively a police state really. We are certainly not saying that. Q936 Dr Harris: I understand that point. So using fresh sperm is not a problem of the state. Are you not having a circular argument, because you want to involve the state by regulating it and then say that because the state is involved therefore there needs to be regulation and procedures. It seems to me that you create the situation that then sends some work your way - and I am talking to the counsellors here. Professor Blyth: What has happened in relation to ... I will not use the name of the organisation again, just in case. Q937 Dr Harris: Feel fee. I do not think it is a problem. Professor Blyth: The internet sperm banks were obviously set up to get round the regulation in the Act. There was no other purpose in setting up, other than to by-pass legislation, and I do not think anybody can regard that as satisfactory. I do think there is a qualitative difference between somebody having a good night at a nightclub, where presumably the intention is not to conceive - I guess very much the opposite - as opposed to going to an organisation like Man Not Included where the specific objective is to have sperm from who knows where and to conceive a child. I think that is a qualitative difference. Q938 Dr Harris: I have spoken to people who say they would rather use these fresh sperm services because there is some screening, which it is far more difficult to get from a stranger encounter, and, in fact, that they might consider using these services because of the change of legislation that will force them otherwise to have a donor that is identified, which they do not want. So there are other reasons rather than simply getting round regulation, although perhaps the second one is that. I want to raise another issue with you, the suggestion that BICA think that counselling should be made mandatory for assisted reproduction. We have covered this already, but clearly you must recognise that you have an interest, because it is creating more work for counsellors and therefore more members for you and therefore a bigger organisation. Ms Pike: I think that is a cynical attitude. Q939 Dr Harris: How do you solve the problem that here is an association of councillors saying: We want to force people to have counselling whether or not they need it and whether or not they want it in this field specifically. Ms Pike: Perhaps I could start by saying that I think that is a rather cynical view of counsellors and their profession if you think we would generate business for ourselves in this way. I would strongly refute that. Q940 Dr Harris: Do counsellors counsel for free? Ms Pike: No, they do not. Q941 Dr Harris: So I think it is realistic, not cynical, but, again, we may have to ----- Ms Pike: Disagree on that. Q942 Dr Harris: Yes, indeed. Ms Pike: Perhaps the term "mandatory counselling" is not the best way to describe it. I do not believe that you can impose counselling on anybody but I do believe that you can offer a realistic opportunity to people. At the moment the opportunity that is provided varies from centre to centre and I think it is important that people have an opportunity to attend an initial counselling consultation in order that ---- Q943 Dr Harris: How is that different, though? Because the current section 13, paragraph 6, I am told in this briefing, says that, "A woman shall not be provided with any treatment services ... unless the woman being treated and, where she is being treated together with a man, the man have been given a suitable opportunity to receive proper counselling about the implications of taking the proposed steps ..." That is what you just said, they should have the opportunity. Ms Pike: No. It is how you define that suitable opportunity. A suitable opportunity might just be a consultant mentioning, "You could go along to counselling, and here is your next clinical appointment." Or perhaps they are given written information about the counsellor. It is very much the way the counselling is described and delivered within each individual unit that will impact on the take-up rate of counselling. I do believe that, because there is still a stigma attached to counselling, there is a fear perhaps that people assume - and I think I have said this before - that they will be seen as not coping if they attend the counsellor. I believe that if that is made a routine procedure, just as routine as an initial clinical consultation, that they attend the counsellor and they are able to find out for themselves what is involved in counselling, it demystifies counselling, it allows them to identify any future counselling needs. To be sure, if they feel that counselling is not for them, there is no requirement for them to go any further with it. Q944 Dr Harris: You said earlier that you accepted, Dr Monach, that the evidence base that the efficacy of counselling in these circumstances was not strong. Dr Monach: In these. The evidence for the efficacy and effectiveness of counselling in a range of other circumstances is strong. Q945 Dr Harris: But in these circumstances. Dr Monach: Yes. I am being pedantic. Q946 Dr Harris: It could be argued that it is reasonable for government, before we impose a mandatory requirement in these days of regulatory burdens and all this, to ask for there to be evidence. Dr Monach: Yes. Q947 Dr Harris: You said there was not evidence because of these damn research councils - and as a committee obviously we hear this all the time - but is it not incumbent on the counselling industry to provide strong evidence, and, if necessary, if it is so critical, to fund it themselves. That is what people do. Dr Monach: Yes. I do not entirely disagree with what you say. I think it is very important that counsellors themselves develop a better research base than there is at the moment and it is partly because of timing: 14 years still makes infertility counselling quite a young profession and a lot of the emphasis needs to come from them. But, could I just come back to the other point, because I think you made an excellent point when you read out what the act says about a suitable opportunity. In a sense, our argument is not so much with the act, it is more with the code of practice within the HFEA, because I too do not see any reason why one should not interpret the meaning of what you read out as being precisely what we are arguing for and what Sheila described. It is because the code of practice does not interpret in that way, and clinics are quite happy to say, "Well, a suitable opportunity just means that we have a notice on the wall." From where we stand, a suitable opportunity would be exactly what you describe and we have argued for. Q948 Dr Iddon: What percentage of people undergoing the new technologies seek, or are advised and therefore seek, counselling? Is it very tiny? Dr Monach: It varies enormously, as Sheila said. We do not have any formal figures, but, wearing another hat, I am an inspector for the HFEA, and going around you look at the figures that are being generated and it can go from anything like two and three per cent right up to 40 per cent, and it entirely depends on the attitude and the practices of the clinic. If those in the clinic are keen, they are motivated, they understand what the counsellor offers, they are enthusiastic and they do not just stick a notice on the wall, then a lot of people will take up the opportunity. It is back to the point we were making earlier really, that unfortunately the perception is still that counselling is a demonstration of weakness and not a strength. Q949 Dr Harris: If I may come back to this evidence point. Dr Monach: Evidence about ...? Q950 Dr Harris: Evidence about the efficacy of counselling, mandatory or otherwise. Given that the HFEA, on issues around egg giving, say, "Where is the evidence that this provides better results in their evidence base?" it would not be unreasonable of us, surely, to recommend that we do not go down this "more counselling" path and say, "Come back in ten years when you have the evidence that it is useful" because it is a burden. Dr Monach: I can say to you quite conclusively that there are lots and lots of studies now that say that the increase in depression and anxiety amongst childless couples is very significant, is more significant than most other long-term medical conditions. You can say, on the one hand, that is clearly demonstrated, and on the other hand you can say that counselling is now very well established as effective as a first-line intervention for people with anxiety and depression. Those two are quite indisputable in the literature now and therefore I think it is quite possible to put those two together, even though not much work has been done on the infertility-driven depression and the counselling. Q951 Dr Harris: I am not against counselling, I am just saying that, in other areas of mental health, unless they fall under the act they do not have mandatory treatment. I am surprised that you are arguing that in this particular area of ------- Dr Monach: Sorry, your question was about the literature. Q952 Dr Harris: -- mild to moderate mental health problems (that is, depression based on infertility - given that you accept the stigma, which, if you force people to go down something that stigmatises, for better or worse might be a barrier for treatment) there should be mandatory treatment. Dr Monach: No. Ms Pike: No. I think you are pathologizing now. We are not talking about mandatory treatment at all. I think people should be required to attend an initial consultation, an initial counselling consultation. Q953 Dr Harris: All right. I am going to move on to the issue of donor anonymity and ask again what the evidence was and what studies you are aware were done by the HFEA that showed that this would be in the interests or the welfare of the child produced by donated gametes. Professor Blyth: We need to recognise that the decision about anonymity has been made by government already, so to some extent we are talking after the horse has bolted, so to speak. Given that proviso, there is certainly increasing evidence, based on a number of small-scale studies - and I guess I am likely to fall into the same difficulties as colleagues have earlier in relation to convincing you that there is sufficient empirical evidence. The whole problem about getting empirical evidence in relation to anonymity is that, because the practice has been characterised by secrecy and anonymity, that has presented a very major barrier in undertaking any research anyway. With that proviso, the information that we do have is from a number of studies in this country, in the United States, Canada, Australia and New Zealand, which indicate that people who have learned about their origins, from a variety of ways, sometimes in adulthood, sometimes by accident, sometimes as a result of family disagreement, have actually experienced extreme psychological discomfort because that information had been withheld from them