§ 8.13 p.m.
§ Baroness Andrews
rose to move, That the draft regulations laid before the House on 4 May be approved [18th Report from the Joint Committee and 8th Report from the Merits Committee].
§ The noble Baroness said: My Lords, we believe these regulations recognise changing times and changing expectations. They also deal with issues that are by definition sensitive and controversial and to which the Government have sought, after long and hard reflection, to do justice.
§ In 1990 this House agreed the current provisions for the information which the Human Fertilisation and Embryology Authority can give to donor-conceived adults. The provisions were right for their time. The 1990 Act enabled the HFEA to construct a register and provide the following limited information, if asked by a donor-conceived adult: whether the person might be related to someone they intend to marry; and, at age 18 or over, whether the HFEA's register showed them to be donor conceived.
§ Those were entirely sensible provisions in their day. But over the past 13 years it has become apparent that in adulthood some donor-conceived people find those provisions inadequate and insufficient. Some have said, for example, very poignantly that not being able to find out about their origins has left them with a gap in the way they see themselves, a gap in their identity, in their ability to tell their own story—and we are, after all, story-telling animals—and an inability to make complete sense of their lives.
§ By 2010, about 40,000 donor-conceived children will have been born—and by 2023, about 60,000 such children. This is an issue for the House today because in agreeing the provisions in 1990, Parliament anticipated the possibility that, as time passed, more information might be sought and might need to be given. The Act had a regulation-making power in Section 31 to enable us to do this, and for the past three years we have been considering and consulting how best to do so. We feel it is now time to end the uncertainty, to make good that anticipation and, in particular, to reflect the paramount rights of the child in these provisions as we are seeking to do consistently in many other aspects of law and practice.
§ There are two aspects to the regulations—nonidentifying and identifying. Under the regulations before us today, a donor-conceived person aged 18 or older will be able to obtain a list of non-identifying information about their donor from the HFEA if they ask for that information and if that information is on the HFEA's register—which began in 1991. Given the lapse of time, the first 18 year-olds will be eligible to ask for this information in 2010. By that time, the information on the register might be slightly limiting, depending on what the donor was asked to provide at the time of donation. In respect of donors who register with a clinic on or after 1 July of this year, a comprehensive set of non-identifying information will be collected from fertility 345 clinics by the HFEA. This is listed at Regulation 2(2)(a) to (h), and for example includes physical features, ethnic group, religion, occupational interest, and a pen portrait of the donor.
§ The second element in the regulations enables donor-conceived people born from gametes or embryos donated on or after 1 April 2005 to obtain identifying information about their donor from the HFEA when they reach age 18 or later. That is set out in paragraph 3, and includes the name, date of birth and last known postal address. We fully recognise that this is a highly sensitive issue. There is an ethical as well as a practical need to balance the rights of the child with the rights of the donors who make such an invaluable gift of life. We have concluded after an extensive public exercise and consultation that it is right that in the future donor-assisted young people should have these new rights. We have every expectation that they will grow up in loving and happy families. However, just as some other countries have concluded, we also feel that they should have the right to access information about their origins which will help them, if they so choose, to complete their life history.
§ Among the bodies which support the decision are the Ethical Committee of the BMA and many children's organisations. This means that the first 18 year-olds to benefit from that information will do so from late 2023. Let me emphasise that the commitment to past donors has been that they will not be identified retrospectively. We respect and will uphold that commitment.
§ What has changed since 1990 to make this provision seem so necessary? One thing is that there are some 25,000 donor-conceived children—2,000 are born a year—and we welcome that. Another important cultural change—partly because of the 1990 Act—is that the secrecy and even stigma surrounding assisted conception has faded. Many more people talk much more openly about assisted conception, including donor conception. We celebrate that, and recognise and share the distress that infertility causes. Assisted conception and infertility is no longer so much of a matter to keep hidden, though of course it remains a painful matter, very deeply felt. I also believe that public attitudes towards information and rights to information have changed dramatically. Information now is much more readily accessible than it was in 1991. Information about donors is held on a national database, the register of the HFEA. It is largely collected and stored by the HFEA, but donor-conceived people have no access to it. In a century where access to information is regarded as a personal and political right, this does not seem any longer to be appropriate. It has already proved to be a bone of contention—the Government are very likely to be challenged about the provision of information to donor-conceived people, as the Department of Health has already been in an application brought by Liberty. That application related to the provision of non-identifying information.346
§ I say again, we have not taken this step without long and serious public consideration. We held a consultation exercise on non-identifying information between December 2001 and July 2002. That process revealed that there needed to be a wider debate on identifying information. These regulations reflect the outcome of this whole process. The responses to the public consultation showed that there was significant support for the non-identifying regulations. There is also considerable, but not universal, support for a move to identifiable donors.
§ Let me focus on identifying information since that is what I know noble Lords will want to address. Of the 237 responses received to the public consultation in 2002, 132 were in favour of removing donor anonymity; 70 were against; and 23 were undecided. However, we found that there were relatively few responses from clinics or donors. So, we carried out further work to assess the response of clinics. Forty-five clinics and 140 donors replied. Most, not all, of the clinics did not favour removing donor anonymity. I will come to the reasons for that in a while. However, a third of them made positive suggestions for recruiting identifiable donors in the future—more advertising, with a higher profile, and more and better information. One or two clinics were extremely positive.
§ In the light of that, I shall address some of the dilemmas that, I am sure, noble Lords will want to raise. First, will the change to identifying donors lead to a loss of donors, longer waiting lists and more pain for potential families? We recognise the importance of donor sperm or eggs for 7,000 or 8,000 patients each year. We know that clinics will need to recruit at least 200 identifiable sperm donors each year, perhaps double that. They will also have to recruit 1.100 identifiable egg donors. Of the 140 donors who responded, half said that they would be willing to donate again as identifiable donors, if they were able to. We know, of course, that many of them will not be able to, for a range of reasons, but it is a significant and encouraging response, as they were recruited on the firm understanding that they would be anonymous.
§ Secondly, although we recognise that there is likely to be a dip in donor numbers—certainly in the short term—evidence from other countries suggests that donor levels will rise again. After Sweden removed donor anonymity in 1985, there was a decline, but research indicates that the decline was later reversed. In Victoria, Australia, identifying information for all donors was required from 1998. A decline was reported, but now donor recruitment is at a level that meets the need. In New Zealand, there has been a voluntary system for identifying donors for some time, and new legislation has recently been introduced to remove anonymity. We are told that the consensus is that the legislation is highly likely to succeed.
