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I want to concentrate on the use of existing cell lines which we are told were lawfully stored for research purposes immediately before the commencement date, or which are derived from human cells which were lawfully stored for those purposes at that time. They were given for those purposes, so why are they not used for such purposes? The force of the amendment shows that the Government consider that the consent given for research purposes is not adequate to cover research using human admixed embryos. I do not understand how those cell lines could be useful in connection with human admixed embryos. Whatever may happen in the future, I understand that the present position is that human and mixed embryos are used in the process of research because of the scarcity of human eggs. To get over that difficulty admixed human embryos are used, using cattle—cows or some other animal.
That has nothing to do with stored cell lines as I understand it, so this is a different situation which should be covered from the consent that was given. It is extremely difficult to say that this is in any way consistent with Article 8 of the European Convention on Human Rights. It is difficult to connect the scientific purpose that has been the foundation of this amendment with the use that is to be made in connection with human admixed embryos. The purpose is to supplement the difficulty arising from the scarcity of these eggs.
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Lord Alton of Liverpool: My Lords, I support the noble Baroness, Lady Knight, because her Amendment No. 92A should command widespread support throughout your Lordships' House. The arguments have already been put extremely well, not least by my noble friend Lord Neill. Noble Lords have emphasised the importance of looking again at the implications of Article 8 of the European Convention on Human Rights.
I follow the noble Lord, Lord Waddington, in emphasising the importance of parliamentary scrutiny. Your Lordships' House is regarded as the guardian of our legitimate rights and as probably the only place—it is certainly the case in this instance—where issues of this sort can be properly and thoroughly scrutinised. Some 260 new lines have been added to the Bill. They were not part of the Bill when it left your Lordships' House, and they were added after the assurances we were quite sincerely given by the noble Baroness the Leader of the House, who we all respect. She told us emphatically that:
“The Bill sets out to ensure that human and human-admixed embryos may only be created for research purposes, and only where the person to whom the cells belong gives their explicit consent”.—[Official Report, 21/1/08/; col. 52.]
There is no doubt that that was said with sincerity on the Floor of the House, and it was repeated, in effect, in the letter that the noble Lord, Lord Darzi, sent to us in January. He wrote:
“This is likely to include a person’s right to determine under what circumstances their genetic material is used to create a human embryo or human admixed embryo”.
Referring to Article 8, he wrote:
“The use of a person’s genetic material, without their express consent, to create embryos and their subsequent use and storage would interfere with a person’s rights under Article 8 of the convention”.
Nothing has changed since we were given those assurances in January, except for what is now in the Bill. It was guillotined in the other place. Only 14 Members were present at the debate that took place in the Standing Committee, which means, in effect, that 632 Members were prevented from having any say on these provisions because when the Member of Parliament for Stone, Mr Bill Cash, moved an amendment to do what the noble Baroness, Lady Knight, is seeking to
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We have been told about the legal opinion given by Aidan O’Neill QC. A further opinion has been given today by Mr James Bogle of 10 Kings Bench Walk, Temple, who reaches the same conclusion. He wrote:
“For all the reasons that I have canvassed above, I consider that there is good reason to consider that a successful challenge could be mounted against the presumed and substituted consent to research provisions of the Bill and I am not satisfied that the government’s claims, upon advice, that these provisions, without the inclusion of any further and/or better safeguards, are all Convention-compliant is sufficiently well-founded”.
This level of advice and the conflicting views we have heard about the compatibility of Article 8 make it doubtful whether the words on the very face of the Bill stating that it is compliant with the European Convention on Human Rights are accurate. That should surely make us want to consider this further. We would not be doing our job properly if we did not now take the opportunity to send this part of the Bill back to another place so that they have the chance to debate these provisions, to look at their compatibility and decide how best to proceed.
