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I see the noble Lord smiling, so let me give an example. One genetic disease that could be classed as serious but is certainly not life-threatening is colour blindness. I think most of your Lordships would agree that it would be rather unjustified under the purposes of the Bill to screen an embryo for colour blindness, but it might be a serious condition under this vague definition. It is certainly not life-threatening.
Lord Jenkin of Roding: The noble Lord knows far more about this than I do, but, with the greatest respect, he has taken rather a strange example. I would not for one moment have regarded colour blindness as a serious illness. It may damage the person’s enjoyment of life in a number of ways, but it is not serious. I hear what he says and I will listen to any future argument on this, but I thought that we were justified in widening the definition. I think that we saw the definition of “life-threatening” illness as much narrower than the slightly broader definition of “serious” illness. That was the weight of the evidence from the two witnesses whose names I have mentioned.
Lord Mackay of Clashfern: It is always difficult to know exactly what one thought earlier in our consideration of these things. I felt, as I think the Committee as a
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If “or other tissue” means more than umbilical cord blood stem cells and bone marrow and is an additional phrase, the paragraph will, in effect, amend the Human Tissue Act by giving a power which, until the Bill comes along, will not exist in respect of a saviour sibling. If that is correct, the House authorities may want to reconsider whether the Human Tissue Act is brought into this Bill sufficiently to enable my noble friend Lord Jenkin of Roding and the Joint Committee as a whole to succeed in their wish to have that Act seriously amended, to deal with the difficulties that the Royal College of Pathologists has identified in its working. If that is right, this may be a way of handling it. This thought occurred to me in the course of the discussion.
We, or certainly I, felt that allowing a testing for the purpose of seeing whether an embryo might be beneficial to another member of the family—I suppose the purpose of such a test is to select an embryo—was something the authority should have the power to license.
Baroness Royall of Blaisdon: The screening and selection of embryos for the purpose of providing stem cells to treat a seriously ill child—so-called saviour siblings—is one of the most emotive issues in this controversial field, as we have learnt today. At the outset I should say to the noble Lord, Lord Alton, that I was deeply disturbed, as I am sure were other noble Lords, to hear the views expressed in the New Scientist in relation to saviour siblings and organ donations.
The HFEA currently licenses on a case-by-case basis the screening of embryos where the intention is that the resulting baby’s umbilical cord stem cells or bone marrow stem cells will be used to treat an existing sibling who has a life-threatening or serious illness. The Bill clarifies the scope of the HFEA to make such decisions. As the noble and right reverend Lord, Lord Harries, and the noble Baroness, Lady Deech, informed us, these discussions are not made in a moral vacuum.
Amendment No. 32 specifically removes the tissue- typing purpose so that it would not be possible to license embryo testing to find out the tissue type of an
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In contrast, the benefits offered by tissue typing are considerable. The Bill allows potentially life-saving treatments to be offered for children who are affected by serious medical conditions. In practice, tissue typing is only ever considered when all other options are exhausted—in other words, when there are no match donors on the register or within the family. The HFEA has licensed tissue typing for three conditions. If we were to accept the amendment we would be taking a backward step. As the noble Earl said, we are not aware of any specific risk as a result of embryo biopsy, particularly when balanced against the benefit of treating serious medical conditions. For the sake of children where this treatment is their only hope, we do not think the amendment is appropriate.
Amendment No. 32A was tabled by the noble Lord, Lord Alton. The Bill states that the sibling must suffer from a “serious” condition; the amendment seeks to change this to “life-threatening”. The result would be that, to license embryo testing to discover tissue type, the HFEA would have to be satisfied that the condition to be treated in the sibling was life-threatening. As we have heard, the pre-legislative scrutiny committee recommended that the Bill should not limit to “life-threatening” those conditions that could be licensed by the HFEA, but should also include “serious” conditions. This word was inserted in the Bill—and, indeed, replaced “life-threatening” in the draft Bill—at the recommendation of the pre-legislative scrutiny committee. I am grateful to the noble Lord, Lord Jenkin, for explaining why the committee made its recommendation, as did the noble and learned Lord, Lord Mackay.
I hear the views expressed by the noble and learned Lord, Lord Lloyd of Berwick, and the noble Lord, Lord Winston. This is clearly a matter that we should explore further—I do not know whether in discussions before Report or on Report.
Amendment No. 33, tabled by the noble Lord, Lord Alton, seeks to add “effectively” to the tissue-typing provision. The result would be that it would only be possible to carry out embryo testing for the purpose of creating an embryo from which cells could be used in the treatment of a sick sibling if the treatment were effective. From a legal perspective, inserting “effectively” introduces uncertainty. As with many medical treatments, there is no guarantee that it will work. Also, what would effective treatment mean? Would it only mean where the child would be permanently cured of the condition? What if the treatment could extend the life of a sick child for a year or two, or 10? We are content that the Bill does not allow the creation of embryos where there is no chance that a treatment could be offered to a sick sibling, and that this is sufficient.
