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Lord Roberts of Llandudno: My Lords, as all other speakers when they first address this House must say, I appreciate very much the warmth of welcome and the kindness of Members on every side. It has meant so much to me and to the other noble Lords who will be speaking for the first time this afternoon. I thank the staff for their helpfulness and efficiency; they give such tremendous support. Thank youit is beyond all expectation.
I come here as one with a great measure of nervousness. I am sure that I am not the only maiden speaker to refer to that. I have already made many mistakes: I have stood when I should have sat down; I have crossed where I should not have crossed; and I have brought guests into places where they should not have been. I have not, as yet, whispered "Content" when everyone else says "Not Content", but that might happen. I ask, as everyone else does, for the forgiveness and indulgence of the House. Noble Lords will know that no offence is ever meant.
I come from a beautiful part of Wales; the Conwy Valley. That seems to be quite a breeding ground for life Peers. I rather think that we have more life Peers to the square mile than any other part of rural Britain. At the top of the Conwy valley there is the Gwydyr forest area and Gwydyr castle. Of course, the noble Lord, Lord Thomas, represents that area. Then there is the whole swathe of the valley, and the noble Lord, Lord Elis-Thomas, represents it. Then you come the historic town of Conwy, and the noble Lord, Lord Roberts of Conwy, represents that, and that is where my heart is really. The castle in Conwy was named by John Wesley as the noblest ruin in the whole of Europe. The historic is represented, and now I venture to speak for the premier seaside resort in Wales: Llandudno. I will argue perhaps some other time if noble Lords are not in agreement with that.
It is not only my little patch of Wales. You can look further afield; you can go to Dwyfor in the old south Carmarthenshire, where the greatest of us all, Lloyd-George, or Earl Lloyd-George of Dwyfor, came from. He was nominated to this House in 1945, but did not live long enough to take his seat. That is Lloyd-George country. I am reminded that he was the great advocate of more power for Wales, and a
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stronger devolution. We will discuss that later when the Richard commission brings its report, as it has already to the Welsh Assembly. I am in a distinguished lineage of all those people.
Not far from Wales, you can cross over to Merseyside and Liverpool. That is where so many Welsh people earned their living and some went on to make their fortunes. Welsh people depended so much on Liverpool over the years, especially the hospitals and medical services of Liverpool. That is where the name Alder Hey comes in. It has already been mentioned, and it will be mentioned many times again. I have in my hand a summary of the report of the children's inquiry there. Liverpool had that tremendous hospital on Merseyside that has done so much for the young people and children of Wales. That time came, that blip, when we discovered that between 1948 and 1995 children's remains had been retained without parental consent. There were hearts, body parts, eye tissues, brains. On 30 January 2001, the report was published, and it makes very disturbing reading indeed.
I was involved with one family, and had taken the funeral service of their three-week old baby in 1980. In 2001, on his 21st birthday, we had a second funeral for those parts of his body that had not been accounted for the first time. There was trauma and shock, and total confusion. Others did not only have two funerals; I know of a little child who had three funerals. Some families do not cope with that. I know one or two families who have not been able to continue as they were before as a family unit. There was an inquiry, and 402 sets of parents replied. They complained to us. I hope that the Minister will see this when the Bill finally passes through this House. They said that they wanted more information about the illnesses, the threat and the death of their children. There must be communication.
Moreover, where consent was obtained, some parents complained of undue pressure to sign consent forms. Parents would also like to know to what purpose the organs of their children were used. Finally, they would like to be communicated with in non-medical language so that they will understand the situation and what has happened. We have all those questions to consider.
For children, the question of consent is with their parents. Adults give their own consent. This is National Transplant Week and it has not had much impact. There needs to be greater publicity and information before people will realise the demand: there is a target that by 2010 there will be 16 million potential donors on the register. But how will that be achieved? I am concerned that people know that they can respond and can consent. In consenting voluntarily, a person does more than just say, "My life might be of benefit to somebody else". He or she also says, "By doing this, I can also play another part in society and in community".
