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Baroness Williams of Crosby: Before the noble Lord finally sits down, may I ask him two questions relating to this important issue, which could shake the
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Lord Darzi of Denham: At the moment, we are collecting a significant amount of data which we have not been able to analyse for the past 17 years. Certainly, the type of data that we will be collecting for the future is not dissimilar as far as the data set is concerned. If the Bill receives Royal Assent, I have no doubt that there will be tremendous interest from the scientific community in trying to analyse some of the data. The question arises of how much of it needs to be identifiable. I have no doubt that we will debate that when we come to the secondary legislation to which I referred.
Baroness O'Cathain: Before the Minister finally, finally sits down, could he explain two things? First, can the data be cleaned to eliminate any name or identification that could be used to get back to a living person? With all the stuff that was going on, I did not quite understand whether that would be feasible. Secondly, would—horror of horrors—there be an opportunity for commercial sharks to get their hands on the data and sell them?
Lord Darzi of Denham: I am grateful for the noble Baroness’s intervention. The data released will be based on the research proposal application, and that is under strict guidance based on whichever model we decide to use to release those data. If the research involves a longitudinal study, which means following up the child conceived through IVF, the only way you could achieve that is through contacting the child and, subject to certain conditions, having a follow-up study—ICSI being one that I referred to earlier.
Lord Patel: I thank the Minister and the noble Lords who have taken part in this debate for their comments. First, the amendments have nothing to do with donated gametes or so-called artificial gametes—a better term would be biologically programmed. They are to do with the confidentiality of information relating to only those couples who seek IVF. It is not my intention for the amendments to be interpreted more widely. My intention is to bring the information of those seeking IVF treatment in line with other medical confidentiality regulations for their better care. I beg leave to withdraw the amendment.
Amendment, by leave, withdrawn.
[Amendments Nos. 64B and 65 not moved.]
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Clause 30 [Regulations under the 1990 Act]:
[Amendments Nos. 65A to 65B not moved.]
Lord Alton of Liverpool moved Amendment No. 66:
The noble Lord said: In what I know the whole House hope will be the temporary absence of the noble Lord, Lord Brennan, for reasons of which we are all aware, I am moving the amendment standing in his name. As Members of the Committee know, the amendments propose the creation of a national human bioethics commission—a proposal for which the noble Lord, Lord Brennan, argued with his customary eloquence at Second Reading. He has argued and canvassed widely for the proposal over an extensive period. I can do no better than refer the Committee to the memorandum submitted by the noble Lord to the Joint Committee, which appears on page 271 of its report:
“This proposal suggests the formation of a National Bioethics Council for the UK, to be given statutory foundation in the proposed Human Tissue and Embryos Act. Such a body would have a diverse membership on terms laid down in statute, would be supported by public money and would be separate and independent from particular government departments and agencies, having no regulatory, administrative or quasi-legislative functions. Its purpose would be enhance the democratic process by providing the material to support better informed public debate, so that decisions on contentious matters in the life sciences would be supported by an informed public view and could be taken in a more democratic and inclusive fashion than they are at present”.
I was also struck by the penultimate and concluding paragraphs—paragraphs 48 and 49—in his memorandum, which state:
“Overall, such a body would foster informed public and legislative debate on critical new issues in the life sciences, building consensus where possible and increasing the democratic legitimacy of decisions that cannot be universally popular ... In the UK, it was only in the latter part of the 20th Century that serious attention was given to bioethics, albeit in the disparate fashion criticised above. In the 21st Century it is certain that the life sciences will create issues of regular and profound public interest with increasing rapidity”.
Those words seem almost prophetic in the context of our debates in the preceding three days of Committee and today. I am grateful to Dr Brian Iddon, a Labour Member of another place, who reminded me yesterday of the decision taken in recommendation 85 of the 2005 Science and Technology Committee report to,
- “recommend the formation of a single commission to develop policy issues relating to the assisted reproduction, embryo research and human genetics”.
The argument has been widely canvassed, and the Committee is well aware of it. However, I shall try to summarise the core arguments for the creation of such a national bioethics commission. In Britain, as in other societies, we find ourselves in a situation in which those who make policy, who implement it and
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In recent decades, we have become increasingly aware of the ethical dimensions of policy and practice. It is not enough to ask about what has been done in the past or what could be done in the future. We also need to address the question of what should be done. That is in part a matter of prudence, effectiveness and efficiency, but it also has an important and ineliminable ethical aspect. Ethics comprises the identification of values and principles, but also surely the determination of their appropriate application in particular fields and cases. That is no easy matter, particularly given the diversity of moral, social and religious perspectives that characterises contemporary society. At the same time, however, there is widespread agreement on the importance of ethics. Among those who reflect on such matters, there is general agreement about the centrality of such values as welfare, autonomy and respect, and growing recognition that they cannot be reduced to a single value but must be maintained in some kind of balance. I was struck in our preceding debate by how my noble friend Lord Patel and the noble Lord, Lord Winston, were arguing, understandably, for the use of information to develop research to ensure good medical practice. Of course, the noble Earl, Lord Howe, made an equally valid point about the protection of the individual. It is important to get the balance between the conflicting questions right.