Amendments Nos. 34 and 35 would limit the circumstances when embryo testing for tissue typing could be carried out—to allow it only when the older
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The Human Tissue Authority oversees transplants of bone marrow for children. Along with an independent assessor, it would have to be satisfied that the child’s best interests had been properly considered and that the its codes of practice had been properly implemented. The Government decided on balance that the creation of embryos where the intention was to collect bone marrow for the treatment of a sick sibling was appropriate, subject to these safeguards. Concerns have been expressed about the donation of organs such as kidneys by children born following treatment. Although strictly speaking it could be possible under the provision to test an embryo for this purpose, it is not in any way the intention behind including the words “or other tissue”. I shall return to this issue shortly.
The role of the HFEA in regulating tissue typing is limited to the creation and testing of an embryo. However, there are further regulatory controls imposed by the Human Tissue Authority, which must approve such transplants. The HTA’s code of practice advises that before the removal of a solid organ from a child it is good practice for court approval to be obtained, as the noble Baroness, Lady Deech, explained. In practice, since the HTA took on responsibility for approving organ donations from children in September 2006, it has yet to approve a single case.
The Bill has no impact on the Human Tissue Act or the powers of the Human Tissue Authority. It addresses the grounds on which embryos can be selected, not the subsequent controls on interventions on the child that result. I note what the noble and learned Lord, Lord Mackay, said earlier about the scope of the Bill. We are content that, for the moment, amendments relating to the Human Tissue Authority are outwith the Bill. However, he and others may wish to seek clarification from the House authorities. If we accepted these amendments, the HFEA would not be able to license embryo testing where the intention was to use cells of the umbilical cord or other non-invasively obtained tissue that could be used in the treatment of a sick child.
Amendment No. 35 seeks to introduce the possibility of tissue typing being carried out where the intention is to use this tissue to treat a parent. To date, the HFEA has undertaken a fine balancing act in making these assessments when deciding whether to license embryo screening and selection to create a saviour sibling. I am not convinced that enabling a parent to create a child for the purpose of providing the parent with treatment for a life-threatening condition maintains that delicate balance.
The Bill introduces a regulation-making power to amend the purposes for which embryo testing can be carried out. Amendment No. 39 would restrict that power so that it could not be used in relation to tissue typing except to restrict the circumstances for which it could be carried out. As the regulation-making power is subject to the affirmative procedure, both Houses of
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Amendment No. 40 inserts a new paragraph that requires the authority to be satisfied, before licensing tissue typing, that other sources of tissue or therapy available have been thoroughly considered and rejected on reasonable medical grounds. People would not choose to do this if there was another option, as the right reverend Prelate explained. The process involves IVF to create the embryos for testing. Assuming an embryo had the correct tissue type, there is still a significant chance that that embryo would not result in a pregnancy. Although people seeking to use IVF for the purpose of creating a saviour sibling would not necessarily be infertile, the chance of pregnancy is still only likely to be around the 30 per cent mark.
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The HFEA produces guidance in the form of a code of practice. For tissue typing, it includes a list of factors to consider, including the availability of alternative sources of tissue or therapy, now and in the future. The authority already takes into account the factors proposed by the amendment. Because of the HFEA’s guidance and the fact that it is extremely unlikely that someone would choose to create a saviour sibling where there was any other option, we think that the provision provided by the amendment is unnecessary.
Amendment No. 41 would prohibit the use of bone marrow and organs from a saviour sibling and make an offence of removing organs from a child born following tissue typing. With the regulatory protection and the very remote chance of people creating embryos for the purpose of removing organs, and to allow flexibility for the future, we do not consider the amendment to be necessary. It would also prohibit the use of bone marrow, which would not be desirable because that would prevent children being able to be treated with bone marrow cells when their life could be saved by such treatment, which generally causes no lasting harm to the donors.
The noble Lord, Lord Alton, asked what assessment had been made of the psychological impact of being a tissue-type child. In its code of practice the HFEA requires consideration of the long-term emotional and psychological implications for any child who may be born. I will write further to the noble Lord.
I acknowledge and understand the concerns that have been raised about the use of embryo-testing technology for the purposes of creating saviour siblings. The Bill allows the treatment of sick children where there really are no alternatives. We think, on balance, that this is appropriate for the majority of the discussions we have had today about bone marrow. However, I have listened carefully to all the concerns raised about the potential for the removal of organs. I feel rather uneasy about that, and I am certainly prepared to take that specific issue back and consider it further. There are perhaps other ways of expressing these issues; for example, “regenerative” may be the way forward. I am
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Earl Howe: I am grateful to the Minister for the offer she has made to reconsider that issue. If she is right that the Bill does not allow scope for the House to amend the Human Tissue Act or the functions of the Human Tissue Authority, why is there on page 101 an amendment to the Human Tissue Act where the remit of the authority is modified?
Baroness Royall of Blaisdon: That is a very good question.
