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3.45 pm
Dr. Ian Gibson (Norwich, North) (Lab): The erudition shown by all hon. Members makes it easy not to be repetitive and ask the same questions, which will be tackled in many places.
I have seen many human tissues from cancer patients and worked with them at all levels. I have especially examined DNA and cancer genes, which have recently been shown to be important in defining whether someone may get cancer and whether it runs in the family. It was important that we did not have to go back for permission once it had been secured. I hope that we will preserve that because this country has been at the forefront of such work and won Nobel prizes for it. It has also been important to share the information internationally.
During the Alder Hey business, several constituents who had, sadly, lost their children approached me. They were worried about the location of tissues and I took them to various hospitals throughout the country. I especially remember Great Ormond Street hospital because the parents wanted the microscope slides and tissues—not organs but tissues. After negotiations, and because of the furore, they were able to bury the microscope slides. Whatever our personal feelings, we must understand how those parents felt. For them, something had been taken away and they wanted it restored.
We need to restore public confidence in science and medicine. The march of knowledge depends on that; we cannot move forward without the public behind us. The Bill recognises that—it is one of its major features. I believe that the measure will be a landmark Bill, of which we shall all be proud.
Any regulations that we make require the serious thought and involvement of many different parties. We get it wrong at our peril. If we do not get it right, there will be media controversy, communication breakdown and a lingering cynicism about organisations whose intent is honourable. We must get the conditions right. Public trust is hard to win but exceptionally easy to lose. We all have experience of that. Trust is often the key to the political success or failure of regulation.
Scientific and medical authority will no longer legitimise new regulation. I said "authority" but some people would use the word "arrogance" for the assumption that one can act without asking permission. When we took tissues, we had long discussions with people about the purposes for which they might be used. After a while, they would come back and ask, "What did you find out?" It is in the nature of things that one does not always have much to say, but such questions emphasise that people have given tissues and expect something to happen.
Open government requires public engagement, which is difficult to achieve. Attempts to get the public to come forward and get involved are plagued with many difficulties. We are finding that with genetically modified crops and measles, mumps and rubella. We must take on the problem and try to ensure that the process is inclusive and that nobody is denied the right to say something. In that context, the fastest growing profession is that of people called ethicists. They are crawling out of the woodwork and making millions. The subject used to be called moral philosophy. Is there a difference? I can never understand it, but people will go on for hours about the difference between an ethicist and a moral philosopher.
Earlier, it was said that one can never tell what one will find from tissues that are kept and maintained. One never knows what will be found as knowledge moves forward. Let me give two examples of that, because it is important to get this message across to the public during the debate on these issues. The causal agent of peptic ulcers was discovered by a pathologist—an histologist, indeed—who looked at tissue and saw some wiggly things that turned out to be bacteria in the ulcer material. He asked permission to examine certain archive material and, blow me, he found the bacterium helicobacter in every piece of ulcer material. That caused a revolution in the way in which we treat peptic ulcers. Instead of using all the treatments that had been available previously, we suddenly had the drug that had been developed against that bacterium. That discovery revolutionised the treatment.
The other example involves rectal tumours. People suddenly discovered, by examining tissue, that they had to cut out more than just the rectal cancer. They discovered that they had to extend the surgery a little further because the cancer returned in those patients who did not receive such treatment. When examining the cases of patients who had survived for long periods of time, it was found that extra tissue had been taken from around the rectal cancer. That discovery was made while examining archive material. There are many similar examples, and I am sure that the professional organisations could get involved in telling us all about those developments.
The examples of those two practices could be used to build public confidence as the Bill proceeds. We shall all be very proud that, following the tragedies that have occurred, we have found a way of restoring public confidence, not only in the practice of taking tissues but in science and medicine generally. That confidence is badly in need of repair, and we are now part of a huge process of revolutionising medicine and science in this country.