previously. Q954 Dr Harris: That is the point. Because it seems to me, from my understanding of the evidence, that there is at least a series of cases, which one might describe as anecdotal, of people who feel they have been damaged by the secrecy - by the fact that they have not been told - as well as - but mainly that - not being able then to identify, somewhere out there, their fathers, say, in the case of donated male gametes. There is some evidence I have also seen that ending donor anonymity makes it more likely that parents will not tell the child of the fact of their gamete-donated origins. That is therefore more secrecy and runs the risk of the secrecy being discovered. Would it not be logical, on that basis, to force parents who are using regulated gamete donation, where there is no longer anonymity, to tell the children of the fact at the appropriate age so that they can then trace their parents? Professor Blyth: I am sorry, I got a bit lost in terms of the actual question. One of the points you said was that you were aware of some evidence that said that parents were less likely to tell their children. I would be interested to know what that is because I have certainly not seen that. Q955 Dr Harris: If people who have been asked, "Why do you not tell the child?" say, "Well, we don't want them to go off and look for the other parent," that is understandable. Professor Blyth: But the evidence that is available is very much the other way. The evidence that is available is that parents are reluctant to tell their children because of the very little information they have about donors, both in terms of non-identifying information that they have been given themselves and particularly if they do not know the identity of the donor. That comes through time and time again, that one of the reasons why parents do not want to tell is because they are opening a can of worms, because they will not be able to answer the follow-up questions these children will have - which will be information about the donor and information about the identity. Anticipating the next session, there is a very recent piece of research, of which Professor Golombok is a co-author, which shows quite clearly that parents who have told their children report far fewer difficulties in terms of their relationship with their children and their children's development than parents who have actually not told their children. So we have the evidence ------ Q956 Dr Harris: I understand what you are saying. I would be interested to see the evidence, so feel free to send it in. Should we not now, because of all these benefits of this openness, just tell the children? You do not have to get the parents to do it; you just tell the parents that the register will contact the children and tell them at the age of 16 or 18. Win, win, win. Professor Blyth: No, I have not said that at all. I think that is a gross interference in terms of parents' responsibilities towards their children. Q957 Dr Harris: But children have rights. Professor Blyth: Parents ought to be strongly advised that the evidence suggests that it is better if children are told. You will have heard this from organisations like DC Network. Q958 Dr Harris: I am not arguing with you, I am just asking why you do not take the next natural step. Professor Blyth: It is not a natural step. Q959 Dr Harris: Which is to tell them and then give them mandatory facts. Professor Blyth: With all due respect, that is not a natural step for the state then to disregard parental wishes and say, "Well, we are going to find some way of telling these children anyway." Q960 Dr Harris: If parents want anonymous donation, do you think the state should disregard parental wishes in those circumstances, on the basis of what is, at best, shaky evidence. Professor Blyth: Yes, I do. I do not think - as indeed the Government have accepted - that continuing the availability of anonymous donation should be permitted, because, for all the reasons we know about, that is not conducive to children's welfare. Ms Crawshaw: I would want to come in to say, on contacting children at the age of 16 or 18, that I would be more concerned about it from the point of view of that individual: if they suddenly get a letter out of the blue - or however you are suggesting it - when you do not know whether or not they do know, because obviously one of the concerns we have is about unplanned or accidental disclosure of information at a later age anyway. I think it would add into something we are concerned about, that we know from the adoption field - which is not the same, but which is the closest professional experience that we have - of the need for intermediary services at the point at which people may be receiving information from the register or elsewhere about their donor. I think that is very difficult for people to manage by themselves. We know from adoption that it is very helpful to have intermediary services. One of our concerns would be if that remains as an offer at that stage as well, rather than that the services are there are and provided and people should have them. Q961 Dr Harris: My last question is about the consultation that is forthcoming on payment for gamete donation. What would you want to result from that? Do you think the issue of the ending of anonymity should have a bearing on the question of the level of expenses that are paid? Professor Blyth: In terms of expenses, our view would be that all legitimate expenses should be reimbursed. We certainly would not want to move to a situation that then moved into what might be seen as the commodification of gametes or embryos. We would want to ensure that that distinction continues. That has been a hallmark of the provision in this country. Reimbursement of legitimate expenses. Q962 Dr Harris: If the ending of anonymity causes a real drop in the supply of donated eggs - and that has been postulated, and, indeed, some people are telling me that has already happened - do we just say, "Well, people will not get treated" or do we say, "Let's raise the level of expenses" - or be honest and call it "payment" - in order that, again, it is a win-win: someone gets the money/someone gets treated. Professor Blyth: I can understand why you are commenting in that sort of way. Our point is that we would see the reimbursement of legitimate and reasonable expenses. I take your point entirely, and one could move into the American system where you pay "the market rate", but, albeit that it may impact on supply, we are certainly not into recommending paying the highest bidder. Ms Pike: I would certainly agree with Eric and see payment as a commodification and, as such, a very unethical approach. I do not see how you can remove anonymity and say that we are doing this for ethical reasons and then try to solve the consequences in such an unethical way. Dr Harris: You pay the doctors, you pay the counsellors, you pay the cleaners - everyone gets paid except the donor. Q963 Mr Key: On the question of parents telling children how they were conceived, we know that the majority of parents who are seeking to access treatment with donor gametes say they will tell their children because they perceive that is what the counsellor wants to hear; whereas we know that the overall majority - round about 85 per cent - do not in fact tell. Ms Crawshaw: I do not think we do know. I think that is one of the great difficulties in the whole of this area where you are trying to influence policy and practice on the basis of quite a lot of unknowns. Certainly, anecdotally, if you talk with people in clinics, even over the last five years I think there has been a very significant change in the numbers of people coming forward for treatment who are saying, "We intend to tell," and I do not think that is just because they think that is what they should say. I think there really has been quite a change and it is more them thinking about "How do we go about telling?" because that is a complex area. Q964 Mr Key: Finally, interestingly PROGAR have challenged the legitimacy of this Select Committee, saying that because we do not have MPs from all four countries of the United Kingdom therefore it is a democratic deficit. May I gently point out that PROGAR's representatives do not either come from all parts of the country. What is the point you are trying to make here? Ms Cullen: I do not think it is a real point. Q965 Mr Key: Why make it then? Ms Cullen: We are in some embarrassment about that in terms of the three of us here not having ourselves written the evidence. Q966 Mr Key: There must have been a deep reason why you thought it was a point worth making, even though it was perhaps made in jest. Ms Cullen: No, it was not made in jest, but there is a point about the complication of some areas being half-devolved, like the regulations which dictate at what age a person born as a result of surrogacy or through donor-assisted conception will access the information, because the Scottish one is paralleled on the Scottish adoption law and the English one is posited on the English adoption law. I do not think it is actually a huge issue, as long as there is an awareness within the HFEA (or whatever body might replace it) of the distinctions and the guidance that gets issued to clinics and to users, that there is not uniformity between the four countries, and the differences will get greater because things will get more different probably in Wales as well. Mr Key: Thank you. I think that is a very sensible point. Q967 Dr Iddon: Finally, if people get frustrated with the struggles against quite tight regulation in this country - and after all we are ahead of the field - they will just pack their bags and go abroad. What do we do about that? Do you think that is important, reproductive tourism? Ms Crawshaw: It is a very real issue and I do not think we would pretend to have any answers around it. We are hearing of clinics that are setting up links with clinics in Europe and then saying to people, "You can go and get your treatment there and get round the anonymity, if that is what you want to do." It is extremely difficult. I do not know what the solution would be. In adoption we had a similar problem of overseas adoption and learned some very hard lessons from it with some children and families who really got into some quite deep difficulties. I am not suggesting that would necessarily happen, because we do not know, but I think it is a concern. Q968 Dr Iddon: Should we legislate? Dr Monach: We already do in terms of importing and exporting gametes themselves. But, in terms of the people going abroad for treatment, I think that would be very difficult. That would be our view. It would take us into a really major set of obstacles really. Q969 Dr Iddon: You have no answer to the parliamentarians? Professor Blyth: It is difficult, even as parliamentarians. Well, I say "even" - I mean, from where I am sitting you are far more powerful people than I am in certainly trying to change things, but, even so, we do have to recognise the limits of these. You talk about reproductive tourism in the sense of thinking of people from the UK going elsewhere, but we also need to think that we currently have a very liberal system compared even to many western European countries and the UK is also the destination of a lot of people. I do not know if anybody does know the figures, but people do come into the UK for treatment because it is not permitted in their own countries. I am thinking of countries that do not allow egg donation, for example, that do not allow embryo donation, countries there they are far more restrictive on sexual orientation and marital status in terms of accessing particular assisted conception procedures. I should not go so far as saying the UK is a magnet to people in those sorts of situations but we know there are a lot of people who come to the UK for that as well. I do think it is a difficult issue and probably there are elements of that that no individual country can successfully legislate for. We just have to accept that. Dr Iddon: It sounds like a debate for another day. Dr Turner: On that note of controversy we will stop this session. Thank you very much for your contributions.