Bioethics brings together philosophy, science, medicine and healthcare but increasingly recognises the need to have regard to broad social interests, as well as the needs and concerns of specialist groups. The problems are pressing, the concerns widespread and the issues difficult, but resources can be brought to bear to provide policy-makers such as ourselves and others with information, advice and guidance. Hitherto individuals, organisations and institutions have directed their attention to bioethical issues, but surely it is time to establish a national resource, responsive to UK needs and, though independent of government, responsible to the nation through Parliament.
Bioethics is well developed among academics, and for some years has featured in medical and healthcare education. Patient and other service-user groups are also increasingly aware of the ethical aspect of their interest. In addition, religious faiths, denominations and other value-based communities and organisations have focused attention on bioethical issues generally in response to the developing or prospective practices in which they have particular interests or concerns.
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Out of this background have emerged a number of academic journals, societies and research groups, usually university-based, as well as a growing cluster of voluntary organisations, large and small. Publications such as the Journal of Medical Ethics, or bodies such as the Nuffield Council on Bioethics, represent highly professional standards of research and dissemination, and good work has also been done by small but
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In other parts of the world, it has come to be recognised that the scale, importance and difficulty of bioethical issues calls for the establishment of national committees within which these can be analysed, reviewed and debated with the purpose of informing society and policy-makers. In March 2005, the European Conference of National Ethics Committees known as COMETH, produced a report on the functioning of the 42 national committees which comprise its membership. As this figure indicates, COMETH membership includes more than one committee from each European nation. They range from self-created voluntary associations to standing committees established by statute. There are two United Kingdom members: the Nuffield Council on Bioethics and the Scottish Council on Human Bioethics.
In Austria, Belgium, Denmark, France, Germany, Italy, the Netherlands, Portugal, Sweden, Switzerland and other countries, Governments or Ministers have established national bioethics committees. The constitutions, remits, operation and achievements of those bodies are relevant to the establishment and responsibilities of a United Kingdom national bioethics committee. The Danish and German models are widely admired, but several others also have good features.
The idea of a United Kingdom national bioethics committee has arisen in the past, but in recent times it has re-emerged with greater urgency and definition in response to the growing number of difficult issues and decisions. One focus of these has been the review by the House of Commons Science and Technology Committee of the operations of the Human Fertilisation and Embryology Act and of the HFEA. In the course of that review, members of the committee and witnesses to it spoke favourably of the idea of a national bioethics committee, and in the same period Professor John Haldane, Director of the Centre for Ethics, Philosophy and Public Affairs at the University of St Andrews, the leading UK philosophy and policy centre—I declare a nonpecunary interest as a visiting fellow—has pressed the case in several contexts, as my noble friend Lord Patel is well aware, including in letters to the Times and the Telegraph. Calls for the establishment by the Government of a United Kingdom national bioethics committee have also been made by the Archbishop of Westminster and by the Chief Rabbi, Dr Sir Jonathan Sacks.
Such a committee would have the authority and standing of an independent statutory body. Its membership should encompass relevant professional expertise, patients and other user-group interests, as well as major religious and ethical groupings. Membership must reflect the diversity of positions within society, and appointment procedures must be public and transparent. Although independent, such a committee
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Amendments Nos. 66 and 67 seek to establish such a body. Some have argued for a new in-house Westminster committee. It is open to the authorities in both Houses to produce a body if they feel that that would enhance the work of the existing Select Committees. Those two ideas are not mutually exclusive; indeed, they could complement one another very well. That is not a legislative issue. A national bioethics committee is, and that is why the noble Lord, Lord Brennan, drafted these amendments. We all eagerly await the return of the noble Lord to his usual place from where he will, with his customary and characteristic persuasiveness, be able to argue for such a body at Report and offer us many more insights and arguments than I have been able to do today. I beg to move.
Lord Turnberg: The noble Lord, Lord Alton, makes an extremely good case for a forum at which the many and varied ethical issues that we face in Parliament and in the public can be examined in great depth. It could take evidence and advice from a wide background of sources and produce well-informed and well-researched reports which set out the pros and cons of the issues. That is what came out of the report by the Select Committee on Assisted Dying for the Terminally Ill, which was chaired so wonderfully by the noble and learned Lord, Lord Mackay of Clashfern. It was an excellent example and extremely valuable to this House. I am very supportive of the principle, if not the specific type of committee which is being proposed. As the noble Lord mentioned, we have the excellent Nuffield Council on Bioethics which produces valuable, informed and authoritative reports. They do not necessarily cover all the areas that we might need or want but it produces very good reports. We also have a tried and tested in-house mechanism which does not require a completely new and expensive bureaucracy—the Select Committee structure. A new standing all-party Select Committee of both Houses—or perhaps just the House of Lords—could be set up to examine specific ethical issues, to take all the evidence it needs and to produce reports which would be debated in Parliament. I hope the noble Lord, Lord Alton, will think about this possibility and I also hope the Minister will take it on board.