§ The third reason why we believe that the recruitment of identifiable donors is achievable is that we are doing things differently. We are not aware of any other country that has removed donor anonymity alongside a campaign to raise public awareness and improve the 347 service. That step forward will put the recruitment and support of donors on a more systematic and reliable basis, which the clinics have wanted.
§ Since 1990, the National Gamete Donation Trust has become a central point of contact for people wanting information about becoming a donor, and we have funded it for several years. Additional funding has recently been made available for the appointment of a donor recruitment manager. That is a big step forward. She will work with clinics, with the HFEA and with organisations representing patients to improve services for donors and encourage recruitment. The manager is now in post, and we shall make further funding available.
§ We will accompany the transition to donor identifiability with a positive, proactive campaign for public awareness of the value of donation, so that we can help clinics to recruit identifiable donors. We are working closely with the British Fertility Society and the National Gamete Donation Trust. We are already discussing ways of using the media to reach potential new donors. Ultimately, we want to see a change in the culture around donation. We want a better service, which not only emphasises the value of the gift made but encourages a different profile of donors and provides additional support and status for donors and donor families. I am reminded of the great book by Richard Titmuss, published some time ago, on the gift relationship. He was talking about blood donation, but this is a gift relationship of a different sort, and we should value it.
§ We are taking steps to support clinics and their work. We realise that clinics cannot change from using anonymous donors to identifiable donors overnight. We have given advance notice to clinics of a transitional period from 1 April 2005 to 31 March 2006, in which clinics will be able to use sperm or eggs donated anonymously before 1 April 2005. From 1 April 2006, when the transitional period will have ended, donations will have to be used on an identifiable basis. There will be exceptions for gametes reserved for the creation of siblings for children already born, which will not be destroyed until the end of their storage period, and embryos created before 1 April 2006 from sperm or eggs donated anonymously before 1 April 2005.
§ One of the fears that has been raised is that parents might be deterred from telling their children that they are donor-conceived, but I understand that research soon to be published by Susan Golombok, Director of the Family and Child Research Centre at City University, indicates that more parents are planning to tell their child about donor conception—about 50 per cent intend to do so. The research points out that if parents act on this intention, obviously it is likely that some children, when adults, will want to have information about their donor. Some may wish to have direct contact.
§ The fear is that such willingness to be open will be compromised if families are afraid of a much-loved child breaking away to initiate a new and possibly destructive relationship, leading to distress and trauma to the original family. The evidence from 348 Susan Golombok's research is that there is greater emotional involvement between both parents and the child conceived by gamete donation than other children. It is a well researched piece of work and, I believe, extremely significant. That evidence seems to militate against such a general possibility.
§ At another level, I do not believe, at a time when there seems to be more openness towards relationships, that that trend will be reversed. We are living through a cultural change. We have seen such openness work successfully in recent years in relation to adoption. Research in Sweden, where donor anonymity was removed in 1985, showed that more parents told their children about their origins in the period 1992–97 than in the period 1986–92, and that about 50 per cent have told, or intend to do so.
§ A third source of reassurance comes from the fact that families will not be left to fend for themselves as they consider telling their child. There is a great deal more support available for families to assist them through the process, and there will be more in the future from organisations such as the Donor Conception Network who will put families in touch with each other and, I am sure, will be able to develop the services and support they offer, in terms of information, workshops and so on, in response to the challenge that will be placed upon them.
§ The fear that parents may be deterred from telling is related to another: whether donors will be deterred by what has been rather dramatically described as the threat of a knock on their door in 18 years' time. We are giving careful thought to what counselling services might be accessible to donors if a donor-conceived adult expressed an interest in contact. We would expect arrangements for being in contact to adopt the same values and principles as those we are developing through the adoption changes. Those changes were much more radical because they were retrospective, which the contact arrangements are not. There are many details to be worked out for the process to be put in place in 18 years' time. We have time to get it right, and I can pass on an invitation from my right honourable friend the Minister in another place to noble Lords to give their responses, experience and advice on these issues.
§ There are two points I want to make clear. First, donor-assisted children who want to seek out the donor will not be able to make any claims on them. The donor will have no legal, social or financial responsibilities. The second is a more intuitive comment. These children are, by definition, much-loved and much-wanted, and in those circumstances it is unlikely that they would seek wilfully to disrupt the donor's family life. There is some positive evidence: several donor-conceived children in the UK and abroad have traced genetic links through DNA testing. They have not acted, or been met, with hostility. In fact, I understand that much happiness has resulted. Over the past 12 to 15 years in New Zealand, donors have been accepted only if they were prepared to be identified to offspring in the future. In recent years the Sperm Bank of California has 349 provided the identity of its first donors to donate under its identity release scheme. We are not aware of any negative consequences that have followed from that.
§ We will take stringent steps in the regulations to ensure that donors and donor-assisted people have the fullest possible information and support in whatever decision they take. A donor-conceived adult wishing to ask for information from the HFEA might, for example, be given an initial leaflet for consideration or be offered appropriate counselling. Another possibility is that they might be offered non-identifying information first, before taking the decision to ask for identifying information. They do not have to ask for all the information, but it would be accessible to them.
§ As I have said, donors will be offered extensive counselling before signing up with a clinic to being identifiable. If a donor decides to proceed, his or her information will be passed to the HFEA for storing on its register.
§ I believe that these regulations are timely. Given that the issues are so difficult, they are appropriate, right and consistent with other aspects of the policy for children. With a strong effort by fertility clinics, sperm banks and support organisations, and with a campaign for public awareness, a better service and a more positive, open culture, I believe that we can steadily attract donors to meet patients' needs and protect the rights of children growing up in a future world where questions of identity are likely to be even more urgent than they are today. I commend the regulations to the House.
§ Moved, That the draft regulations laid before the House on 4 May be approved [18th Report from the Joint Committee and 8th Report from the Merits Committee].—(Baroness Andrews.)
§ 8.30 p.m.
§ Earl Howe
My Lords, I thank the noble Baroness for introducing the regulations with her customary clarity and for the sensitivity with which she has addressed what are by common consent quite complicated ethical issues.