I conclude simply by reminding the Minister of what happened in my own city of Liverpool at Alder Hey children’s hospital when science went too far. Presumed consent was believed to be in the interests of patients and organs were taken from children. It brought a wonderful children’s hospital into total disrepute. The National Health Service had to think again, very thoroughly, about these questions. This could jeopardise the whole altruistic and well-founded movement of people providing organs and tissue for medical purposes, if they believe that the state is taking on the vestiges of an authoritarian entity that decides it knows best. The noble Baroness, Lady Knight, is right to remind us of the importance of these questions. I hope noble Lords will support her amendment.
9 pm
Baroness O'Cathain: My Lords, I want to make two quick points. Of course I support the noble Baroness, Lady Knight; what she said was brilliantly described. First, there has been no public consultation whatever on this. Is that a democratic process? Secondly, there are those, and I am one of them, who have decided in their wills to leave their bodies for medical purposes. If I knew, as I now do, what might happen, I am afraid that will be stopped. I have always been a supporter of donor cards, but the whole thing would be such a disaster that we really have to think again.
Baroness Barker: My Lords, I wonder if I might delay the House slightly to make two points in particular. I am moved to speak by the use of the word “sinister” by the noble Baroness, Lady Knight of Collingtree. I repeat something that I have said many times: I thank the noble Baroness for raising these issues, as she has consistently over the years, in order to bring them to the attention of your Lordships’ House and the public. However, there is a difference this evening. Listening to the contributions, one would be forgiven for forming
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We are suffering to an extent from a very partial portrayal of the events that have led up to this moment. There is partiality in that people have forgotten that this House and another place spent a considerable time—not only in their Chambers but in a Joint Committee—looking at the issue of consent when the Mental Capacity Act was going through. There was detailed consultation on that matter with a wide range of bodies, ranging from the Catholic Church to disability organisations. They were specifically asked about that issue. It was the considered opinion of another place and your Lordships’ House that, with very strong and explicit caveats and safeguards, people who lack capacity should, in certain circumstances, be able to take part in research. I well remember Members of your Lordships’ House who have a disability talking movingly about the need to make sure that people who lack the capacity to make some decisions should still be allowed to decide to take part in medical research.
The other partiality this evening is the proposal that the Government said emphatically on 21 January that they would consider this no further. That is not true. The noble Lord, Lord Neill of Bladen, read out an extensive excerpt of what the noble Baroness, Lady Royall, said that night. She also said that she heard the sentiments in this House and would take these matters away for further consideration. It is for the noble Baroness, Lady Thornton, to explain the Government’s thinking to us. I happen to agree with Members of this House who think that the processes in another place are deficient. I agree that there has been a lack of scrutiny by elected Members, but I do not believe that it has been to the degree that has been indicated this evening or that there has been some kind of conspiracy.
I return to my original point: it is not a matter of being sinister. In fact, the scientific community raised these issues. They raised the issue of the existing stem cell bank. They raised the issues of children who lack capacity and have life-limiting diseases to the extent that they will not reach adulthood. They raised the question of adults with mental capacity issues. Why? Because they wanted those issues to be brought before Parliament and for legislation to be properly formed. When we come to make our decision on this, we should do so in a way that sets out the proper background to the point we are at.
Lord Elton: My Lords, they may not be sinister, but they are startling. That is what gives point to our deliberation this evening. It has been and is being a fascinating debate because it has a sort of hybrid character, with little Second Reading paragraphs coming in and Committee points being raised. Then we have the whole question of the constitutional procedure, on which I shall add a word to what my noble friend Lord Waddington said.
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As a second Chamber with a watching brief on constitution and procedure, we must be aware of what is happening in the other place, even if we are not entitled to express our opinion to it. What has happened in the other place colours our reception of what arrives here from there. A large and, for laymen—such as most of us on this matter—complex series of paragraphs has been introduced which has elicited speeches, such as that of my noble and learned friend Lord Mackay of Clashfern, crying out for a discussion in Committee. I would like to ask questions about our friends “C” and “P” in particular, who have very chequered histories through the paragraphs in Amendment No. 92; they are ill in all sorts of ways, incapacitated in others and finally dead, but still contributing to the human species. All of them give their human, although not their other, selves, I see.
