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Lord Hughes of Woodside: My Lords, it is a real pleasure to follow the noble Baroness, Lady Murphy, who has just made an excellent maiden speech, not least because she is a noted campaigner for the health of older people, which is of special reference to some of us in your Lordships' House. Her expertise has been as a doctor, an academic and a manager, and she is currently chairman of the North East London Strategic Health Authority. That expertise was well demonstrated today in her maiden speech. There is no doubt that her presence in your Lordships' House will greatly enhance the House's reputation, and we all look forward in great anticipation of hearing from her again in future.
I join in the general welcome that the Bill has received, although in passing I must say that I am surprised or astonished at the regular and sustained criticism from almost every research academic who spoke in the debate. But perhaps one should not be surprised at that. There is no doubt that it has been necessary to bring this Bill forward, but we need to remind ourselves that it is deeply disturbing that it was necessary to do so.
We are faced with examples of a tiny minority of the medical profession, who had become so desensitized to human life and experience that they collected vast amounts of organs and tissue which could never possibly be put to any use. They were presented to the general public as if they were some collection of macabre memorabilia. That did huge damage to the medical profession; how far the damage has been done and has affected people's confidence in organ transplantation, for example, is a matter for speculation. Fortunately, the evidence so far seems to suggest that the effect has not been as bad as it might have been.
I confine my remarks today to a topic that has not so far been discussedthe question of organ transplantation, and the vexed question of whether we should maintain the present system of opting in, or move to what we used to call opting out. I am not sure that it could be described as spin, but the phrase "opting out" has now been changed to "presumed consent"which certainly sounds a lot better than opting out.
I strongly believe in presumed consent and have done so for many yearsindeed, since 1970, when I was the co-sponsor with Tam Dalyell in the House of Commons of a 10-minute rule Bill on the subject. At that time, there was unrelenting hostility to the possibility of moving towards presumed consent. That Bill did not proceed any further and, since then, there have been many other attempts to further the law in
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that regard, which, again, foundered for one reason or another. But it is my opinion that the tide of opinion is changing; people are much more open now about expressing their support for presumed consent.
On 19 November 1970, I took part in a debate on organ transplantationduring which, incidentally, I made my maiden speech. Looking back, comparatively little has changed in almost seven years. It may beand this is my own opinionthat people such as the British Medical Association have now come out much more strongly in favour of presumed consent. Many organisations, such as the National Kidney Research Foundation and others, have also said that they are in favour of presumed consent. So the tide is turning.
The odd thing is that there has been very little change in statistics. The waiting list for the number of people for kidney transplants has hardly changed. In 1997, the figure was 5,500; currently it stands at 5,750; but what is incontrovertible is that the shortage of organs for transplant still exists, and the gap has not shrunk in any way. Very ominously, it is forecast that the rate of kidney failure will increase significantly in the next 15 years. Therefore, if for no other reason, I regret that the Government have not taken the opportunity to move in that regard, and rejected the amendment in favour of presumed consent when it was moved in the House of Commons.
I believe that the Government's reasons for not doing so are twofold, and I understand them both. First, they argue that there is no evidence that presumed consent will increase the availability of organs. Secondly, and perhaps more importantly, the Government say that the Bill is about consent. I accept that. Given that the Bill's intention is to try to restore the confidence of the general public in the medical profession, I think that it is a step too far for the Government to move from one part of the Bill that emphasises the importance of consent to a different part of the Bill in which we presume consent.
However, I believe that there is strong evidence that, where presumed consent is available, organ availability is better than it is in the UK; and I understand that the Bill refers to England and Wales. In another place, Dr Harris, who moved the amendment, among other things, said:
"The average donation rate, in donors per million of population, is 25 per cent. higher in countries with opt-out than in countries that have an opt-in system".[Official Report, Commons, 28/6/04; col. 50]
That is backed up by scientific analysis and research. He went on to mention an interesting case involving two different centres in Belgium, where the law had been changed. One centre operated on the basis of opting in and the other on the basis of opting out. There was a considerable increase in the number of organs available in the opting-out centre. This is not simply an academic exercise; we are dealing with people's lives.
On the second issue, as I have already conceded, it is incongruous and perhaps even contradictory to have a Bill that provides absolute consent in so many areas but presumed consent in another. However, my experience is such that I believe that that ought to be done.
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There has been some criticism of the fact that the Government applied a three-line Whip in the House of Commons whereas other parties operated a free vote. In the context of this Bill, however, it was legitimate to do that. The House of Commons is actually not very good when it comes to free votes. Sixty MPs voted for the amendment for presumed consent and, even more interestingly, 250 MPs did not vote at all. I have not had the opportunity to go through the names of those who voted against presumed consent to find out which party they belonged to. Quite clearly, however, a considerable number of Memberssome Liberal Democrat, some Conservatives and some of no partyvoted against presumed consent. The figures probably show that there is still a balance in the Commons and that no one has yet made up their mind. So I am not too concerned about the issue of a three-line Whip.
It is an incontrovertible fact that things cannot be allowed to drift. I have been engaged in this discussion for more than 30 years, but it has gone on for longer than that. In the mean time, people are dying or experiencing a much less good quality of life because of the lack of organs for transplant. We have to do something about it.
In the House of Commons, Frank Dobson, the former Secretary of State for Health, said that he had always voted against presumed consent. Indeed, he did so in the Commons on the last occasion. He suggested that perhaps there ought to be a Green Paper to revisit the issue of the best way to do this. I am never quite sure about Green Papers. They sometimes remind me of the story of the late Harold WilsonLord Wilsonwho said, referring to Royal Commissions, that they took minutes and lasted for years. I would not want to bring in a system that meant we were doing something simply for the sake of it and fobbing off the argument for some time. We need urgent action. We urgently need to look at this.