What gives rise to these regulations, however, is not at all complicated but very simple: it is the general principle that openness and access to information is a desirable thing. I think it is certainly true—and here I agree with the noble Baroness—that the climate of the times in which we live favours greater access to information, all other things being equal, than was the case 14 years ago when the HFE Act was passed by Parliament.
In tune with that thought, I am entirely sympathetic to the idea that no person who has been adopted should be denied access to his or her genetic identity or the information that goes with it where such information is readily available. It is a perfectly natural human impulse to want to find out about one's origins where for any reason these have been concealed. As a result, I have no difficulty with the proposition that donor-conceived individuals should 350 have access to non-identifying information about the person who donated the sperm or egg which brought them into being. Indeed, I have not heard anyone raise an objection to this idea.
It will probably be quite surprising to many people that there is no provision for this to happen already when the first donor-conceived individuals on the HFEA register reach the age of 18 in 2010. I, myself, did not previously realise, for example, that but for this order there would have been no provision for anyone to be given details of a donor's medical history or that of his family. That was a surprise to me. Indeed, there could be circumstances in which such information was relevant and important to a child before he or she reached the age of 18, and I am not at all clear why, if the need arose, these details should not be made available to him or his parents at any time. Perhaps the Minister could comment on that point.
The more difficult aspect of the order relates, of course, to identifying information. The main fear expressed about this, to which the noble Baroness referred, is that it will lead to a serious fall in the number of donors. The work that has been done by the Department of Health indicates that half of all donors—that is to say, existing anonymous donors—would have been willing to donate sperm or eggs if their anonymity were removed. That, so far as it goes, is mildly encouraging in that it indicates that there are at least some people who do not mind the idea of being identified even though they have volunteered anonymously. However, I would not have thought that it was enough to enable us to be confident about the supply of donations into the future.
This is a very important issue. About 2,000 couples a year depend on donors in order to conceive. I am aware of how deeply distressing it is for such couples not to be able to have children. If we are to continue to address their needs—as I believe we should try to do—we have a duty to make sure that we do not do anything which would seriously jeopardise the supply of donors.
The Minister mentioned that the Government intend to mount a campaign to boost the numbers of identifiable donors. It would have been more reassuring if they had carried out some proper market research on that score. I am not aware that they have carried out any beyond the straw poll that I mentioned, which cannot really be said to constitute research.
There is still a great deal that we do not know. At present, the recommended maximum number of live births per sperm donor is 10. We may find that identifiable donors are not willing to allow their sperm to be used for as many as 10 live births. Bearing in mind that the regulations will potentially allow all their adult genetic offspring to make contact at the age of 18, there could well be a limit to the number of people that they want to find knocking at their front door, as the Minister put it, in 18 years' time or later. That would be a perfectly understandable stance to take.
351 The trouble is that we have no idea whether, first, we can recruit the same number of donors that we have previously, or secondly, there is likely to be on average a smaller number of live births emanating from each of them. If, for the sake of argument, the average number of live births per donor fell from 10 to five, the recruitment of donors would need to double from present numbers. How achievable is that? I suspect that that was the reason why so many licensed clinics opposed the removal of anonymity.
Efforts will also need to be made to recruit more egg donors. A high number of eggs donated—although not more than a third of the total—come from what are termed egg-sharing arrangements; that is to say, where women in receipt of fertility treatment allow some of their eggs to be used to benefit infertile couples. We simply do not know how many women will be prepared to egg-share on an identifiable basis.
One consideration that may deter women from sharing eggs is that their entire medical history, including the fact that they were in receipt of IVF treatment, could become known to others at some future date. For many women, receiving IVF treatment is still a private and sensitive matter. Many may balk at donating eggs for that reason. If they do, their feelings should be respected.
The trouble is that if there is a shortage of egg donors, as there may be, some women will find themselves pressurised into agreeing to egg-sharing arrangements and may even do so contrary to their better judgment. I am concerned about whether that would be ethical and I hope that the Minister will tell me that it will be strongly discouraged in GMC guidance.
If there turns out to be a shortage of either sperm or egg donors, infertile couples will either have to wait longer or else they will go to where they do not have to wait. We could find some couples going abroad to purchase donor-assisted conception; perhaps to countries with less stringent regulation than we have here. I await to hear from the noble Lord, Lord Turnberg, if he is planning to speak—which I hope he is—whether he thinks that that is a possibility. If it is, we should be concerned.
We need to ask ourselves whether the gain to be derived from discarding anonymity is worth the pain that may ensue. I say "discarding anonymity", but of course it is not clear how many donor-conceived individuals will be in a position to exercise their right to discover the identity of their genetic parent. The exercise of that right presupposes that such individuals will be informed that they are donor-conceived.
The Minister spoke of recent research, which was extremely interesting, but a recent study showed that a high proportion of children conceived by donor are never at any stage told that that is how they came into being. We have no idea whether the regulations will have the effect of increasing secrecy or whether they 352 will make no difference. They may possibly do the former if parents are resistant to the idea that one day the child may seek out his or her genetic parent. It would have been useful to have some credible market research on that issue, alongside the other questions that I have raised, but we do not have any. We have only what one might call expressions of blind optimism, if that does sound too unkind. I do not think that that is an adequate basis on which to pass laws, especially laws of this nature.
The Minister spoke about the rights of the child being paramount. It is worth making the point that a child has no absolute right to be told about his origins. He cannot have, otherwise the regulations would have contained a provision to ensure that every relevant child was given this information at the appropriate time. So we are not talking of rectifying the absence of a right that is unconditional but about something that is desirable. Given that, I have to question whether it is wise to allow access to identifying information at this stage. Would it not have been much better to do so only when we were a little more certain what the consequences were likely to be? That would have been the responsible course. However, the Government have closed off that option, and I think that that is a mistake.
§ Lord Clement-Jones
My Lords, I, too, thank the Minister for a very thoughtful and persuasive introduction to the debate. If we were to vote on the regulations, it would be a free vote on these Benches. In a sense, I speak as an individual rather than on behalf of my colleagues, although I hope that I represent the views of a considerable number of them.
There is no doubt that we are debating an issue of considerable importance. Lifting anonymity for sperm, egg and embryo donors after 1 April next year is not something to be undertaken lightly. There was a very interesting debate in the other place. The noble Earl, Lord Howe, set the case against the Government's proposal and emphasised that a very serious debate needs to take place.