Examination of Witnesses
Witnesses: Professor Susan Golombok, Family and Child Psychology Research Centre, City University, Dr Sarah Parry, Centre for Social and Economics Research on Innovation on Genomics, University of Edinburgh, Dr Tom Shakespeare, Policy, Ethics and Life Sciences Research Institute, Newcastle University, and Professor Martin Richards, Centre for Family Research, Cambridge University, examined.
Q970 Dr Turner: Good morning and we welcome you to provide us with further evidence for this long-running saga and inquiry we are conducting here. We would like to question you, ladies and gentlemen, particularly on your view of the evidence base for the social dimensions of human reproductive therapies. I would just like to start with an opening question. We know that the UK is culturally very diverse, so there is a wide spread of opinion in public on moral issues and so forth. Do you think it possible to legislate, given these differences, with one framework, one size that fits all, given the enormous variety and, if so, what are the underlying principles that that framework would provide? Dr Shakespeare: I would say that almost anything that Parliament legislates on there is widespread disagreement. The example is gambling currently being considered. Nothing you do will satisfy everyone, which makes it important that when you do legislate, you give reasons and try to pass laws with a view to the harm they may cause or prevent. I think people will have deeply-held moral reasons, for example to do with embryos and abortion, but that we can establish a broad consensus. Professor Golombok: If you are talking about diversity in terms of types of families that exist as a result of assisted reproduction, yes, certainly there is great diversity. I think it is possible to have some underlying principles and these should be based on the psychological wellbeing and welfare of the child. I think what matters is the quality of parenting and family life that can be offered to these children, irrespective of the variety in terms of family structure. Q971 Dr Turner: Do you think that the potential psychological impact associated with human reproduction therapies justifies the level of regulation that we have and which we may be contemplating? Professor Golombok: I am not sure exactly what you are contemplating. Q972 Dr Turner: We are reviewing the legislation. Professor Golombok: I do not think it justifies any greater regulation than we have already because I just think the evidence is not there that there are particular problems for doing so. Q973 Dr Turner: What is your view on the effectiveness of counselling? How useful do you think that is? Professor Golombok: I was very interested to listen to the request for evidence. My own view is that in all of these debates evidence is very important. I think there is not a great deal, certainly in the field of assisted reproduction. I agree with the point that was made that there can be high levels of distress and problems following assisted reproduction, but these are mainly for people who do not then want to have children. It is important to differentiate between those who are successful in treatment and those who are not. For those who are not, the evidence seems to be that, yes, it is very difficult and distressing but, over time, this diminishes, albeit there is a small minority left with long-lasting problems. I do not think it is right to assume that everybody who has unsuccessful treatments will then be plagued by all kinds of psychological problems for years to come. There are two issues in terms of efficacy. I do not think, as has been said, that there is a great deal of evidence that it is beneficial, but that does not mean that, were good studies to be carried out, that would not be found. I think it is also true to say that many couples entering fertility treatment do not actually want to have counselling. My own view is - and this is not my field but you have asked about it - that counselling should be available to those who want it but not necessarily mandatory. Dr Turner: You do not think there is the evidence base to justify making it mandatory. Q974 Dr Iddon: To follow on from that, do you think there is an adequate evidence base to use social research policy to formulate legislation in this area? Professor Golombok: It is difficult to speak about that broadly. It would depend on particular aspects of legislation. I am not quite sure what you mean. Q975 Dr Iddon: Obviously I am talking only about assisted reproduction. Presumably social research has been used to formulate policy in this area. Is that correct? To do that, has the evidence base been robust enough? Professor Golombok: In some areas yes, in other areas no. We were talking a little while ago about removal of donor anonymity and evidence, although there is obviously a dispute about this, on the one hand or the suggestion that this might be bad for children, and on the other that it might be good for children. There is not actually a great deal of evidence because we do not know much about those who are screened who are aware that they are conceived by donor gametes. Q976 Dr Iddon: Is that because of the confidentiality provisions which are built into the HFE Act? Is that making social research very difficult in this area? Is that what you are saying? Professor Golombok: I do not think it is making research difficult. Professor Richards: I think in some specific areas it makes it difficult. Routine follow-up of all children, which has been discussed and seems to be desirable, is made more difficult under the current legislation, but I would go back to the earlier point: this really depends on exactly what issue we are talking about. If we are talking about preimplantations on a diagnosis, and I think round about 50 children have been born so far from that technique, we know very little about it. There is no way we can know more until more has been done. If we look at some of the issues around IVF, there has been good practice for many years; we know a good deal more simply because we have more chance to do the research and the numbers are bigger and so on. It is not an issue on which I would want to generalise. Q977 Dr Iddon: This is to you, Professor Golombok. About 1% of babies born in the UK are the result of IVF and the overwhelming majority of these are the offspring of heterosexual parents using their own gametes. Taking that into consideration, do you feel that the public anxiety is misplaced about these technologies, perhaps even discriminatory? Professor Golombok: Do you mean because there are so few of them that in a way too much fuss has been made about it? In a sense, that is true because the numbers are pretty small. On the other hand, if these procedures were producing children with very severe problems, either physical or mental problems, then I think it would be right to be concerned. The evidence so far is that in fact the children do not experience higher levels of psychological problems. Apart from possibly some very specific techniques, neither do they experience high levels of physical or health problems. From what we know so far, and I have to say it is not a huge amount, particularly as the oldest children to be studied are still in their teens, I do not think there is huge for concern. Q978 Dr Iddon: Is it time to abandon the precautionary principle in this area? Professor Golombok: Not necessarily because we do not yet know about long-term effects. Q979 Dr Iddon: This is to Dr Shakespeare. You suggest that the welfare of the child argument should rely on empirical evidence yet you support a ban on social sex selection, even though you find it difficult to see any major harm in family balancing. How can these views be reconciled? Dr Shakespeare: I think that presumably the way to make legislation is to balance empirical evidence, normative judgment and also pragmatism. It seems to me, from the research we have done, that there is very wide public opposition to non-medical sex selection, that people are not ready for it and they are not happy about it. I spoke to the British Society for Human Genetics a few years ago and overwhelmingly the members were against social sex selection. Empirical research with focus groups throughout Britain showed 85% of people against social sex selection. The more they discussed it in our focus groups, the more likely they were to be against it. Although there does not seem to be evidence of strong harm and there does not seem to be a strong moral case against it, I feel that it would bring the profession into disrepute and it would cause considerable lack of confidence in the both regulation and provision of services, so for now I do not think you should allow it. Q980 Dr Iddon: You are very firm on that, obviously. What percentage of the population has been studied to reach these views? Dr Shakespeare: The HFEA did a large representative survey. I do not know what the response was. They found that people were against it. Ours was a much smaller survey. The evidence seems to be consistent that people are against it. Maybe that is because they have not thought it through enough or because society is not ready for that, but for now that would not persuade me. Q981 Dr Iddon: Is that the general view? Do any of our present witnesses disagree with Dr Shakespeare on that? Professor Richards: I would slightly disagree in the sense that this is an area where I think, if you look at things historically, there is change. The point I made in my evidence was that when Louise Brown, the first IVF baby, was born overwhelmingly I think it fair to say public opinion was against. People thought this was outrageous, dangerous and against nature. A wide range of arguments was used. We know that attitude has changed. It