I ask that we support this measure and discuss it further. Later, there will be time to dot the "i"s and cross the "t"s. But today it is a great pleasure to support this Bill.
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Lord Winston: My Lords, it is a great pleasure to speak after the noble Lord, Lord Roberts of Llandudno. He made a wonderful, compassionate, elegant and humorous maiden speech, to which the House listened with great pleasure and delight. We know that we will hear much more common sense and good advice from the noble Lord in the future.
I have to tell the noble Lord that my experience of Llandudno was not quite the same as his. He of course has a wonderful reputation in the Methodist community and his works in public causes, such as for the blind, are well known, which is a marvellous addition to this House. My experience in Llandudno was on a Friday evening after "Any Questions". As an orthodox Jew, I could not leave until after dark on the Saturday evening, which was quite difficult for me.
I should also tell him that there are other rules that he almost broached during his speech. In brandishing anything in this Chambereven a documentI believe that one can be called to order, which I found out to my cost in my first week here. I picked up my mobile telephone and offered it to a Member of the House on the other side. I was immediately admonished by not only my Front Bench but also the Front Bench opposite.
It is wonderful that the noble Lord had the good sense to take his oath in fluent Welsh. But I understand that he practised a little beforehand. I did not have the courage to do mine in classical Hebrew. But that would not have been allowed in this House either: Welsh is.
This is a curious Bill, with which I have great problems. Of course, everyone will agree that it has been brought with the greatest of good intentions. I have no doubt that everyone in the House feels strongly that the relatives of people who have lost dear ones need to be protected in the way that other Members have already said. I agree with that.
There seems to be a very major distinction between the tissues and organs of dead people derived at post-mortem and the tissues of people who are living. Like my noble friend Lord Turnberg, I agree that much of the legislation in that respect is unnecessary. I feel very sorry for my noble friend the Minister who has done an outstanding job listening to our concerns. Without him, this Bill would have been a good deal more provocative.
The truth is that this Bill has required a huge amount of change and a vast amount of improvement. Much time has been spent on it in the Department of Health. I believe that initially the drafting was astonishingly faulty. It is extraordinary that the Royal Colleges, the Academy of Medical Sciences, the Royal Society, the Royal College of Pathologists, numerous research and development organisations and every medical school in the NHS have been so agonised by this Bill when the drafting in the initial stages could have been much more focused on the real need.
The truth is that much of the Bill represents a considerable overreaction. Although the Minister will tell us that the medical profession is broadly in line and
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very happy now with the redrafting, my view is that privately it is not true. Most professionals are deeply disturbed by the Bill. They are very concerned about the impact on research, training and teaching.
There are a number of issues where the Bill is clearly deficient that will no doubt be brought up in detail in Committee. We have already mentioned DNA, but there is no mention, for example, of chromosome analysis. A key area in which I am involved is the Medical Research Council's foetal tissue bank. There is no mention of foetal tissue in the Bill. Yet that is a very important resource for medical research. And who gives consent for that? Clearly, it cannot be the foetus. Is it the mother? But we may want to look at the chromosomes of the father, if there is a translocation, in order to trace genetics in that way, either in an anonymised fashion or however is appropriate. That is the kind of problem that is being missed.
Would we be allowed to use photographs of tissue that had been derived for teaching purposes? That is very serious. I learnt a great deal of my pathology from photographs of slides. But if photographs are going to be used, why not use the slides and review different areas of the histology and cytology?
There is also the curious issue of ancient remains. I mention this as someone heavily involved in the development of the National History Museum. While I doubt that we would want to give back Australopithecus afarensisLucyto Hadar in Ethiopia, we might be persuaded that it is necessary with other more recent remains from Cro-Magnon man. Or would we? Where does one draw the line in the modern museum and those sorts of resources?