Effectively, we are setting considerations of the rights of the donor-conceived child, or certain principles relating to those rights, against concerns about the future supply of sperm and eggs for couples who wish to undergo fertility treatment. The bottom line is that I believe that, following the Government's consultation, the case has been made for lifting anonymity. As the noble Earl, Lord Howe, said, there is nothing between anyone, on any side of the House, on the non-identifying information. This debate is all about the identifying information.
Knowing who one's biological parents are is part of one's identity, and it is important to have that information, if it is available. I do not think it is relevant only on medical grounds so it is not adequate to have only the non-identifying information available.
A sense of identity is extremely important in these circumstances. To some degree, we can debate these matters rationally and scientifically. Having read a 353 great deal about the subject over the past few days, I feel that a sense of identity is at its core. It is difficult to explain precisely why that should be, but that is where I feel a lot of the argument lies. It is not necessarily a scientific thing to know where you came from, it is partly emotional. It has been said that roots are overstated but I believe that they are very important. There is a sense of loss and frustration when those are not known. It has been recognised, as the noble Earl, said, for adoption purposes. We made great strides with the recent adoption legislation, and I believe that the information should be available for those who are conceived as a result of the donation of eggs and sperm.
I was very much taken with a recent article on the Donor Conception Network website; the noble Baroness referred to the organisation. It adds up to the fact that people need to consider and recognise the long-term implications of their decision on donation. The Minister spoke about a gift relationship. It is of course a gift relationship, but it is a responsible one. That is the cultural issue at stake.
I was much taken by Walter Merricks's article, blandly entitled "Ethical Issues—Anonymity". He asked whether donors who cannot cope with the consequences should be donating. If potential donors do not want to accept the long-term consequences of their donation, is that because they are currently encouraged to think that their act is a simple, uncomplicated and unconnected one, with no consequences and so on? Of course not. We should be encouraging responsible donation. Ultimately, there should be no great conflict in that area. It is fair to remove anonymity, provided that it is not done retrospectively.
The noble Earl, Lord Howe, made a valid point about market research and the impact of similar changes in other countries. We need to know about that. Did the level of donation in Sweden return to former levels shortly after 1985? I do not know the answer to that question—I am sure that the Department of Health's research resources are far greater than mine in terms of the comparisons it can make—but I hope that that was the case.
The real effect for donor-conceived children will not be seen until 2023, but the effect on couples who may be faced with inability to undergo treatment could be seen much earlier. That needs to be set against the fact that we are speaking about some 220 sperm donors in any single year. Therefore, one of the big questions to ask is what would be the impact of the kind of promotional campaign about which the Minister has spoken. Surely it cannot be beyond the wit of the Department of Health or others involved to increase the number of donors beyond 220 in any one year.
There are other valid questions to which we do not know the answer. The noble Earl, Lord Howe, raised the issue of the recommended number of live births from each donor, which is currently set at 10. What will be the impact on that figure when the donations are no longer anonymous? How can we look into the 354 crystal ball on that? I suggest that we have to do our very best in promoting discussion and a change in culture in the way that the Minister described.
Of course I understand the reservations of the British Fertility Society and of several clinicians, not least of the noble Lord, Lord Winston, who is not here today. He has gone on record as being against the regulations. Those reservations need to be carefully weighed up, but if the Government are prepared to weigh in with a major campaign to persuade donors to come forward, that would go a long way towards satisfying the pragmatic objections.
We need a change in the nature of the culture of donation and indeed of parents. I have great respect for the researcher, Susan Golombok, in other contexts. I have not seen the research to which the Minister referred, but I hope that any campaign addresses not just the issue of donors and their willingness to donate, but also that of parents sharing that crucial information with their children at some future date.
There are a number of other questions to be asked. For example, what would be the budget for such a campaign? We have heard about the principle of the campaign, but what the advertising people call "share a voice" is hugely affected not only by the messages of the campaign, but also by the amount of money spent on it. It does need to be a powerful campaign.
Although the Minister was setting aside the counselling problem slightly for the future, we need reassurance on how that service would work and would be set up.
The transition to the new regime will be extremely important. It is also very important that if we make this change in the regulations today, we say that it operates from a certain date. There should be no resiling from the current anonymity of those who have donated on the understanding that it was going to be on an anonymous basis. That is very important as there is a great danger that once one set of rights is given, that situation could change in the future.
Having weighed up very closely—it is an extremely difficult area of ethics—whether the issue regarding future donors is outweighed by the principle that donor offspring should, where they choose, have knowledge of their genetic origins, I come firmly down in favour of the latter.
§ Baroness Warnock
My Lords, I greatly welcome the regulations. One of the declared aims of government is to provide equity between children who have been born by donor and those who have been adopted. As has been said, this has become increasingly important now that society as a whole is much more conscious of the importance to an individual of being able to see himself in a wide genealogical and genetic context than was the case 20 years ago. Then, the overriding consideration against supplying identifying information was the fear that the supply of donors would dwindle.
355 However, I believe that in any case, even if the supply dwindles temporarily, we need, as the Minister said, a culture change in our attitude to donation. This can be brought about by changing the view taken of infertility, male and female, and of the motives of those who donate, particularly perhaps those who donate sperm.
There is no doubt that in the past there was something surreptitious and slightly comic about sperm donors who tended to be medical students who needed money for a pint or something. There was something faintly funny about going off and masturbating and producing sperm and no one really liked to acknowledge that that was done.
However, as has been said, I think that a new kind of donor may well arise who quite definitely makes a donation altruistically. I say anecdotally that I have met three or four men in their forties with children of their own who have decided quite deliberately to become donors because they are filled with sorrow at the thought of what people suffer who really want children and who are infertile.
It seems to me that one should not be too horrified by the thought that five or even 10 people might turn up on the doorstep. Of course, they will not. If they want to find out who their father is in the case of artificial insemination by donor, they will take pains to find that out, and they may or may not want to make contact with that person. However, even if they do, it seems to me that often making contact with your genetic parents when you are an adopted child is far more controversial, and often far more difficult, than making contact with a donor, whether of eggs or sperm, because, after all, the child who is adopted had already been born, and was already given away by the genetic parents. The parents may well have other children and may want to forget all about the child. They may even have concealed its existence from everyone. There may be many cases where an adopted child making contact with his or her genetic parents is very traumatic and does not turn out well at all, whereas I think there is something much less traumatic about the very fact that you are a child of donation—you had not been born when you were, as it were, given away. You never were given away.