has changed largely because there has been contrary evidence. People have seen many stories in the newspapers and many people actually know IVF babies; they know couples who have been helped with those techniques. Many people come to accept the technique for various reasons. I think we are in danger of being in a rather circular situation here. It seems to me inevitable that social selection will come. You can travel and get it in the States now and some people have already done that. I think it will be changed. I do not necessarily agree with the point that Tom Shakespeare is making about the present, but I think we can predict on fairly good grounds that this matter will change. Q982 Dr Iddon: Hopefully I am reliably informed that the HFEA had about 580 responses. That is a very small sample. Professor Richards: The point has already been made that we do have many studies, some with really rather large samples that have looked at public opinion. The results are very consistent: about 90% of the population think this is not something they would wish to do. A somewhat lower percentage think no-one should be allowed to do it. Dr Shakespeare: The figure of 580 is quite a good response when you consider that on their PGD consultation they only got about 150. I would say for a public consultation that is not bad. Q983 Dr Harris: What you are saying, Dr Shakespeare, is that Parliament should legislate on the basis of public opinion in areas like this, for the reasons you have given: confidence in the profession and all that. Dr Shakespeare: I think it should certainly inform your judgment. I do not think you should just do what public opinion expects. You do not support hanging presumably, despite the fact that the Daily Mail readership might want it. I think you need to balance public opinion with the moral arguments and with the evidence. Q984 Dr Harris: You have balanced it and you have decided that if you were in our place you would not support at this point allowing sex selection. Your main argument, as you have set out both in your evidence and now very clearly, is that because public opinion is against it, there is a knock-on effect on confidence in the technology, the system and regulation and so forth. I suspect, I am not certain, that there are currently, or at least there were, similar public objections to lesbian parenthood. That would not surprise you. If I can use another social example, there is probably a similar degree of public objection to the promotion of the acceptability of homosexual relationships as a basis for family to young people in schools. Indeed, the Scottish situation is overwhelming. Would you, on that basis, come to the same conclusion that we are not going to have faith in school sex education if we people are not happy that they are being peddled the right sort of stuff? We are not going to have confidence in clinics if we think they are treating lesbian and gay people? Dr Shakespeare: I think public opinion has changed massively on the sexuality issue over the last ten years. I would contest your assumption there. Q985 Dr Harris: So section 28 is OK for the climate? Dr Shakespeare: No, I do not think it ever was OK. Q986 Dr Harris: The point I am making is this. Fundamentally, if something is right to do, then we should not go on what the climate is because that is quite risky for minorities? Dr Shakespeare: Your point is very strong. I think that the evidence of harm against social sex selection is not strong, but nor is the evidence of benefit, whereas I think we should not restrict the right of people to have children, lesbians to have children or gay people to have their freedom of sexual expression of family life. They are two different things. One is: should we stop people enjoying rights as private individuals to found a family, to live with each other, or whatever. The other is: should we be able to allow people to do something which they could not do otherwise? Should we assist them to do things? It is evenly poised but I would come down against assisting people on social sex selection. Q987 Dr Harris: I am aware that Dr Parry has not answered yet so feel free to chip in even it is not your field. Dr Golombok, what is your view on this issue of selection? I know it is not your field of research but I want to see if we can read across because my understanding, from what you have shown, is that if we moved away from the welfare of the child, and we have defined that as waiting until there is clear evidence of significant harm, or some evidence of extreme harm, or a lot of evidence of moderate harm, something like that, so reversing the precautionary principle, and say we are going to permit this, on that basis we would have dealt with the issue. Let me generalise the question more because I think my colleague is going to ask about sex selection more formally. Do you think we should reverse the precautionary principle and say that we should respect reproductive freedom until there is evidence of harm? Professor Golombok: You are implying that I am saying we should wait until there is evidence of harm because we do not know yet. I think that actually there is quite a lot of evidence that there is not any harm. Q988 Dr Harris: Until your studies were done, let us say that there were not many lesbian parents out there, I know there are for other purposes, you can envisage a situation. What do you think of the current provision? Professor Golombok: I think you can generalise. There may be in particular instances the kinds of families you do not know much about but one knows generally from the whole body of research and theory what matters in terms of parenting, in terms of good parenting, in terms of positive outcomes for children. I think you can feed that in as well. I know that is not quite answering your question. Q989 Dr Harris: Let us take older mothers. Is there any evidence that treating women in their fifties is bad for the welfare of the child and therefore should be restricted on that basis? Professor Golombok: There is no evidence because no studies have been done, so we do not know, but I think we do know quite a lot about what it is about parenting that is important for children. On that basis, I would say: yes, perhaps we should reverse it because we would not necessarily expect problems for children just because their mother is a bit older. Older mothers might make better parents. I suppose the short answer is: yes, I would agree. Q990 Dr Harris: Dr Parry, do you have a view on that? Dr Parry: No, I do not want to overextend my expertise. I am not familiar with any of the studies. Professor Richards: I would broadly agree. I think history is important. When IVF began, there was no regulation and so it could be done. The regulation came later. There always has to be a first time for something. We are never going to have a full body of evidence the first time we do things. As Professor Golombok has said, we can often make reasonable guesses on the basis of other related work. If we are looking at the technologies themselves, there would be animal evidence and so on. I think we can never be, as it were, in a fully secure situation when we begin to do new things. Q991 Dr Harris: We had a different view from Professor Brazier on the issue of older parents recently. Your view would be that you would be happy or keen to see a reformulation of the welfare of the child provision that was more permissive in these areas where there is little evidence either way until there was perhaps a research programme going along with it so that we could identify early any unexpected effects? I am trying to get a clear steer from social scientists. Professor Richards: I would say two things. The gathering of the evidence as whatever it is we are talking about happens is an important part of it, but I think the appropriate policy would be, as it were, cautiously and slowly to allow the age to rise, collecting evidence as we go. Probably here we are talking about a relatively small difference for children. Having a parent who is going to be well into the closing part of their life by the time the child gets to teenage years is probably not socially ideal for children. That would be my reason for saying that we allow some increase in age. If you were faced with a 90 year old tomorrow, I think that would be a jump too far. You could say clearly that person is unlikely to be around to carry out the roles and duties of a parent throughout the early part of a child's life. Q992 Dr Harris: What about a 25 year old married woman with a terminal illness who required IVF? Professor Richards: Clearly you could say some of the same issues arise. Professor Golombok: I agree with Martin Richards. The other thing I would like to say is that there has been a huge number of assumptions about what would happen in these families. Assumptions have generally assumed that bad things will happen, which has not turned out to be the case, after no more than 20 years of children being born in this way. From that point of view, then I would agree that perhaps we certainly do not need to "up" the regulations and perhaps we should move in the opposite direction. Q993 Dr Harris: On this issue of donor anonymity and the evidence base - I know this is something that you have looked at - you heard the exchange earlier that I had with the previous witnesses who felt that on what I think is the key issue of secrecy, secrecy is likely to be reduced and that more parents are likely to tell their children. I heard the figure was around 80%, as Mr Key did. It is more likely to be reduced because parents will now have something to tell their children and say, "I feel happier about any of this because you can go off and find him". The implication was that there was evidence for that rather than the other way round. Professor Golombok: There is not really. We do not know yet because things have not changed yet. Certainly, on asking parents about their feelings as the current law stands, you get a diversity of opinion about that because some parents say, "Oh, well, it will much better because then the children can find out about their genetic origins. Therefore it makes it easier for us to tell them because they can then go off and find whatever they want to find out about the donor". Others will say, "Well, actually, this might make me less likely to tell them because, although it will ameliorate the secrecy, I am not sure how I feel about the possibility that they will be able to identify the donor". We have heard both of these things coming from the parents in our study, but it is all very anecdotal. I really could not say what proportion felt they would act one way and what proportion felt they would act the other. Q994 Dr Harris: So this change in the law could equally stand a good chance of helping and or making it worse. On that basis,, do you think it was sensible to make the decision now rather than get some research done? Professor Golombok: I think it might have a