One could make those points in Committee, but not in a debate like this. I regret that we are being asked to deal with these fundamental, important and complex matters through a procedure that does not allow one, as I have been reminded this evening, to speak after the Minister as one can in Committee. Most of one’s real questions bubble up following what the Minister has said in reply. If the reply is inadequate, one cannot say so. One cannot test it. It is there, then followed by a whipped vote and the matter is closed. I ask your Lordships to support my noble friend not only for the merits of the amendments under consideration, but for the important procedural points that accompany them.
Lord Patel: My Lords, my name has been mentioned in relation to these amendments. The previous amendment I had tabled in Committee was directly related to the archival material that could be used for research. I do not want to re-rehearse the whole argument, because it took hours then and the time is late now.
Why do researchers want the ability to use this archival material obtained from children and adults with serious diseases? In the case of children, I have used the examples of diseases such as Batten disease, lissencephaly and nonsyndromic renal hypodysplasia. These diseases and others cause abnormalities in children’s brains and kidneys. The majority of those children die in the first two years of life. We do not understand why brain cell development in these children is abnormal from the very beginning. What genetic and biological mutations occur so early on in the development of an embryo, maybe, to cause these defects? The only way to study these is to take the archival material from these children and, now that we have the ability, put it through to create pluripotent stems cells using these tissues, and begin to understand the fault that lies in the early development of these neuronal cells.
The other example I used was in adults, with material collected, over many years, of conditions such as muscular dystrophy, some of which is genetically related. After many years, we have collected only 50 such samples; they are in a tissue library in the United States. All this material was given with consent for medical research, lawfully obtained. The ability to take these tissues from people who suffer from this particular type of muscular atrophy and to learn what goes wrong at an early phase of development is very
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Baroness Thornton: My Lords, the amendment tabled by the noble Baroness, Lady Knight, would remove all those important exceptions that were so passionately argued for by the noble Lord, Lord Patel, and many others during previous debates.
I will attempt to address all the issues raised by noble Lords. I must first address the question of whether the Government’s position has changed on this issue. As the noble Baroness, Lady Barker, said, my noble friend had said that she would take this away and consider it. Very often in your Lordships' House, noble Lords are pleased when the Government do that and then decide on a different course of action. We regard that as one of the things we are very good at. I will go through the reasons why we did that; we have, of course, taken advice.
Throughout the progress of the Bill, we listened carefully to the debate and considered our position accordingly. We reviewed our position on using cells in exceptional circumstances to create embryos for research without specific consent. The issue of interference with Article 8 of the European Convention on Human Rights was the position we revised on further information we received and which concluded that interference in this case was justified and proportionate.
We identified that the use of cells to create embryos raised human rights issues under the article, and our view is that the principle of that has not changed. However, under the convention, interference with Article 8 can be lawful if justification can be shown for such interference which is necessary and proportionate. When this issue was first debated, the Government were not aware of sufficient evidence that would justify the removal of consent. However, following the evidence that emerged as a consequence of the debates in your Lordships' House and consultations with the Academy of Medical Sciences, the MRC, the Wellcome Trust and medical research charities, it became clear that the justification for an interference could be made provided that this was subject to stringent safeguards and limitations and that the exceptions to consent would be carefully drafted to reflect this. In short, the Government’s analysis of the convention has not changed but the evidence and the guidance available have.
9.15 pm
The Government wrote to the Joint Committee on Human Rights about this. I have a letter to the chair from my right honourable friend in the other place, Dawn Primarolo, in which she specifically raises the issues I outlined in my opening remarks on why Article 8 was compatible. I could read these out but they are quite lengthy. Yet they clearly draw the attention of the Joint Committee on Human Rights to this issue in full and the discussions that have taken place in this
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The noble Baroness, Lady Knight, was concerned that the researcher has to be satisfied that the person has a serious medical condition. The researcher would have to satisfy the HFEA that all the conditions were met before a licence would be granted. It is not that some researcher dreams something up and then goes ahead with it. A large number of conditions have to be fulfilled, which are outlined in the Bill. That is why it is quite a lengthy amendment. On the issue raised by the noble Baroness of requirements having to be met, all the circumstances have been set out and they would have to be met.