The most important thing is in general to overcome the aura of secrecy, which ought by now to have gone away entirely. If, as I believe, providing information about the genetic parent makes it less easy for parents to conceal from their child the circumstances of their birth, that must be nothing but good. If the child has a right to know, the parent who refuses to tell the child that he was born by a donation is really committing an offence. Therefore, the child ought to be accorded the right to know, just as adopted children are.
Secrecy about adoption has almost died—hardly any adopted children do not know that they are adopted—whereas there still are a very large number 356 of families who try to conceal from their children that they were born by donation. As the noble Earl, Lord Howe, said, that is partly to do with the still-remaining shame about infertility. Surely we have got over that since 1991. The Act did a great deal to bring the issues into the common domain. I am not sure that so very many people are ashamed to have received IVF; many of them, such as the original IVF people, are intensely proud that they did so. The same is true of male infertility, which is far more acceptable as a concept than it was 20 years ago when it was confused with impotence and people thought it shameful.
There can be no moral justification whatever in deceiving a child about the circumstances of his birth. It is a very awkward doctrine to enunciate, considering the number of children born by adulterous relationships. Nevertheless, it is deeply morally wrong to pretend that a child is the son or daughter of a father or mother who is not his or her real biological parent. To insist on pretending shows self-interest on the part of the parents—that they are interested in their own status, not that of the child. It may be deeply traumatic for the child, because children nearly always guess that there is something a bit funny about their birth if it has taken place by donation or they were adopted. To treat a child as though it were a toy or a pet—to suggest that it does not particularly matter where it came from because it is your child—is genuinely immoral.
The whole opening-up of the issue will encourage parents to realise that they must not conceal from their children the true facts of their origin. We all know that there may turn out to be medical factors that make it quite essential that they know. For instance, if the social father develops Huntington's Chorea, the child must be told that he is at no risk. Quite apart from those considerations, not to tell the child is simply to use it as a means to the parent's satisfaction—to refuse to allow him to see himself as the individual whom he is. On the grounds that that will be less easy in the new open atmosphere, I greatly welcome the regulations.
§ 9 p.m.
§ Lord Alton of Liverpool
My Lords, it is well known in your Lordships' House that my noble friend Lady Warnock and I fundamentally disagree on the issue of the moral status of the human embryo, but on this occasion I am happy to stand four square with her in supporting these regulations, as far as they go. I shall return to that point in due course.
In 1990, when I served in another place, I argued that donor-conceived children should have the right to establish the identity of their biological parents in the same way as adopted children have the right to find out the identity of their birth parents. Of course, I regret that it has taken Parliament so long to recognise that the rights of a child conceived through artificial insemination and such technologies should he paramount, but I am glad that we have got there in the end. I do not think that such issues could be reduced 357 to a matter of market research, as the noble Earl, Lord Howe, argued earlier. The evidence is pretty clear—there was a report only this morning from the Netherlands which said:A new law that requires sperm donors to be identifiable has come into force in the Netherlands, resulting in a dramatic drop in the number of men coming forward to donate".So we do not need market research to tell us what the consequences may be. The report continued:Women wanting to obtain sperm from Dutch sperm banks are now apparently facing up to two years on a waiting list, since even before the new rules took effect on 1 June.The law, which was passed after 10 years of deliberation, says that Dutch fertility centres can no longer take anonymously-donated sperm samples, and stipulates that all donor-conceived children will be able to find out the identity of their biological father at the age of 16. One Dutch clinic, in Barendrecht, says that the number of sperm donors on its books has fallen, in anticipation of the new law, from 135 to only 15. Dr Jan Karbaat, from the Bijdorp clinic, said, 'I have just placed an advertisement for donors, but got zero reactions', adding that his clinic is considering offering payments for donations.According to reports, a number of Dutch women who want to use donated sperm in order to have a child are crossing the border to Belgium, where donation can still take place anonymously".So the evidence is quite clear. What we are doing tonight does not require market research. Nevertheless, what the Government are doing is right for the kind of reasons that the noble Lord, Lord Clement-Jones, has outlined. Although he knows that I fundamentally disagree with his party's decision to support as a matter of policy motions on issues such as abortion, embryo experimentation, therapeutic cloning and euthanasia, I greatly respect the position that he personally took in your Lordships' House this evening and I agree with everything that he said.
Section 13(5) of the Human Fertilisation and Embryology Act 1990 provides that infertility treatment should not be provided to a woman,unless account has been taken of the welfare of any child who may be born as a result of the treatment".The noble Baroness, Lady Andrews, used the phrase the "paramount rights of the child". However, we have put ourselves into a pretty muddled and confused position over the 14 years since the legislation was first passed.
Recent cases reported in the British press—for example, a man who changed his sex, then entered a same-sex relationship, then had in vitro fertilisation, then decided that they would go to America to be able to screen out the baby in case it might be a boy and would allow the baby to be born only if it was female—illustrate precisely where we have reached as a result of the legislation that was passed 14 years ago and which we did not think through properly at the time.
The Minister in another place, Melanie Johnson MP, recently acknowledged that in the Standing Committee, when she said:The interests of the child come first".—[Official Report, Commons First Standing Committee on Delegated Legislation, 18/5/04; col. 5.]358 Why is it then that these regulations do not operate retrospectively? If there is a principle here, then it is a principle and it should not just be about what happens to those who are born in the future. What about those who have been born in the 14 years that have elapsed? Why is it that a child born using gametes or embryos donated before 1 April 2005 will not be able to know the identity of his or her biological parents, whereas a child born using gametes or embryos donated after 1 April 2005 will be able to find out? That strikes me as inherently unfair and the noble Baroness, Lady Andrews, was right to remind us of the retrospectivity that is operated in the case of adoption. Why should the same principle not operate here? We cannot have it both ways. It is fundamentally illogical in what we are agreeing tonight. We do not need market research to tell us about the implications of this and we need to face these matters four square.
We shall create two classes of donor-conceived children. Surely it will be only a matter of time before a child born using gametes or embryos donated before 1 April 2005 brings a successful legal challenge under human rights legislation. If his or her interests truly are paramount, as the Human Fertilisation and Embryology Act 1990 provides, how can we deny the child the right to know who his or her parents are?