better chance of helping, but some parents would not want to tell their children. For those parents who do want to tell, at least their children can find out about their donor. I would hate to see the idea of parents being forced to tell, which was also discussed. Professor Richards: I would broadly agree with that position. I do think there is an important issue. It seems to me the strongest area where we have negative evidence at the moment is the group where there is discovery later on, which is unintended discovery. We know some of those people become very disturbed. Q995 Dr Harris: That is a consequence of the secrecy? Professor Richards: It is a consequence of the current situation. Q996 Dr Harris: Are not those cases a consequence of the parents not telling the children and the children then finding out there was this secret? Professor Richards: I think the children discover two things. Certainly the secrecy is one of the things that upsets children but I think what they discovery too, the fact that there is something there that they feel is very important, in itself is important. I think the evidence, by and large, is that for children who learn these things early on and grow up in the knowledge, you find that a sudden discovery later in life --- Q997 Dr Harris: Even without being able to identify the donor? Professor Richards: Yes. I think again we are in a situation where to some degree the culture is changing, as everything else. Today we put a stronger weight on our origins, including our genetic origins. I think that lends pressure to the argument to say that we should be open about these matters. Some of it comes back, of course, to the kind of support and information parents get at the beginning about, as it were, the benefits of what may happen when they tell them. Q998 Dr Harris: As a result of what you have both said, would a hybrid system be better, so that for those parents who have the intention at the outset of telling them, they could go for an identifiable donor and they would have something more meaningful to say, and for those parents who really are not going to tell, and I do not think any of you have argued that parents should be forced to tell their children, then they could choose regulated donor anonymity rather than going abroad, like the Danes go to Sweden or whatever, or go to "man not included"? Professor Golombok: I think there are problems in that because those children whose parents have opted for a non-identifiable donor who then found out would be at a disadvantage and might be even more concerned about it because they would know that their parents had the choice and then opted for the non-identifiable donor. It is not that straightforward. Q999 Dr Harris: As was said earlier, tens of thousands of children who have not been told do not know that who they think is their father is not their father. Is society failing in some areas because of this? Is this a real problem? Professor Golombok: I do not think it is a very big problem. Dr Shakespeare: I think it is. I think parents should not lie to their children, should not conceal the salient things from their children, and we should not create a situation where children have no means of finding out who their biological parents are. Obviously, we cannot do anything, or very little, about illegitimacy, but it seems to me we have an adoption register. This discussion has mainly been about the rights, choices and possibilities for parents. I do think you should be mindful of the rights of children and future children who may be created. I do not have empirical evidence. I have had a number of conversations with children born of anonymous donor insemination who have had no way of finding their parents and who are hugely distressed by it and that impacted deeply on me. I think there is a moral point about not preventing the possibility of tracing them. Professor Richards: To make one other point, I think we have to recognise that DNA paternity testing is part of the culture in which we live. Although that may be regulated in the UK, if you have access to the web and a credit card, you can do what you want effectively. Q1000 Dr Harris: You can steal a bit of hair from your putative father? Professor Richards: Indeed, and there are websites where you are encouraged to do that. Dr Shakespeare: It is illegal. Q1001 Dr Harris: It is unlawful under the Human Fertilisation and Embryology Act. Professor Richards: Is it an Act or is it still a Bill? It is still a Bill. Q1002 Mr Key: There is a lot of hunch about today and lot of dogma about as well, as always in this place, but how can you find out if, not knowing that you are the result of donor gamete treatment, it is harmful or neutral? Is there any study you can think of that could be done that would help us? Professor Golombok: Yes. We have already been doing such studies because we have been following up large groups of donor-conceived children, the majority of whom have not been told and do not know. So far, they all seem to be doing perfectly well. I would not necessarily like to use that as an argument against identifiable donors but certainly studies are being and have been done. Q1003 Mr Key: Why should the rights of donor-conceived adults to identifying information trump the rights of the donor to anonymity, or indeed the social parents to maintain secrecy if they wish? Dr Shakespeare: It seems to me the main reason against their anonymity is that the people who used to donate were 18 year old or whatever students, and now they will not because they do not want to be traced. That seems to me to suggest that we need to be more imaginative about recruiting donors. We may need to think about the ways in which the law or the trust or agency, or whatever else it might be, needs to be formulated to protect donors. We may need to recruit, for example, perhaps older men who have had a family and who want to be altruistic rather than relying on students who want £10. Professor Richards: One might add to that there is a small amount of evidence of donors who later regret it. These young men later of course may be come parents and at that time certainly I have heard directly of cases where there has been a good deal of upset about what is going on. I also went to talk to the mother of a donor who discovered some time after the event that her son had been a donor. She basically was outraged. She said, "How can I walk down the street knowing that any pram I pass might contain one of my grandchildren?" Q1004 Mr Key: Thank you. Could I turn now to surrogacy? We had Margaret Brazier in front of the committee on 27 October. She talked about the regulation of surrogacy and said she would like to see it looked at again. She, of course, chaired the Government's Surrogacy Review that reported back in 1998. You, Professor Golombok, were a member of that committee. Margaret Brazier said that a great deal had changed, particularly Professor Golombok's most recent research into children born as a result of assisted reproduction. Could you tell us about that, please, and what you found? Professor Golombok: I am not sure what she meant by "a great deal of change". We have been conducting what I think is the only controlled longitudinal study of surrogacy families in the world. It is very small, I have to say, but we do have a representative sample of commissioning parents and their children and we are also interviewing surrogate mothers themselves. These children are only just three or four years old. So far, it seems that the commissioning parents have very good relationships with their children and that the children themselves appear to be functioning well and are no different from any other children, but there are all kinds of issues that are very important for these families, the main one being that the children are still too young even to know about the way in which they were brought into the world. There are other issues that may impact on their wellbeing later on. I think the story so far is: so far, so good, but really they are still very young. Q1005 Mr Key: Do you think there should be a distinction between full and partial surrogacy when it come to regulation? Professor Golombok: No. Could I say why? We are concerned here about the welfare of the child and the family in which the child is being brought up. I do not think, in terms of quality of parenting that is made available to that child, that we really have any reason to believe it would be different in terms of whether or not surrogacy was full or partial. Professor Richards: I would slightly differ. Clearly, in terms of genetic origins, which is something that is much talked about in this area, there is a difference. Given what we have been talking about, donor anonymity and so on, if the surrogate is also a donor, it seems to me that is somebody in a different position than if the surrogate was simply a surrogate. Q1006 Mr Key: I would tend to agree with that view. Could I ask about this question of payment and reimbursement of reasonable expenses under the current British law? If you have full surrogacy, should there be any difference in the approach to payment here? Is it any more or less altruistic in the case of full surrogacy and should that be reflected in what the law says about whether you can receive payment? Professor Golombok: The reason we felt that payment was not necessarily a good thing, other than general expenses, is that for women who were the surrogates, often they might enter into the surrogacy arrangement not being fully aware of the risks and might be motivated to do so by the prospect of payment and later perhaps come to regret what they had done. That was one of the reasons we felt payment was not necessarily a good thing, and also that the whole practice of surrogacy might turn into a bit of an industry. Mr Key: Is there any evidence from elsewhere in the world, for example the United States where some states treat it quite differently, do they not, in terms of making surrogacy arrangements enforceable by law in a way that they are not in this country? Have you studied that? Do any of you have any knowledge of the American system? You do not. Q1007 Dr Iddon: If I could turn to Dr Shakespeare again, you suggest that primary legislation should be broad and flexible and that the details should be left to the codes of practice. I think you believe that that is what we have at the moment. Can we clarify that? Dr Shakespeare: I do not think I expressed it in those ways but, yes, I think it is difficult to anticipate subsequent technological developments, so I think yes, breadth, and then leaving it to the HFEA to issue particular rulings. Q1008 Dr Iddon: Have you tried to measure the success of the present legislation in those terms? Dr Shakespeare: No. Contrary to what Mr Key said, we do not have a more restrictive system than in other places. We actually have a fairly liberal system. As I said in my submission, I believe we have the balance about right. It seems to me, from