The noble Baroness raised the issue that a child’s tissue should not be used without consent. A child’s tissue can be used to create an embryo only in limited circumstances, as I have previously set out. In other circumstances the use of tissue from children can also be used with the parents’ consent under the Human Tissue Act. That is not unique to this legislation. The noble Baroness drew attention to the fact that the word “reasonable” was used eight times. It will be for the HFEA to determine what is reasonable; for example, the reasonable grounds for believing that research of comparable effectiveness could not take place. I repeat again: this will not be for the researcher to determine but for the HFEA.
The noble and learned Lord, Lord Mackay, raised the issue that the amendment does not require that this will be of help to the person from whom the tissue has been taken. The person from whom the cells are derived may be seriously ill and may die before they could benefit from any treatment. Yet the Bill requires that it must be used to develop treatment for someone with a similar condition. This provision mirrors that in the Mental Capacity Act. The noble and learned Lord also raised the issue of stored cells and human admixed embryos. Cells that are stored from someone with a particular condition could be used with an animal cell. This could enable stem cells to be derived which could be studied to learn more about the process and mechanism of the disease.
The noble Baroness, Lady O’Cathain, raised the issue of the donation of her body to science. I hope it will help to allay her fears that an objection can be registered to ensure that tissue is never used to create embryos for research. One of the conditions under paragraph 15G is that cells cannot be used to create embryos if the researcher has any information at all which suggests that the donor would have objected.
These amendments are important for those rare exceptions where it may be appropriate for research to be carried out on tissue from someone who is not able to consent. To prevent this research would place unnecessary limits on finding potential cures. The stringent safeguards are appropriate and will ensure that this research will take place only where absolutely necessary. The provisions were debated previously in this House and also during debates in Committee in another place.
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These amendments were tabled in response to the compelling arguments put forward by the noble Lord, Lord Patel, and others in this House. They are also supported by the Academy of Medical Sciences, the Association of Medical Research Charities, the Medical Research Council and the Wellcome Trust, which provided briefing for today’s debate.
These exemptions are rooted in exceptional circumstances. The potential for benefits to sufferers of serious conditions is too great to overlook, and any research that can be undertaken in the hope of better treating or curing these conditions must be allowed to continue.
On that basis, I invite the noble Baroness to withdraw her amendment, and, if she presses it, I invite the House to resist it.
Earl Ferrers: My Lords, before the noble Baroness sits down, could she answer the very telling question put by my noble friend Lord Waddington and the noble Lord, Lord Alton? There are 211 new lines in the Bill that have not been discussed by another place. It is groundbreaking stuff, which many of us do not understand and on which many in the House of Commons ought to be able to give a view. Would it not be good if, irrespective of its content, my noble friend’s amendment were accepted to give the other place the opportunity to discuss these matters?
Baroness Thornton: My Lords, I thought that I had said that this amendment and these issues have been discussed at length in this House and in another place. The reason that the amendment is so long is that it covers in detail the stringent requirements that we are introducing. Research will take place only when absolutely necessary.
Baroness Knight of Collingtree: My Lords, at this time of night I will be very brief, but I must use my right of rebuttal to reply to some very serious points. I thank those who have supported me in this debate. I share the respect held for the noble Lord, Lord Walton, in all parts of this House. He said, perfectly correctly, that the medical ethics committee of the BMA had debated the consent exemptions for children and for tissue already in storage and considered them to be reasonable. But I am told in a letter, which arrived only today, that the BMA does not have a policy on the use of tissue.
Lord Walton of Detchant: My Lords, I talked about the GMC, not the BMA.
Baroness Knight of Collingtree: My Lords, if that is the case, I should like to place on record that the view of the BMA has not been established or spoken of. On incapacitated adults, the BMA spokesman said:
“This is a contentious issue on which the BMA has not developed policy”.
We have not heard from the BMA on either of those issues.
I must say to the noble Baroness, Lady Barker, that I find most extraordinary the argument that one should take over the right to do what one wishes with the body of a person said to be incapacitated, otherwise
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