In their authoritative 2002 guide to the Human Fertilisation and Embryology Act, entitled Human Fertilisation and Embryology: Regulating the Reproductive Revolution, Robert Lee and Derek Morgan comment that the withholding of identifying information,may prove to be as unsustainable in practice as it is in all conscience. The present stance in terms of anonymity does little to encourage openness within the new family units that the legislation facilitates".I wholeheartedly endorse those comments.
While reading the Standing Committee debate from another place, I was struck by how much time was spent on discussing the effects of these regulations on the donors, patients and fertility clinics, which of course have a deep interest in all this. But, important as those considerations are, one could not help but think: what about the children?
Many of the arguments against full and retrospective disclosure of identifying information fail to demonstrate sufficient regard for the child's welfare, as set out in Section 13(5) of the Human Fertilisation and Embryology Act 1990. They are more concerned with protecting the personal relationships and feelings of the biological and legal parents. Such issues should be resolved prior to couples seeking infertility treatments and prior to individuals agreeing to donate gametes and embryos. We must face this issue squarely in advance of people having such treatments.
During the Standing Committee debate in another place, concern was expressed about the potential impact that donor identification might have on donor recruitment—a point reflected in our debate tonight. 359 That must be a secondary consideration to the child's paramount interest in knowing who his or her biological parents are. I argued in 1990 that we risked creating multiple cases of identity crisis by denying answers to the fundamental questions: "Who am I?" and "From where do I spring?" Those are answers that every person is entitled to receive.
When potential donors are finally made aware that identifying information will be made available, that may help to impress upon them the enormity of what they are about to undertake. This is not, as my noble friend indicated a few moments ago, a matter of going along and donating sperm or even of being paid for doing so. We are all well aware—I raised it in the 1990 debate—of the cases of medical students who added a sum to their student grants by taking part in this activity without any thought of what they were entering into.
Either this is a moral and ethical debate or it is not. If, as my noble friend said, we reduce it simply to a question of materialism and consumerism and consider it to be on a par with going to the supermarket, I do not think that we shall do anyone any great favours.
I am extremely concerned to learn that the Government intend to mount a public awareness campaign. The Minister indicated that early next year we are to start telling the public about the need for, and importance of, gamete and embryo donation in an attempt to maintain current levels of donor eggs, sperm and embryos as a way of dealing with the concerns that the noble Earl, Lord Howe, mentioned during his remarks. I should be grateful if the Minister could confirm how much public money will be ploughed into that initiative. When she replies, perhaps she would also indicate what will be said in that advertising campaign about the duties and responsibilities that go with bringing a child into the world.
Egg donors, in particular, will be exposed to considerable medical risk, which can, as the Minister well knows, be life-threatening. I hope that she will confirm whether the Department of Health will be responsible for any deaths which may occur as a result of these treatments. What assessment has been made of the risks, and will that be alluded to in the advertising campaign? I consider it to be irresponsible for the Government to promote egg donation when it carries such serious medical risks. Those have not been referred to during our debate thus far.
A line of argument is being promoted—the noble Baroness, Lady Andrews, rather entrenched it this evening—that gamete and embryo donation are in the same league as blood donation. That is palpably untrue. With the latter there is minimal risk and the altruistic act helps to sustain and to save lives. The former, on the other hand, can involve serious medical risk and involves the creation of a human life which will in all likelihood never see the light of day, and which will be frozen or manipulated and then discarded in the course of destructive embryo experimentation.
360 Perhaps the Minister can confirm—the figures were given in an Answer in the other place a few months ago, so I am sure she will be able to confirm this—that more than 1 million human embryos have been destroyed or experimented upon during the past decade since this legislation was passed. However, only 4 per cent of all the embryos produced during that period have ever seen the light of day.
Therefore, I am deeply suspicious about the role of the HFEA and the clinics in the Government's proposed public awareness campaign. They are conflating the role of the watchdog and the burglar. Can the Minister confirm whether all the gametes and embryos donated will be used in fertility treatments? Members of your Lordships' House will have seen over the past few weeks that applications have already been lodged, so will they be used for yet more experiments to develop reproductive techniques that have nothing at all to do with even the therapeutic cloning to which your Lordships agreed two years ago?
I would like to know from the Minister whether those embryos will be used in research projects, particularly those involving embryonic stem cell research. I am sure that she will want to give the House the percentage figures that will be involved. The research industry has a vocal lobbyist in the HFEA and it desperately needs to get hold of gametes and embryos if its dreams for embryonic stem cell research are to be realised.
In this context the Government's public awareness campaign can, of course, be seen as timely. Of course, the use of adult stem cells carries none of the ethical implications referred to in the debate about embryonic stem cells. I welcome that and I believe that in that context good science, good medical practice and good ethics march hand in hand. Therefore, public money would be better spent on appropriate national health schemes such as education and research programmes which deal with the primary causes of growing infertility in this country, in particular the exponential rise in sexually transmitted diseases.
I would like to see the public funds allocated to natural fertility programmes that seek to work closely with couples to overcome the root causes of infertility rather than bypass those through recourse to donated gametes and embryos. The problem with donor recruitment that is envisaged when identifying information is made available should provide greater impetus for the promotion of natural fertility programmes. After all, according to the live birth rate for IVF programmes, it is still appallingly low at around 20 per cent. For the 80 per cent for whom years of treatment in futile IVF is in vitro failure, surely we can find an alternative. How much better it would be if some of the 600 babies who are daily aborted in this country—184,000 every year, some 6 million in the past 30 years and one in five since the legislation was introduced 30 years ago—could be given up for adoption, enabling 100 per cent—not 20 per cent—to parent a child. This country has been in denial about the efficacy and the cost of IVF and its implications.
361 Finally, I ask the Minister to clarify, if she can, the future of the Human Fertilisation and Embryology Authority. These regulations bear the name of that authority, but only last month the Secretary of State for Health, Dr John Reid, announced that in an effort to cut Whitehall bureaucracy there would be a 50 per cent reduction in the number of arm's length bodies such as the HFEA. Is the HFEA to be abolished or merged? We certainly need an answer to that question before we pass regulations of this kind.