my discussions with fertility specialists, that some of it is over-bureaucratic; for example, having to license every test or having to write to GPs in terms of parents' suitability under the welfare of the child. It could be loosened and made slightly more liberal in those ways, but the general thrust is right. Q1009 Dr Iddon: Can I ask the rest of our witnesses whether they agree with Dr Shakespeare or is there any disagreement? Professor Richards: I would broadly agree. One other argument one could use here is to look at parts of the world that have looked to our system and have adopted very similar systems. To some degree, we have provided a model for quite a lot of the world outside. It does seem to me it is a model that is workable. One other aspect of this is to do with innovation. One of the great difficulties if one does have an open system is that innovation may happen sometimes in quite disastrous ways. Q1010 Dr Iddon: There is a feeling that technology is reaching ahead of the legislation and that the HFEA are making decisions that are unpopular with the public. Do you agree with that? Professor Richards: Technology is clearly changing and that produces new challenges for regulation. We have already had an instance where the legislation did not cover something that many people believed it should cover. I am talking about cloning of course. It seems to me that one of the benefits of our system is that one can take a cautious, regulatory approach to new developments and allow them to occur in an atmosphere, in a context and with appropriate regulation, which would not be possible if there were no regulation at all. If things happened that people did not like, we would simply have to legislate repeatedly for all sorts of new development perhaps. Q1011 Dr Iddon: What this committee is considering is the present Act applicable to the modern age, or is it out of date and, if it is out of date, how should we change it? Have you any views on that or any advice to the committee or should we leave the present Act as it is? Dr Shakespeare: As Professor Golombok has said in her evidence, in terms of the greater acceptance of a diversity of family forms, it seems to me that the Act is unduly restrictive in stipulating the particular traditional family as the preferred or sole basis for having IVF treatment. I have a problem with that. I think the evidence and public opinion have changed considerably. As I say, re-visiting the welfare of the child argument in the legislation would be advisable. Q1012 Dr Iddon: Are you saying that you think that the time has come now to take the IVF part of the Act out into normal medical practice and that we have sufficient evidence to support that, or do you believe regulation should be left in the Act? Dr Shakespeare: I did not say that. I do think that this is different to other areas of medical technology because it results in the creation of new people and we have to consider their interests. I do not think I would go as far as that. Q1013 Dr Iddon: Do you think there is evidence for the public wanting to tighten up on IVF regulation or are they happy? Dr Shakespeare: I do not think there is evidence of that. There is disagreement about particular decisions that the HFEA makes but I think, overall, there is quite a balanced response. I see no evidence that people are particularly concerned. I do not know how my colleagues feel. It seems to me that science moves fast. People are anxious about it. I reviewed, for example, the coverage of the recent award of a licence to Newcastle to do some work on nuclear transfer. The coverage and reactions were largely positive, I thought. Obviously people from the anti-abortion perspective are always anxious about embryo research. Setting that aside, it seems to me that public opinion, vox pops for example, is not good evidence, but the implication was that largely people were interested and supportive. Q1014 Dr Iddon: Does anybody believe that the policy making should be separated from the policing of the policy? There is a view that that should be the case. Do you agree or disagree with that? Dr Shakespeare: I do agree with that. It seems to me that the HFEA does two things. It is a regulatory body trying to ensure that patients get the best possible service, that the public can have confidence in the industry and so forth, but it is also dealing, as I said in my submission, with the thick questions of means and needs and what sort of families they should be and so forth. I think that is a slightly different process. There should be a lot more discussion, public involvement and public consultation. It should be in the public realm a lot more. If it is not two separate organisations, then it is two functions of the same organisation. Q1015 Dr Iddon: Do the other witnesses agree or disagree with that? Professor Richards: I would more or less agree with that view. The HFEA has, of course, undertaken some of these tasks of public consultation and so on, but there is clearly an interaction that goes on. It may be convenient to have one body doing both these things. Q1016 Dr Iddon: What role should the public play, first of all in drawing up the legislation and, secondly, in any policy decisions that may arise from that? Should the public be involved in any way? Dr Shakespeare: My view is that it is very important. I would come back to Dr Harris's strong line of argument earlier. The reason why we should take for example the views that we canvassed in our work on social sex selection seriously is because the public have got reasons and the reasons they gave to us were to do with sexism, the gift not commodity argument, motivations of parents who wanted to select, the fact that intervention in this area was morally serious, it should not be for trivial reasons, and so on. It was not just that they opposed it but that they gave good reasons. The people who were opposed to homosexuality in my view did not have good reasons. Q1017 Dr Harris: Because you disagree with them? Dr Shakespeare: No, they had no evidence of harm. They had aesthetic reasons and morale reasons based in traditional scriptures. People we canvassed on social sex selection had, I think, credible reasons. You would have to test those empirically. I think it is important to have deliberation, not just opinion polls but deliberation. There is a whole system you can use for this: citizens' juries, consultative conferences, a whole lot of things. That is so that the laws or the regulations that are made reflect common understandings and principles but also have legitimacy. I do feel that is the way things should go forward in a very contentious area. Q1018 Dr Iddon: Dr Shakespeare, we should re-introduce hanging, should we? Dr Shakespeare: No, because if you had a representative cross-section of the public and gave them all the evidence and talked through with them in a deliberative process, which might take a couple of days, I would be very surprised if you got a majority for hanging. If you stop people in the street, you get a majority for hanging. That is why you should have deliberation, not opinion polls. Q1019 Dr Turner: Professor Richards, in your evidence you express disappointment that discussions on the use of stem cells have focused exclusively on the status of the embryo. What do you think are the other important issues to be considered? Professor Richards: I was making a comment about my colleagues' focus but also of course the public debate very much focused on that issue. I think there is a variety of issues that arise which are dealing with something that may be a donation but a donation of a rather particular kind, given the genetic connection between the material being donated and the recipient. We simply just do not know enough. For example, with stem cells harvested from cord blood for the treatment of some genetic diseases, I would just like to see some social research examine that process, examine things to do with donor and recipient and family relationships involved to discover how the people themselves who are the recipients feel about this and whether they see any issues there. I am talking really about an area about which, from the point of view of systematic research, we remain largely ignorant. Q1020 Dr Turner: Do you think that when researchers apply to the HFEA they should be obliged to reveal the nature of their research, whether it is for therapeutic purposes or whether it is to deal with infertility? Professor Richards: I think there are differences. It seems to me that is something that should be open. Q1021 Dr Turner: Do you think there is a danger that people practising IVF who are also involved in stem cell research are going, consciously or unconsciously, to encourage patients to donate embryos for research rather than to treat infertility? Professor Richards: That is a situation that is hardly unique in medical practice; that is to say, there are other situations where those kinds of conflicts may be inherent in the situation. One hopes that professional judgment means that there are not the biases, but perhaps again this is an argument for having a transparent process so that it is known what is happening. Q1022 Dr Turner: Do you think that we should make this very clear in our regulatory framework? Professor Richards: There are different issues and on those grounds, yes, I think there should be clarity about the issues. Q1023 Dr Turner: Dr Parry, you seem to be of the opinion that the benefits of embryonic stem cell research have been somewhat over-sold. Could you tell us your view of this and what makes you think this? Dr Parry: My view is that there is a danger that the developments of embryonic stem cell research are being over-sold. You will be aware that the range of conditions which it is stated can be cured and treated by embryonic stem cell research is pretty phenomenal. This is very experimental and in the very early stages of the research. We are yet to find out whether this is going to be successful or not. I think at this stage the consensus amongst scientist that I have been speaking to is that it will help us to understand human biology and there seems to be an awareness amongst the scientific community too that there was an over-selling in order to overhaul the legislation to permit use of human embryos. This is not just my opinion. There are empirical findings. Q1024 Dr Turner: What do you feel about the impact of those feelings on donors? Dr Parry: To pick up on some of the things Martin Richards has been saying, for instance around coercion of embryo donors, people undergoing IVF, this coercion can occur not necessarily in a clinical context. It might not be that the embryologists in the IV clinic are forcing people into the situation but when it has been over-sold, people will feel morally obliged to donate their embryos. If it is being sold to these potential donors as "if you donate your embryos, you will cure people", to me this I not really addressing the range of