Baroness Deech: The idea put before us is a good one in principle but I think it has been oversold for three reasons. We already have the Human Genetics Commission, we have the Nuffield Council on Bioethics, we have reports from the Wellcome Institute and we had excellent reports from all our professional and learned societies. About 10 years ago, when Dolly the sheep was born and cloning and stem cells began to
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I support the notion of the noble Lord, Lord Turnberg, that Parliament should have a Select Committee because Parliament governs this field—the legislation passed by this House and the other place. The countries listed by my noble friend Lord Alton which have ethics committees are all either deeply religious or totally unregulated, or both. In my experience, the further south and east you go in Europe, the more these committees are dominated by religious people—not that there is anything bad in that, but they can be used to hold back the progress of the law. In the USA, the bioethics commission, it has been alleged, is filled with people who support the President’s view, whoever is the president of the day. Its reports have regularly been ignored and they have been forward-looking. Parliament is ultimately the ethical regulator. This is a country governed by law and that takes me to my final argument, which is that not much can be achieved by a bioethics commission.
I speak from my experience chairing the Human Fertilisation and Embryology Authority, which is a working office that is open every day. It was always on a Friday afternoon that a parent or a clinician would call. I remember one particular Friday afternoon a surgeon called saying that he had a little boy patient, aged about two, who had leukaemia. The treatment of chemotherapy and radiotherapy was going to start on Monday and it seemed very likely that it would destroy the little boy’s future fertility. The surgeon had had a bright idea. He wished to remove a small slice of the toddler’s testicular tissue while it was undamaged, freeze it, and, maybe in 17 or 20 years’ time, when the boy had, it was hoped, recovered, reinsert the tissue in the hope that healthy sperm would grow. “Can you please”, the surgeon said, “give permission for this on the spot because chemotherapy is going to start on Monday?”. In a situation like that, you cannot say, “This is extremely interesting and novel. We would like to refer it to the National Human Bioethics Commission, which will issue a report in several years’ time and be placed before Parliament”, and so on. It is the law that governs and it has to provide an answer in those situations. I am happy to say that the answer provided by the law was, “Yes”.
The phone rang on another Friday afternoon, and the question from a hospital was, “We have removed the sperm of a dead man. Can we keep it?”. Again, you have to give an answer that is within the law, as best you can. While a human bioethics commission may do no harm, if it is not used as tool by those who might want to hold back progress—which is possible—I am not sure how much short-term good it can do by comparison with the committees we already have. The choice of members would be extremely problematic and it would demand very skilful chairing. As we are on our fourth day in Committee on this Bill, I need hardly point out to your Lordships that the more experts you have on this topic, the more opinions there are. In the end, by negotiation through Parliament, these things have to be decided within a legal framework.
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So I would conclude: probably no harm, but possibly; although I am afraid it would not be much good, remembering that it is always happens on Friday afternoon.
Lord Northbourne: Surely the process of making wise decisions depends on a balance between the advantages and risks of that decision. What has troubled me about our debates during the past four days is that we have heard from three extremely expert clinicians about the advantages of the proposals. I accept those advantages, but I do not think that we have heard practically anything about the possible risks. The risks may be more hypothetical than the advantages, but there should be someone who sits down and thinks about the risks that might arise from the processes that we are legitimising. I am not holding back progress, as my noble friend suggested. It is a question of whether progress is wise and whether it is, in fact, being made in the right direction. I do not know if this bioethics commission would have that function of looking at the long-term picture, but if it would, I would be in favour of it.
Lord Winston: I am a little surprised. I thought that the speech I had just made was entirely about the risks. The clinicians are thinking very seriously about the risks in everything we do.
Lord Northbourne: I am not referring to the immediate clinical risks; I am talking about how these techniques may be used by people who want to make money out of them, by people who want to control populations in political situations and so on. I read in the paper only the other day—and I do not think it has been mentioned in this Committee—that an organisation in California collects and stores the sperm of famous people and sells it for hundreds of thousands of pounds per dose. This is a kind of abuse—and there may be many others. What I am saying is that I do not know the abuses; no one has told me what the abuses might be. That is the weakness in the debate we have been having.
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Lord Winston: On a point of information, I understand that the particular organisation which stores the sperm of Nobel Prize winners has gone broke. It was not able to maintain itself and no one really wanted its services.
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