While the regulations are welcome as far as they go, I do not believe that they go far enough. I do not believe that they address the far more important and deep issues that we have been denying for so long. Although the Government are doing the right thing, I believe that they are doing it for a lot of muddled reasons.
§ 9.15 p.m.
§ Lord Turnberg
My Lords, like many other noble Lords, I too am strongly in favour of the regulations that give children the right of access to non-identifying information about their biological parents. Even more than that, I believe that it is essential that they can do that for a whole range of reasons set out in the explanatory memorandum and in the regulations. I support the question of the noble Earl, Lord Howe, about why children must wait until the age of 18 before they are allowed access to such information.
I would have thought it not unreasonable for them to have this sort of information much earlier. I also very much agree with the noble Baroness, Lady Warnock, about the need for children born in this way to have the information that they were indeed conceived in this way.
As regards paragraph 3 of the regulations, I am sorry to have to say that, despite the eloquence and persuasiveness of my noble friend Lady Andrews, I am much less persuaded of the validity of a right to identify a biological parent, where that parent no longer wishes to be identified 18 years downstream. There is a balance to be struck here between one individual's right to know and another's right to anonymity: it is not all one way. In other medical matters, we betray confidences and get round anonymity with great difficulty. We put up all sorts of barriers to prevent medical information, and information about oneself, getting out into another domain.
Let me give a couple of examples. Imagine the case of a young man, often a medical student—and here I rush to the defence of medical students—who, perhaps because he has seen the distress of infertile couples, decides to become a sperm donor. Perhaps, under the new regulations, he agrees now to give up his anonymity to any offspring of the donation. Then 18 years later when he is likely to be married, with a couple of children conceived with his wife, he is faced 362 with a biological child—or perhaps five, or 10—who he probably did not know existed. Having agreed originally, he may now feel quite differently about a new-found child, as indeed may his wife, and his children born to her. Some embarrassment, certainly, but much more importantly, a considerable stress may be put on the marriage. We know that nowadays 50 per cent of marriages are shaky anyway.
Then there is the sense of responsibility suddenly acquired. Currently no legal responsibility is envisaged, but who knows what may follow in 18 years' time? In any case, a feeling of some responsibility cannot be denied and financial responsibility may follow, all of which will add to the stress on his own family.
My noble friend Lord Winston, who unfortunately cannot be here today, has given me an example of the woman who donates her eggs to another infertile woman. Often the donor women are going through an IVF programme and the spare eggs are given altruistically to others. But many such women fail themselves to conceive with IVF and they then face the unhappy prospect of meeting a child 18 years later who is genetically half theirs but who they had never known existed. Again, that is a further stress on a childless couple who are likely already to feel deprived. Of course it is possible that some may be pleased with the news, but I fear that more will be most distressed.
It was said that potential donors will be counselled before being asked to agree to being identified 18 years later and then again later, but I believe that the young men will either run a mile or go ahead and live to regret it. Who of us, when we were undergraduates, could have predicted how we would feel in 18 years' time? It therefore seems likely that we will see a fall in the number of sperm donors in the immediate aftermath of the regulations.
Although the experience of Sweden and elsewhere suggests that the numbers bounce back, I suspect that those who come forward will be older and more mature. We would then be losing out on the healthier—I fear that it is the healthier—sperm which comes from younger men than middle-aged men. And all because it is said that children born after donation feel dispossessed. My noble friend Lord Winston tells me that the evidence from his clinics shows that those who feel this way are likely to be in a small minority. Yet the potential damage this change in the law may inflict on others has barely been examined.
Clearly, today is not the day to try to remove these regulations, but I believe that we need much more evidence and more research into the full impact on all participants, not just the children and the parents rearing the child. I hope that I can persuade the Government, at the very least, to support more research into the impact on donors and their families of the loss of anonymity and to reconsider this whole issue in the light of that research when the 1990 Human Fertilisation and Embryology Act is revisited, as I hope it will be.
My Lords, I did not intend to speak, but hearing lots of my colleagues speak this evening has provoked me to do so. First, let me say that I support the Government on this Motion. I am also persuaded that the rights of children are paramount over the rights of infertile couples, or any other couple.
Bringing the law into line with that on adopted children is also correct, as my noble friend Lady Warnock said. I agree with all that the noble Lord, Lord Clement-Jones, said except that this is an ethical issue. To me this is beyond an ethical issue, it is a rights issue. It is about the right of children to know their biological identity.
I accept the arguments put forward very powerfully by the noble Lord, Lord Turnberg, about identifiable information being available. I have heard the arguments both from the British Fertility Society and my own college about how this change may create a problem, particularly with the falling numbers of sperm donors. The arguments and the examples produced by the noble Lord highlight that. I support the idea that more research should be carried out and that we should address the results of that research when we debate the matter further in due course.
However, today, all the briefs I have received from fostering, adoption and other agencies, the HFEA, the British Fertility Society and the college do not persuade me that this order should not be supported; and I support it.
§ Lord Mackay of Clashfern
My Lords, this is a particularly significant debate for me because I, along with my noble friend Lady Hooper, had the responsibility of presenting the Bill which became the 1990 Act to this House following the report of the noble Baroness, Lady Warnock, and her committee.
I recall that this particular matter—the identification of the donor—required a good deal of thought at the time. My recollection is that the main reason for adopting the stance taken in the Bill on this point was the belief that unless anonymity was afforded to the donors, the likelihood was that the system would never get off the ground.
It is now 14 years since that happened, but I think that there must still be a question about exactly what effect the change will have on the willingness of donors to come forward, particularly, as the noble Lord, Lord Turnberg, said, donors in the age bracket when their donations are likely to be the most valuable.
It is a difficult question. I entirely accept, and have always accepted, the importance and the paramountcy of the interests of the children. But unless a donor comes forward in a particular case, no child will emerge in that instance. So, in a sense, this is anterior to the question of the entitlement of the child because if there are no donors, no children will arise. That was the issue. At the moment I must say that I find it a little difficult to know the exact basis on which the Government are optimistic that this change will not seriously damage the programme in this respect.
364 The very fact they seem to be proposing a fairly extensive advertising programme suggests at least a fear that that this may have a contrary effect. The other point I think is worth mentioning—I think the noble Lord, Lord Turnberg, also referred to this—is the question of ultimate responsibility. In her very clear introduction of these regulations, the noble Baroness mentioned the fact that any legal liability is excluded, but of course such legal liability is excluded only by the terms of the Act. This regulation shows that the terms of the Act are not by any means like the laws of the Medes and Persians. Therefore, some degree of liability should arise.