possibilities. Q1025 Dr Turner: Given that the argument at the time of the last review of regulations into 2001 in Parliament the argument was that the embryos concerned were spare, embryos left unused from IVF treatment, not embryos created specifically for the purposes of stem cell research, your evidence rather suggests that in fact this distinction is slipping somewhat. Dr Parry: We need to be a bit clearer about what we mean by "spare". That involves speaking to those people who do donate embryos, or may donate embryos, and getting to grips with what they mean and understand by being spare. One of the problems raised in one of your earlier meetings with scientists is that what is needed are embryos that are not spare in the sense of being non-viable, that is embryos that are deemed to be of too poor quality to be used in IVF. High quality embryos are needed for stem cell research in order hopefully successfully to arrive at stem cell lines. To quote pressures, these are very valuable to those people undergoing IVF, especially if they have been unsuccessful. It is quite important at what stage you speak to people to ask them to donate and what constitutes spare. The views of a couple who are still trying to conceive may differ from to those who have been successful and are no longer enrolled in the programme. It is a case of asking which embryos, and when you ask as well. Q1026 Dr Turner: I expect several of you may want to comment on my final question, which is: what would be the social impact of reproductive cloning? Dr Parry: I have very little in terms of evidence. People have concerns about the impact on family life and what this means in terms of how it feels to be an individual. You have to consider a whole range of social contexts. Interestingly, in my research when people talked about reproductive cloning, the conclusion, after going through the range of pros and cons around reproductive cloning, tended to be: it is not that different to twinning really. It is a bit like what Martin Richards was saying earlier: society moved on from IVF, which was very contentious with Louise Brown, to being pretty acceptable - not wholly but pretty much. The people I have spoken to were able to think it through and came to the conclusion that maybe it would not be such a bad thing. Q1027 Dr Turner: You can see a time when human reproductive cloning might be seen by the public as being socially acceptable? Dr Parry: That is certainly what came through in my research, that people did not necessarily think it would always been seen as such a taboo. Q1028 Dr Turner: Dr Shakespeare, do you agree with that? Dr Shakespeare: I do not know. I suspect it might become more acceptable. It is clearly a bogey thing at the moment. It is something which everybody, scientists and the public, disown but about which the media become very excited. I would slightly disagree with people whom Dr Parry researched in the sense that being foreshadowed by somebody whose genotype to all intents and purposes is identical to yourself is problematic. We live in an open way. We do not know what our future might hold. A sociologist or a clinician could probably give you a pretty fair estimate of what your fate might be but you would like to think that actually it is far more "plastic" than that. If you have the same genetic characteristics as one of your parents, then you will see them developing in ways which, to a large extent, you will echo. That may be something problematic for anybody to live with. I also think, at least until social acceptability has changed, that you will always be seen as a rather curious individual and that that again might impact on the welfare of those children and adults. Professor Richards: I would simply comment that it seems to me a safe prediction in this country that the first use of nuclear transfer technology will be in the service of ridding a family of some perhaps mitochondrial disease or some such disorder and it will be in that context when presumably someone will begin arguing that there are other issues about that technology for social reasons. My major problem is that it seems to me very hard to think of very many situations where people would really want to do reproductive cloning. Q1029 Mr Key: Next week this committee is going to Italy to take evidence on this subject. You will be aware that the argument about IVF is raging in Italy. We will be meeting the Italian Bioethics Committee. What questions do you think we should ask them? Professor Richards: One interesting question might be how things in Italy have changed since their change in legislation and some of the consequences of their recent legislation. It does bear on the point you made earlier, which some of us have disagreed with, about the tightness of regulation in Britain and elsewhere. Italy, having gone from a country that has been described as the wild west of reproductive technology to one that has one of the tightest regulatory systems I think makes it extremely interesting. I am pleased to know that you are going to Italy. Q1030 Mr Key: Are there any other requests for questions to the Italian Parliament or Italian Bioethics Committee? We shall also be visiting the Vatican and meeting some distinguished gentlemen there to get the Vatican view on this. What questions would you like to put to the Vatican? Dr Shakespeare: I would ask them to give reasons about harm. I respect other people's faith positions but I am interested in how people live and what impacts on their lives, not on making policy in terms of a hard line revealed true. Q1031 Mr Key: May I return to sex selection? It seems to me, just as an ordinary representative, that most people would agree that if it comes to natural or cultural attitudes to male or female babies, we throw up our hands in horror at the prospect that anyone anywhere should seek to kill female babies in preference to males ones, or indeed any at all. When it comes to something like family balancing, although we heard the evidence is that most people in this country are still opposed to it, if you actually come down to the issue of saviour siblings - and that is an emotive phrase - people say, "Oh, yes, that sounds wonderful". What is going on here? Do we have much evidence to support any particular view about why the British public seem to be so muddled? Dr Shakespeare: I do not think it is muddled. I think the British public believes that if you are to intervene, you must do so for a good reason. Saviour siblings are a good reason. It is coined as "to create a life to save a life". Suspension of some of the restrictions around that seems possible, but intervening because you want a boy or a girl or because you want a balanced family does not seem to be, from the people we have spoken to, a good reason. They thought it was trivial and that is not how you should be selecting your babies. Professor Richards: I repeat a point I made in my written evidence. If you look at a whole series of different issues, there is a lot of reluctance on the part of many people to intervene in what is inherently an uncertain process of reproduction. We have children. We do not know whether we are going to have boys or girls. We do not know quite what they are going to look like; it will be some sort of mixture of characteristics in the family and other things. We can see again and again when people have suggested that we should do anything to try and control or intervene in that uncertainty that a lot of people feel unhappy. Over time, these attitudes may change if there are perceived benefits to doing that. There is a very striking difference in the kinds of interventions that people are prepared to do with born children-genetic surgery, sending them to school, all sort of things which are intended to change them and shape them - but birth does seem to be a very interesting line that people do not like crossing. You can see it in sex selection. We know that people who have two children of one sex are slightly more likely to go on to have further children than if they have one of each. The reasons for that I take to be that these are people who like to have one of each. We know from other work that is true for about half the population that they have a preference. It may not be a very strong one but in general they would like to have boys and girls in one family. They are prepared to use, as it were, natural means. It is the unnatural means that cause difficulty for most people. Q1032 Mr Key: Do you think then that if instead of these unnatural means of PGD and stem sorting, you simply went along to your doctor and the parent said, "Please can I have a pink pill or a blue pill" that would be socially acceptable because it was not complicated? Professor Richards: It is not a matter of complication. It is something rather more subtle that is going on here. In the States, for example, you can use birth sorting. What is interesting to me is that the date was 1998 when it was first offered and there have been 2,000 cases. America is a big place and presumably a lot of people have strong feelings about having boys and girls but most of them do not make use of that technology. Dr Shakespeare: There is obviously also this question. When any sex selection technology fails, when people have put their hope in a boy and gone to all this expense and effort to get a boy and it is a girl, then you can imagine that the psycho-social impact of that would be negative. Q1033 Mr Key: Do you think the HFEA has got it about right on social sex selection? Dr Shakespeare: I think they got it wrong because they did not give reasons. They just said, and Dr Harris picked me up on this earlier, people will not like it and so we should not do, whereas they should have said: people do not like it, they have coherent reasons, and we are not going to do it for now. Q1034 Mr Key: The ladies are very quiet on the last points. Professor Golombok: I have been quiet because sex selection is something in which I have not really been involved. One reason why some people are against sex selection is that it is assumed that this would happen if they were all boys. The evidence that is available suggests that is not necessarily the case. Maybe it would be used in terms of family balancing. Again, it is an area where there are a lot of assumptions about what might happen that may not turn out to be the case in fact. Professor Richards: If I can be specific, that is exactly the evidence in the States from the company operating it. There have been more couples going on for girls than boys. Dr Shakespeare: Our respondents say that you should take what comes: children are a gift, not a commodity. That is a difficult thing to map out in theoretical terms but it is a very strong intuition. The worry is that the people who want to have a child of a particular sex have a particular package of expectations about a child of a particular sex. If it is so important to you that you are going to take these steps to have a boy, you are not