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The chairman of the Joint Committee, Phil Willis, suggested in an interview that autism might be considered a serious medical condition in this context. While I would never wish to minimise the significant difficulties that autism presents, it is not a condition for which the production of a tissue-typed child should be the solution. The inclusion of the phrase, potentially life-threatening, will prevent such applications and help to ensure that future practice does not stray into creating children to treat other relatively minor illnesses. I urge noble Lords to support Amendment No. 30.
Earl Howe: Perhaps I could briefly intervene as the noble and learned Lord referred to my amendments, which follow in a later grouping. I understand why he did so. The reason I felt it appropriate to try to encapsulate in those amendments a definition of serious was the very one alluded to by the noble and learned Lord; that it is a vague term. I was uneasy about leaving it undefined in the Bill. I shall explain later why I framed my amendments in the way that I did.
The reason I am not drawn to the noble and learned Lords amendment is that there has to be some flexibility for the HFEA to decide upon each case on its individual merits. That presupposes an element of subjectivity, which is why I do not apologise for the phraseology I have deployed in my amendment. It is deliberate because Parliament should not be too prescriptive in what it tells the HFEA it should do. There could be meritorious cases which do not quite fall into the category of life-threatening. I felt I should just explain to the House why consideration should be given to my amendments when we come to debate them, even though we are not debating them at this precise moment.
Lord Patten: My Lords, to anyone lying in a bed with a doctor leaning over them saying, You have a life-threatening condition the meaning is entirely clear. We would all appreciate exactly what that meant. Equally, if some doctor leant over any one of us and said, You have a potentially life-threatening condition unless you do X or forestall doing Y, we would all understand that. Yet if a doctor were to say to one, You have a serious condition, that could be interpreted in a great number of ways, meaning giving up a bit of that or doing a bit more of the other, with an unclear end to it. The amendment in the name of the noble and learned Lord, Lord Lloyd of Berwick, has exact clarity, which he quite rightly says that we in this House should always aim for. We should nevermy words, not hislegislate for that which we cannot define. We can clearly define life-threatening; we can also with equal clarity define potentially life-threatening. However, it is extremely hard to define serious in a way that would satisfy all noble Lords.
Lord Winston: My Lords, I am reluctant to detain the House, but as my name has been mentioned perhaps it is appropriate that I just respond briefly to the noble and learned Lord, Lord Lloyd. I spoke on the notion of serious as against life-threatening, with the
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The rabbinical viewone that I shareis that life-threatening includes things which involve the quality of life in some cases. What troubles me particularly about life-threatening is whether we might include conditions where there would be serious mental handicap. In practice, of course, virtually all genetic diseases, with one or two notable exemptions, are serious and life-threatening. Yet there might be a situation in which a serious mental disorderI cannot think of one; perhaps the noble Lord, Lord Walton, canmight be so regarded. That troubles me a little bit about this amendment. Otherwise I do not see a problem, one way or the other.
I am not sure that the noble Lord, Lord Patten, is quite right about clarity. You cannot have complete clarity. As the noble Earl, Lord Howe, says, this is a matter for decision at the time of the clinical involvement. To some extent, we have to make sure that that is done properly, but also in good faith.
Lord Walton of Detchant: My Lords, my noble and learned friend mentioned my name, too. I have not changed my mind. The saving word in this amendment is potentially. It does not indicate that the condition must be life-threatening, but it may be potentially life-threatening. That is sufficient qualification for me to feel able to support this amendment, despite the excellence of the wording of the one tabled by the noble Earl, Lord Howe, to be discussed later.
Lord Alton of Liverpool: My Lords, I, too, raised this in Committee. Bearing in mind what was said earlier, I will certainly not be repetitious. I spoke in the debate last week when the noble Baroness, Lady OCathain, moved her amendment to stop tissue-typing in the first place.
The amendment is a very good attempt to try to place something restrictive in the Bill on what, as the Minister, the noble Lord, Lord Darzi, has himself saidhe did so in a letter that has been sent to some Members of your Lordships' House todayshould only ever be used in some difficult and probably unusual circumstances. This will not be a regular procedure. That is why my noble friend Lord Walton of Detchant, who has particularly applied his mind to this question, is right to tell us that the words would be capable of better interpretation than something more vague.
The noble Lord, Lord Winston, referred to the issue of termination of pregnancy. I remind the House that, in that context, one can cite the example of the use of cleft palates as a ground for abortion up to and even during birth. It has been used. Noble Lords will remember the case of the Reverend Joanna Jepson,
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Lord Jenkin of Roding: My Lords, the noble and learned Lord, Lord Lloyd of Berwick, who moved the amendment, referred to the view that I expressed in Committee, based on the recommendation made by the Joint Committee, having heard evidence from a number of experts. I think that I have changed my mind. Merely to have the word serious is not enough. I listened to the debate in Committee and I have listened to what noble Lords have said on both sides and all parts of the House. We need something more.
My difficulty is that, although one is attracted by the simplicity of the amendment proposed by the noble and learned Lord, Lord LloydI also agree that the word potentially is a very valuable addition to the circumstanceI also have sympathy with Amendment No. 33A, tabled by my noble friend, which goes on to refer to,
I find it very difficult to choose between the two. We have not heard in full my noble friends arguments for his amendment. We have heard a number of speeches that have supported the amendment proposed by the noble and learned Lord.
If I decide not to vote on the amendment proposed by the noble and learned Lord in order to wait to hear the arguments, I feel that we have rather missed the point. I find that a rather difficult decision. They seem to stand as alternatives; they cannot stand together. I suppose that we could reach the position where there was uncertainty as a result of decisions on Report. That may give us sufficient grounds to have a clarifying amendment on Third Reading. I know that the House authorities are very restrictive on what one may table on Third Reading, but that seems possible.