I am entirely in favour of non-identifiable information being allowed and I agree with those who asked why wait until 18. It may well be very important in connection with some illness in the child much earlier than that. We have seen a good deal of development in relation to the genetics of illness, and the precise situation in that respect might be extremely important. I am not sufficiently technically aware of the situation to know to what extent non-identifiable information can produce sufficient detail to enable a clinician to deal with this particular matter, but in so far as it is necessary for a clinician to be able to deal with the health of the child, I would hope that the necessary information would be available.
At present, I think that the general view of those who have spoken is that these regulations will not be opposed, but I think it is right to express some concern about their impact. The fact that such a distinguished practitioner in the area as the noble Lord, Lord Winston, has concerns about the issue certainly makes me—as by no means a practitioner—rather concerned.
§ Baroness Andrews
My Lords, it has been a very distinguished debate and I am particularly glad that the noble and learned Lord, Lord Mackay, was here to take us back to the origins of these regulations. As we expect in this House, the dilemmas which are represented by the professions and people outside are well represented here. Although it is unusual for me to find myself not in agreement with my noble friends Lord Turnberg and Lord Winston—the latter could not be in his place—we do of course listen very closely to their views, as we listen to those of all who have spoken in this debate. It has been extremely thoughtful indeed.
I do not want to reiterate any of the detail, but will try to address the issues that have been raised. They have ranged fairly far and wide, but it seems that one of the overriding questions has been the issue of the shortage of donors. While noble Lords have welcomed the idea of a campaign, some issues have been raised about it. As the noble and learned Lord, Lord Mackay, put it, why are we right to be optimistic? Indeed, the noble Earl, Lord Howe described this as "blind optimism". In so far as our policy has to be evidence-based, I think that we have used the evidence that is available. This suggests that there may well be a temporary drop and we must be prepared for that. This is why we have put aside 365 £200,000 to be invested in the campaign in the first instance. Trying to draw in new donors and to make them—I address this point particularly to the noble Lord, Lord Alton—fully aware of their responsibilities is a very serious undertaking. Those responsibilities are greater now that they include the potential for being identified.
Apart from a campaign—and it is something which we have every intention of taking seriously——I should like to make some other points about the supply of donors. It is possible that fewer live births per donor will be permitted under the regulations. The noble Earl, Lord Howe, raised that issue. The number might he three or five, rather than 10, so we will need to increase the number of donors. Two hundred sounds like a small number of donors, but there is a high attrition rate, and there is a huge gap between the number of people who put themselves forward and the number of those eventually selected. It is a serious undertaking.
§ 9.30 p.m.
§ Lord Alton of Liverpool
My Lords, before the noble Baroness leaves the issue of the campaign that is to be waged next year, I want to know the answers to my two particular questions about the cost of the campaign and whether it would emphasise the risks to women involved in egg donation.
§ Baroness Andrews
My Lords, I answered the question on cost: £200,000 has been set aside. As for the risks to women, every donor who comes forward for egg donation or sperm donation is told whether there are risks to their health. We will continue to do that.
Another reason why we can be fairly optimistic about our stocks of gametes is that, although it is hard to get the information, some clinics tell us that their stocks are high and that they have enough for a year and some tell us that they have stocks for more than a year. So, we have a temporary respite. We will, of course, liaise with the National Gamete Donation Trust to make sure that clinics are as fully prepared as possible. We also know that the technology is changing. I understand, for example, that, in Sweden, there are new technologies that enable sperm to be kept for longer. We are not going into an identical situation, and we can bring in gametes from other countries, provided that we can source them and identify them. So, there are other sources. I hope that that helps noble Lords to understand the background.
Several noble Lords raised the important issue of research. The research that I quoted is unpublished, which is why noble Lords will not have come across it. It is about to be published. The researchers are well prepared to do further work, and we will look at it with great interest. I take what the noble Earl, Lord Howe, my noble friend Lord Turnberg and the noble Lord, Lord Patel, said on that point. We recognise that, as the noble Lord, Lord Alton of Liverpool, said, there is 366 a need for more research on infertility, and we are putting increasing amounts into medical research as a whole.
We would consider whether there was a need to widen the scope of the 1990 Act to cover fresh sperm, if we needed to take such a step. The noble Lord, Lord Alton of Liverpool, spoke about how women should not be put under pressure to donate eggs. It is a fundamental part of the whole arrangement that people are not put under pressure. They are voluntary donations. When it comes to egg sharing and altruistic egg donation, a great deal of counselling goes on. I was not making a direct allusion between blood donation and gamete donation; I was simply commenting that the notion of a gift relationship goes back a long way.
The noble Lord also asked why the measures were not retrospective. Historically, donations have been made under conditions of the strictest anonymity, and we would break faith with those donors if we made the legislation retrospective. That is an ethical position that I think the noble Lord will accept.
I was also asked about the future of the HFEA. The noble Lord is right: there is a review of arm's-length bodies, including the HFEA. We will have to wait for the outcome, as the matter is still under consideration.
In relation to the details of the advertising campaign, we are developing that campaign by liaising with the National Gamete Donation Trust, the Infertility Network, the Donor Conception Networks and the clinics themselves, so it will be put on a sophisticated footing.
I was asked why we do not allow information to be made available to those under 18. The age of 18 is in the primary legislation and these regulations cannot address that. That is why the information will become available at that point.
The noble Lord, Lord Alton, asked whether embryos can be donated for uses other than fertility Treatment; for example, stem cell research. Embryos are donated with informed consent, and this must include informing the donor. It does include research, including stem cell research. I cannot give the noble Lord the figures he seeks, but I will certainly do so if I can.
I hope noble Lords will forgive me if I have left any other questions unanswered. I shall not reiterate what I have said. I am grateful for the support the regulations have received. We are acting in good faith. While I would not say that we are dealing with futurology, it is certainly difficult to know what the world will look like in 18 years' time. We have done our very best to keep faith with all the people involved in these provisions, but we cannot be expected to have all the answers. I believe that the changes achieve a balance of rights and interests and I am happy that they seem to command the majority of opinion in the House.
On Question, Motion agreed to.