going to be very happy if they turn out to be a nurse or have some other sensitive and stereotypically non-male type professional behaviour. The fear is that the idea of wanting is connected with a stereotypically and narrow view of what boys and girls are and we should be promoting openness for our children, so that they can make up their own minds. Nobody can complain about being a boy or a girl but they can complain about being expected to be a certain type of boy or girl, Mr Key: Tell me about it, Dr Shakespeare. My father-in-law was one of five boys. He produced five girls. My wife and I have two of each! Q1035 Dr Harris: We had better not delve into the family history of each of us. That would require an inquiry of its own. I want to explore some of your evidence, Dr Shakespeare, which was fascinating. In some of our evidence sessions, we have had discussions around a Harris-Campbell disagreement - John Harris and Alistair Campbell - about what you recognise as a philosophical challenge, given that it is in any child's interests to be born unless life would be so awful that it would be better not to exist at all. Which side of this argument are you on in that it is a philosophical opinion that bears on one's approach to these things? What is your view on it? Dr Shakespeare: It is a philosophical conundrum. I am not a philosopher so I would be reluctant to express a philosophical view. It seems to me that we can bypass it. Many of us are saying, "Look, we have a problem because the person you say is harmed has only been created because of the technology that you oppose". Take surrogacy: without the need for the surrogacy, there would not be the child, and therefore the child has no grievance against the people who created it in this way and similarly for the child born by anonymous gamete donation. My philosopher friends, like John, say, "Tough! They think they have a problem, well, tough. If it had not been for that, they would not be here". One of the philosophers even suggested to me that if you explain to these folks their logical error, they would feel better and say, "Of course, how silly of me! Of course I have not any reasonable grievance". I do not think people work like that. I think there is an intuitive sense in which we can say that a surrogacy or whatever is either right or wrong in terms of its impacts on the child. I have tried to get around it in a practical way by saying that a world in which such and such a sort of thing happens is better than a world in which other things happen and that is how you should be legislating. Q1036 Dr Harris: So, for example, a world in which there is no disability is better, most people would say, than a world in which there is significant disability but we should not allow that to influence policy decisions. You are comfortable with that as well? Dr Shakespeare: Yes. I think we should reduce disability, definitely. Q1037 Dr Harris: So we should do a number of things, or at least allow the view that we should try and reduce the amount of disability in the world; we should allow that view to permeate a lot of policy decisions? Dr Shakespeare: I think there is a real problem here because the expressivist argument suggests that if you seek to reduce the impact of disability in certain ways, then that is hugely negative for the people who are living with disability. There always will be disabled people. If you push a strong message that disability is the worst possible thing in the world that is going to go against your other governmental policies of social inclusion and better quality of life for disabled people. So you have to be very careful about how you do it. Q1038 Dr Harris: Do you agree with that? Do you agree that if we work really hard to avoid through genetic treatments, let us say, in theory there being born people with significant disabilities, that that automatically means, or there is a strong likelihood, that society cannot at the same time do more to help people who are already disabled? Dr Shakespeare: I did not say that. I think it is the way you do it. Just to take a very crude example, if every antenatal screening clinic had a big poster saying "Disability is the worst thing in the world. Get tested. Terminate any affected pregnancy" I think that would be really bad. We keep going on about car accidents after drinking and driving. There was an anti-drinking and driving advertising campaign a few years ago which showed the picture of a very severely impaired guy and it said, "Don't drink and drive, you will end up like a vegetable". I can understand why they did it but it is absolutely wrong because you are promoting a certain policy while denigrating a particular group. I think that is negative. I do think there is an intuition that could reduce the impact of disability. I agree with that. Most of my disability radical friends do not and they think I am wrong, so there is a very strong feeling in the disability movement that you should not prevent disability. I think that is wrong. I accept that, for example, folic acid should be taken in pregnancy. I accept that we should, in all sorts of ways, try to reduce the impact of disability. I think there is a moral difference between reducing the impact of disability and preventing the birth of disabled people, and that is where lots of disabled people are very anxious and worried. Q1039 Dr Harris: I am glad you have got that on the record. You argue in your evidence that PGD should be limited to the life-threatening or life-shortening conditions and not to what you would call minor or trivial conditions. How should that distinction be made and who should make it? That is probably the same question. Dr Shakespeare: I think that is a hugely difficult question. I am going to have to say it should be left to clinical judgment. There is anxiety about how far PGD goes. There is anxiety, for example, about late abortion for cleft palate. Q1040 Dr Harris: You say it should be left to clinical judgment. What do you envisage by that because there will be abortion? You will always find a doctor, particularly when they are being paid to do it, who will take a view that fits in with your requirement in the market for the service. Dr Shakespeare: I am afraid we are going to have to live with that. I think it would be very difficult to enshrine in legislation, or indeed in a code of practice, that these sorts of conditions are worth avoiding and these are not. It depends on the family; it depends on the parents; it depends on their social situation, their cultural and moral position. It would send a very negative message to the thousands of people who are living with many of those conditions. I support the right of a couple to have PGD to avoid achondroplasia or things like that. Q1041 Dr Harris: That is restricted growth? Dr Shakespeare: That is my condition. But I would be anxious about a law which said, "Tick that box". Q1042 Dr Harris: So you would not even have a definitely allowed but not compulsory, a definitely not allowed blondness or something, and anything that is not on that list left to clinical judgment? The HGC could perhaps maintain this list and make it available Dr Shakespeare: I think I would accept that but I would like to see a lot more consultation on that. I do not think that has ever been put or proposed. If it were to be your recommendation, I would be very interested to see what the disability community in general and the public thought about that. Q1043 Dr Harris: We get on to the abortion issues. I expect our inquiry will touch on some of these, though not probably full on. You suggest in your evidence that the law should prohibit feticide up to 24 weeks. What about the situation where the pregnant woman chooses abortion because she fears for the welfare of the child if born? Say she already has a number of children with a certain disability and feels she could not cope? Do you feel there is over‑protection of the embryo in that scenario? Dr Shakespeare: I think women should be able to have terminations up to 24 weeks. There is a major problem. I know there are about 100 abortions a year after 24 weeks in the UK. The symbolic impact of a law which says that, as it were, you get human rights at 24 weeks unless you are disabled, in which case you do not get human rights until you are born and questionably after that, sends out a hugely damaging message to disabled people and to the wide community about the value of babies. I think we should do everything in our power to ensure that genetic diagnosis has progressed sufficiently and that people are given information prior to 24 weeks that termination is available prior to 24 weeks, so that we do not get those cases. The only case where I feel that termination after 24 weeks should be allowed is where there is a likelihood that the mother is in danger. Q1044 Dr Harris: My final questions are around savour siblings and the reasons issue. We were told that the reason that the Whittaker case was first rejected by the HFEA was because there was not enough evidence of the safety of PGD for the child that did not yet exist. In my view, they rejected the fact that it was practically life and death for the other child which ought to be considered. The Whittakers made the same point that you make that they were never told nor consulted. Did you support that decision the first time round? Dr Shakespeare: No. There are tiny problems of imprinting problems in PGD and we should monitor that but that is infinitesimally small. I am not a clinician or a scientist. From the scientists I have spoken to, I do not think there is any good clinical evidence that PGD harms babies created through it and therefore I do not think they should have rejected it on that ground. I am worried about the treatment of the savour sibling. If cord blood donation does not work, the next step would be presumably bone marrow transfer, and I am very worried about what we might then feel we should do with babies who are in a position to help. I do not know how to deal with that. Can you consent a baby to treatment which will benefit a third party but put them at risk? Q1045 Dr Harris: It is invasive? Dr Shakespeare: It is invasive, it is painful, and there is a risk. It is not a huge risk but there is a risk. I worry about that. I think that the drift as to where we are going makes the pressure on the parents and on the doctors strong to use the baby in that way, and I am deeply concerned about that. Cord blood does not harm the baby at all but other uses might do. Norway is puzzling over this at the moment and they say you cannot do bone marrow transplant; you can only use the cord blood. Dr Turner: At this very interesting juncture, we will have to stop because the time has beaten us, as ever. I hope you will not mind if we write to you with a couple of residual questions that we have not had time for. Thank you all very much for your very valuable contribution towards our inquiry. It has been a pleasure to have you as witnesses. |