Baroness Royall of Blaisdon: We have been advised by the House authorities that the Human Tissue Act is outwith the Bill. I will look into this further and come back to your Lordships with clarification from the House authorities.
Lord Alton of Liverpool: The Minister has done real justice to this. Along with the noble Earl, I welcome her assurance that she will look again at the issue of organs and that she will be willing to discuss some of the other anxieties and concerns that Members from all parts of your Lordships’ House have raised in Committee today.
The noble Lord, Lord Jenkin of Roding, was right when he said that after scrutiny has taken place and the Joint Committees have had their deliberations, of course people in this House can change their mind on Report as they come to see in the full light of day precisely what we are being required to do. Those who sometimes talk about moving to a unicameral legislature, and would like to see the abolition of your Lordships’ House, ought to see the record of yesterday’s and today’s parliamentary debates to see the quality of the contributions from all sides of this argument. I welcome every contribution that has been made today. This debate more than justifies the existence of this House.
I reassure the Minister that the article from New Scientist was meant to be cryptic. It was actually pointed at the provisions we are allowing for in the Bill, rather than advocating them.
Two issues have been raised during the debate. The first is the question of “serious” rather than “life-threatening”. The noble and learned Lords, Lord Lloyd of Berwick and Lord Mackay of Clashfern, have two of the finest legal minds in the country and I hope that between now and Report they will have the chance to give further consideration to this. It may well be that provisions around the wardships of court, which have previously prevailed, should apply in all circumstances. Maybe that is the route we will have to go, rather than looking at whether we use “serious” or “life-threatening”. We should consider other options for dealing with these questions when they arise.
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None of us wants this to become routine—that seemed to be a theme that united us. The right reverend Prelate the Bishop of Winchester said we should not go towards a society that becomes deliberately instrumentalised. I agree entirely.
The noble Baroness, Lady Tonge, raised the issue of “serious” and wondered what the problem was for people like me in the interpretation of that word. During my opening remarks I tried to allude to one instance that is a good parallel here. She will know the case of the Reverend Joanna Jepson, a young woman who challenged the Lords because, on reading the statistics for late abortions, she discovered that cleft palate, club foot, hare-lip, webbed fingers and webbed feet were being included in the “serious” category for abortion of a child. Clearly none of those by itself is a life-threatening disease. That is an issue my noble friend Lady Masham raised at Second Reading. It goes to the heart of how we interpret things. Therefore, we have to be careful before we change a phrase, such as from “life-threatening” to “serious”, that sends a signal, intentionally or not, that somehow we want to lower the threshold of the requirement.
The other issue that has been raised is whether other tissues should be included in the scope of the Bill. I refer to some comments by Dr Simon Fishel, a senior IVF expert and an inspector, peer reviewer and external adviser for the HFEA who has already created saviour siblings to obtain umbilical cord blood, and who is the managing director of CARE Fertility Group, the United Kingdom’s largest independent provider of assisted conceptions. He welcomed the new legislation and predicted, in an article entitled “Secret ruling on ‘designer babies’” by Mark Henderson in the Times, that saviour siblings would be used in future to provide organs such as kidneys to treat existing children.
There are therefore IVF experts who would take into consideration the effect on the planned child, as specified in the seventh code of practice, and would consider it a good idea to create a child to be a kidney donor. I do not believe that is the intention of the Committee, and I hope we will be able to make progress between now and Report in dealing with that matter.
I am grateful to everyone who has contributed to the debate today. We have covered some very controversial, difficult and profoundly testing issues. In the spirit of the answer the Minister has given, I am more than content to withdraw the amendment at this stage and hope it will not be necessary to test the opinion of the House on Report. I beg leave to withdraw the amendment.
Amendment, by leave, withdrawn.
[Amendments Nos. 32A to 48 not moved.]
Baroness Morgan of Drefelin: I beg to move that the House do now resume.
Moved accordingly, and, on Question, Motion agreed to.
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Agriculture and Horticulture Development Board Order 2007
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Lord Davies of Oldham rose to move, That the draft order laid before the House on 13 November be approved.
The noble Lord said: My Lords, the Agriculture and Horticulture Development Board Order 2007 is made under the Natural Environment and Rural Communities Act 2006. It abolishes the existing five levy boards from 1 April 2008 and replaces them with a new board, the Agriculture and Horticulture Development Board. The order also provides for the establishment of subsidiary companies for each sector. It is intended that companies will be created for six sectors: beef and lamb, cereals and oilseeds, horticulture, milk, pigs, and potatoes. The scope of the new board will be same as the scope of the existing boards, with the exception of the red meat sector, where separate arrangements are being introduced in Scotland and Wales.
Restructuring will improve accountability to levy payers, with the sectoral companies having boards made up mainly of levy payers. It will also improve the efficiency of the levy arrangements by providing more scope for co-operation and collaboration across the sectors. The shadow board has already proposed to locate all the boards and companies on one site, at Stoneleigh, with an estimated efficiency saving of £12.7 million over five years.
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