Perhaps the Government could set up a special panel to take advice and try to gauge public opinion. The onus is on the Government to see whether we can move forward. I know that they will have a big campaign to try to encourage voluntary organ donation and so on. We have reached the point at which we must take decisive action and remember those who really matter in all this; that is, the patients. Having said that, I commend the Bill to the House.
Lord Oxburgh: My Lords, I declare an interest at the outset as a former member of the Hammersmith Hospitals NHS Trust and in my former capacity as what I shall describe, since this is a medical debate, as the midwife to the birth of one of the largest and most successful medical schools in the country; namely, the Imperial College School of Medicine, of which the noble Lord, Lord Winston, is a distinguished member.
One might well imagine that at this stage of the debate there would be little more to say, and one would be right. We have heard three outstanding maiden speeches from the Liberal Democrat Benches and our
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Benches. I endorse the compliments that have been forthcoming from every side of the House. The House can retire for the Recess in the certain knowledge that many more such splendid contributions can be expected in years to come.
There has been general agreement that this is a very much better Bill now than when it started, and we are grateful to the Government for that. However, we are equally agreed that there is room for further improvement. I seek to make no excuse for what happened at Alder Hey and Bristol. People were caused needless and inexcusable levels of distress. However, it is a well known adage that hard cases make bad law. These are undeniably bad cases but we must all strive, as the noble Lord, Lord Jenkin, and my noble friend Lord Walton and others have pointed out, to ensure that these cases do not make bad law. That is a danger. The Bill appears to be light in coherent and thoughtful elucidation of principle and heavy on detailedand often ambiguous and unhelpfulregulation.
I shall take a rather broader view. Good health is probably the most important element in what we recognise as quality of life. In pursuit of that, I am sure that there is not one Member of your Lordships' House who has not had occasion to consult a medical doctor. I suspect that the same is true of virtually everyone in the country. I wonder how many of us stop to ponder where the medical knowledge from which, I hope, we benefited came from.
At one level, the answer is relatively simple. It came from the study of countless other patientsour parents, our grandparents and their grandparents back for countless generations. I suppose that it might be hoped that by today we would know all that there is to be known about the human body. Sadly, that is far from the case. Human beings are probably the most complicated organisms ever to have populated the Earth.
Over the centuries medical knowledge has advanced in different countries and different cultures on parallel, but often quite different, tracks. That was because until the last century this progress was almost entirely empirical and reflected local ways of dealing with local problems, some of which worked and some of which did not.
Modern science and modern instrumentation have revolutionised understanding of the complicated physical, chemical and biological processes that take place in our bodies; detailed imaging and analytical processes and tools have now give some glimmerings of how they work. However, every new technique that offers new understanding simultaneously opens up and illuminates new areas of ignorance. Understanding of the human genome begins to put on a scientific basis what, of course, we have all always known; namely, that we are all different. That implies that in minute ways our bodies may function slightly differently and that they can respond quite differently to the same drug or exposure to infection. But more importantly it carries with it the prospect and, indeed, the possibility that we can cope with these much better than ever before.
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The point, simply put, is that there is still an immense amount that we do not know about the human body and the various pathogens that affect it. Nevertheless, by and large, each successive generation has had the benefits of a higher level of medical knowledge than its predecessors. That beneficial progress has to a large extent depended on the ability of the medical profession to make, to collate and to store observations made on our bodies. I believe that we have a moral obligation to ensure that that progress does not stop.
The advance of medical knowledge and the improvement of medical practice depend on the ability of our medical schools and medical research institutes to make observations on living and dead tissue and on their associated conditions. Anything that we do to inhibit that may inhibit the progress of medical research which is for the benefit of all.
It is particularly important that the potential uses of human tissues or data should not be too tightly prescribed. You can never tell in which direction the next important life saving discovery lies. I recall years ago a colleague in Cambridge completing a government questionnaire in which he was asked to explain what research he would be doing in five years' time. He responded, "I don't knowand if I did I would be doing it now". The noble Lord, Lord Winston, gave us a vivid example from his own early research career of how his work might have been inhibited. We simply cannot tell where the next brilliant idea will take us or guess what lies round the corner. I must say that I am terrified by some of the provisions of the Bill as it stands. Having embraced the general principle of the use of human tissues for appropriate research, let us not strangle it by regulation. A real danger arises if the regulation is undertaken by people who simply do not understand the problems.
It goes without saying that most of us do not wish detailed medical information about ourselves to be publicly available. It is for that reason that data and samples should be anonymised and not attributable, as far as possible, to individuals by name. However, important information will be lost if samples and data relating to the same individual cannot be related to each other. It is for that reason that the voluntary Biobank project will be so important.
Although access to information for research is important, for reasons that I think are generally accepted, it cannot be unregulated. Medical research is subject to the general oversight of ethics committees. Their working is not perfect but there is little argument that they play an essential role. Furthermore, we must accept that particular individuals may have religious or ethical objections to some aspects of medical research. They may wish to withhold permission to use their data or samples in particular ways. I believe that it is absolutely right that those wishes should be respected.
In conclusion, we have today heard a great deal about the rights of individuals but relatively little about their obligations. I personally believe that we should move slowly towards a situation in which everyone receiving medical attention should do so with
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the glad expectation that observations made on them and samples from their bodies should be made available anonymously for medical research in order to help others unless they expressly indicate to the contrary. I accept that there is a major hearts and minds job to be done but this is the direction in which we should move.
It would not be right for us now to withhold from medical researchers the information that will bring to future generations medical progress such as we have ourselves enjoyed. In this, as in so many walks of life, the debt that we owe to our parents has to be repaid to our children.
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