Whether we like it or not, the truth is that we are living, to my mind and in many people's perceptions, in a society that is increasingly over-regulated and where we are often at the risk of losing trust and common sense in legislation. That is a real problem and is absolutely true of the health service. It is a matter of deep concern that patients do not trust us as much as they should. That is not because of human tissue researchI do not think that Alder Hey has left a deep scar on my patients. Rather the confusion around the MMR vaccine, concerns about CJD and worries about oral contraceptives are far more important. People are more worried about political statements and about those scientists who advise government. There is a deep mistrust of politicians rather than a mistrust of the medical profession. As every review reports, scientists and doctors are much more trusted than politicians. Noble Lords ought to bear that in mind when we consider these matters and seek to put them in some kind of focus.
In the modern health service we are rightly forced to look at evidence-based medicine. That is what we must both act on and react to. I am afraid that what is happening with legislation of this kind is that we are no longer looking at the evidence, but at the reactions of certain groupspressure groups, focus groups and some people who are deeply disturbed. What we have not done, again and again, is conduct proper social science in the form of peer review research to look at
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the real impact of these problems in our society. I think that that is something the Government should commission before introducing Bills of this kind.
For example, I think it is very unwise to introduce an order on the anonymity of donors, as we did the other day, without first having carried out proper social science research to assess exactly what will be the impact on that group. I say that because we might be doing grave damage to all sorts of people who really should not have to face such dangers in the future.
What is curious here is the sudden revelation made by the Government that, in the future, the Human Tissue Authority is going to be linked in some way with the Human Fertilisation and Embryology Authority. A year ago I would not have dreamt of wanting to revisit the legislation so ably introduced in 1990 by the government of the day. It was a spectacular Act of Parliament and at the time one that was deeply protective of an important branch of medicine. But it is now clear that the legislation might well need to be revisited since so much has changed.
What we can see is very clear. I have no wish to damage the Human Fertilisation and Embryology Authority, but to be frank, it is an incredibly bureaucratic body. It is very expensive to run. It has cost health service departments and other departments large sums of money. For example, my own unit spends money on at least two salaries in order simply to send our returns and statistics to the Human Fertilisation and Embryology Authority which, in the past, it appears that the authority has lost or misused so that we have not been able even to retrace the figures. We have not been able to get the kind of statistics we need for simple research.
Sometimes the authority makes what people feel are quite arbitrary decisions about different ethical issues, but that is a matter for another debate. Moreover, it has what is clearly a very flawed inspection process. Inspections are carried out by people from other units who obviously have a vested interest rather than by those who are independent of the authority.
Above alland this is my pointlet us look at British standing in embryological research. We invented in vitro fertilisation. Embryology in this country led the world. Looking at the research record today, it is clear that that research has been greatly inhibited rather than stimulated. Patients need such research, and it is that which worries me about the Bill now before the House. In that respect, it causes me deep concern.
Some 35 years ago, while waiting to take up a substantive appointment, I was asked by my then boss to do some research on the organism trichomonas vaginalis, a common organism thought to be sexually transmitted in some people. In order to carry out the research I had to review the cervical smears of a large number of women. Around 3,000 cervical smears were reviewed, which was possible because I was regarded as a suitable person as a result of my experience with microscopy. I noticed certain cellular changes in the cervical cells of some of the women, but no changes in others. In order to make sense of this finding, I had to
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retrace the records of the patients and check at what time they had attended and to find out how long they had had symptoms. The women whose notes indicated symptoms and those who were symptom free fell into two different cohorts.
After a while it was clear that the organism I was looking at took various forms, some of which were large-celled and others with small cells. I do not want to make a long story of this, but that research led eventually to an understanding of the way in which viruses and other organisms can affect the early development of cancer of the cervix. Indeed, that was one of the first observations of its kind. That paper, of all the papers I have produced in my career, received the highest number of recalls for reprint, well over 1,000 from all over the world. I was an unknown research worker, but that paper launched my career. However, I think that it would have been completely impossible to produce in today's climate, even though no one was in any way damaged by that research; indeed, it led only to gain.
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