I say this with some diffidence, without having heard my noble friend's argument in full, but I am very tempted to vote for the noble and learned Lords amendment because it is an improvement on what is in the Bill. As the noble Lord, Lord Alton, said it includes the important word potentially before the words life-threatening, and it meets many of the points made to the Joint Committee, to which I referred in Committee debates. On balance, for the moment, although I will listen to the arguments made in the rest of the debate, I feel inclined to support the noble and learned Lord.
Lord Harries of Pentregarth: My Lords, I share some of the confusion about process expressed by the noble Lord, Lord Jenkin. I should like to hear what the procedure will be if the amendment in the name of the noble and learned Lord is passed. Does that mean that the amendment in the name of the noble Earl will fall? What happens if both are passed?
Lord Mackay of Clashfern: My Lords, it is worth pointing out that the amendment tabled by the noble and learned Lord, Lord Lloyd of Berwick, does not delete serious; it only adds and potentially life-threatening. In view of his explanation, I doubt whether there is anything potentially life-threatening that is not also serious. Anyway, he has not taken out serious and the result is that amendment of the noble Earl, Lord Howe, which explains the meaning of serious, can be adhered to by the House. If the amendment of the noble and learned Lord, Lord Lloyd, is passed, it does not rule out the amendment of noble Earl, Lord Howe, when it is voted on.
Lord Turnberg: My Lords, I can understand why the noble and learned Lord, Lord Lloyd of Berwick, has introduced the amendment. However, is it possible to think of conditions that are serious, but not life-threatening, which one would want people to carry on with? There are conditions that are serious but are not necessarily life-threatening. If a child has a cleft palate, very few people would regard that as sufficiently serious or life-threatening; it is possible to have that as part of a syndrome in which the child is badly deformed, deaf and has all sorts of associated anomalies, yet that serious condition is not normally life-threatening. I am not sure the amendment is quite right.
Baroness Royall of Blaisdon: My Lords, I am grateful to the noble and learned Lord, Lord Mackay, for explaining in procedural terms the implications of the amendment. He is correct to say that, should the amendment be passed, we would move forward, discuss, debate and possibly vote on the amendment tabled by the noble Earl because serious is retained.
Testing for the purpose of determining tissue type can be done only when the sibling suffered from a serious medical condition that could be treated with umbilical cord blood stem cells, bone marrow or other tissue of any resulting child. A government amendment to be discussed shortly will limit that to exclude whole organs. This amendment introduces and potentially life-threatening after serious and would mean that embryo testing could be carried out only if the serious condition that the sibling suffered from was also potentially life-threatening. Therefore, this amendment introduces a higher test, as noble Lords have acknowledged. That higher test would mean that the HFEA would not be able to license treatment of a condition that had a significant impact on the life of the sufferer and which was serious but not necessarily potentially life-threatening. It is expected that most conditions for which tissue typing would be licensed for would be life-threatening, very serious conditionsand all the handful of cases licensed for that purpose to date are so.
These decisions are not entered into lightly, either by the parent or by the regulatory authority. The licensing decisions made have involved very serious blood conditions and have been undertaken as a last resort. The HFEA has licensed tissue typing for three conditions: aplastic anaemia, Diamond Blackfan anaemia and beta thalassemia. These conditions can be treated with the use of bone marrow or cord blood from an appropriate donor. In most cases this would be either
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I note the important points made by the noble and learned Lord, Lord Lloyd of Berwick, and others. As many have acknowledged, we originally proposed, when the Bill was published in draft, to restrict these decisions explicitly to life-threatening cases. That draft Bill was amended following scrutiny by a Joint Committee. One change made to the Bill on the recommendation of the committee was that the wording in relation to tissue typing should be amended so that the term life-threatening was replaced by serious. We have heard views today and in Committee that it would be more appropriate if this were limited to life-threatening or potentially life-threatening conditions, and we acknowledge those views. As I promised in Committee, I have reflected on this and discussed it with both colleagues and officials, but I am of the view that by retaining the word serious, we will allow for any such conditions that in the future could be identified as potentially treatable by cells from a tissue match donor.
In addition, by retaining serious, we will ensure that the legislation is as future-proof as possible. The HFEA will consider every condition for which tissue typing is proposed and will provide guidance on this in its code of practice. Taking these factors into account, and to ensure that the Bill is as future proof as possible, we intend to keep the wording as it is in the Bill, and I invite the noble and learned Lord to withdraw his amendment.
Baroness Royall of Blaisdon: My Lords, as the noble Earl pointed out earlier in his intervention, we believe that there should be some flexibility for the HFEA to decide. Further, there may be some conditions of which we are not aware at the moment, although science is moving on apace. That is how I define future proof.
Lord Lloyd of Berwick: My Lords, I am grateful to the Minister for her reply to this amendment, but regret that I am not satisfied with the argument that the word serious on its own, without the addition of some reference to a threat to life, is adequate. In my view it is still much too broad.
As regards the amendment of the noble Earl, Lord Howe, while I understand entirely his desire to include quality of life, I have to say that he has not yet persuaded mehe might do sothat it is sufficiently precise to be put in an Act of Parliament. And in response to those who have a problem about which amendment to support, I suggest that, not for the first time, the noble and learned Lord, Lord Mackay, has produced the solution. Strictly speaking, if this amendment is passed it will be possible for the noble Earl, Lord Howe, to move his amendment because the word serious would still remain in the definition. It may require some tidying up, but that could be done on Third Reading.
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