3.51 pm
Mr. Kenneth Clarke (Rushcliffe) (Con): I welcome the Bill, so far as it goes, and I certainly agree that this area of the law is in need of modernisation and clarification. The law as it will be after the Bill has been enacted will be a considerable improvement on what we have now. I hope that we get it right, and that the Government continue to pay attention to the concerns of those in the medical research and other establishments, and to ensure that we do not over-react to the understandable public horror at the excesses that were revealed a few years ago in such a way as to damage worthwhile
medical research. I share the views of those who are not sure that the wording of the Bill is quite right, and who think that there is a need to consult, particularly as it was not possible to produce a draft Bill. We shall not have an opportunity to return to this issue often.I hesitate to upstage the Father of the House, but I recall that, when I was a student, I went into the Strangers Gallery after a dinner in the House and found myself listening to the Second Reading of the Human Tissue Bill. At the time, I did not think that I had picked the best possible evening to witness the heights of political rhetoric, but subsequent experience in the Department of Health and of the reactions to recent events has shown what a sensitive subject this is. I think that the hon. Member for Sutton and Cheam (Mr. Burstow) was a little harsh to criticise the authors of the 1961 Act; it has lasted for more than 40 years. We do, however, need to re-establish such principles as informed consent and to re-establish the reputation of those who need human tissue if they are to make valuable progress in medical research.
The subject on which I propose to concentrate today is the impact of the Bill on the problem of the shortage of donor organs for transplant in the national health service. I have always believed that that is a serious clinical problem, and it is getting steadily worse, year on year. In 2001, when I drew a place in the ballot for private Members' Bills, I produced a Bill called the Transplant of Human Organs Bill to enable us to have a debate on the problem of that shortage and to seek to tackle some of the essentially legal problems that are causing the difficulties involved. I was drawn seventh in the ballot, so the contents of my Bill were extremely modest—it had to be non-controversial in order to get through. It did, however, give us the opportunity to canvass opinion on other things.
My Bill did not receive the support of the Government or the then Minister, whose response was that the Government were waiting for the comprehensive survey of all the legislation on which they would then embark. I was somewhat irked by that response, but I congratulate the Government and the present Minister on having addressed at least one of the fears that I expressed at that time. I feared that it would take years to get parliamentary time for a comprehensive Bill on the subject, so I congratulate her on having got a measure into this year's programme and giving us a chance to address the problem.
Whatever the Bill's impact in the other important and sensitive areas involving human tissue, including its retention, control and use, I fear that it may be regarded as a missed opportunity to do something positive about the continuing shortage of donor organs. I understand why the Government are cautious in this area—the issue is terribly sensitive, so they are right to be cautious—but opportunities rarely arise to rectify the legal problems that give rise to the needless death of many patients awaiting donor organs.
In 2001, there was a fear that the strong and understandable public reaction to the tragedies and scandals that had been unveiled at Alder Hey and at Bristol would damage the organ donor programme.
Fortunately, that did not happen directly because everybody struggled to ensure that it did not happen, but the Government's approach to the Bill has been coloured by the recollections of the ferocious public reaction to the subject as a whole. That has made them more cautious than they need otherwise have been on organ transplantation and the availability of donor organs.The bulk of the public recognise the value of having donor organs for those who suffer failure of one kind or another, of their kidneys or hearts in particular, and there are different public attitudes on that subject, which are easier to address than some problems that arise in the examples of anatomy, training, research and so on.
The organ donor problem is important. Although successive Governments, for as long as I can remember, have tried to tackle it, we ought to face up to the fact that our efforts have not been very effective. It is one of the biggest problems in the NHS that large numbers of people are dying needlessly because of the shortage of organs for transplant. It has already been stated that several hundred die each year who are on the waiting list, waiting for an organ to become available.
The problem goes beyond that in my opinion, because, quite apart from the death of those who are still waiting, the difficulties in the lives of people who spend some years waiting for an organ transplant while contending with dialysis or with exhaustion, which can affect a patient who needs a heart transplant, are considerable and do enormous damage to the quality of life of many of our constituents.
The difficulty is that the problem is increasing. The situation is getting slightly worse year by year, not getting better. I am obliged to the Library for enabling me to tell the House that the lengthening waiting lists had reached 5,793 at the end of November 2003. Those are all people who could benefit if more donor organs became available.
In practice, although the number of patients who are getting on to waiting lists because medical science will enable them to benefit is increasing, the number of donors—in particular, cadaver donors—is slightly decreasing each year. The problem is therefore getting worse. I believe, and I think we all accept in principle, that that situation could be improved by changes in procedures, but also by changes in the law. Legislation would not in itself solve the problem, but where it could contribute we must ensure that we take this opportunity to get it right.
I welcome some changes that are being made to the procedures designed to speed up the process of identifying available donor organs and making them available to those who are going to treat patients, as well as the Government's attempts to streamline the functions of UK Transplant. The Bill also tidies up some important details of the law, which I addressed in my private Member's Bill, but it does not go to the heart of the matter. The biggest and most important question about the availability of donor organs from people who are deceased is that of consent. I am afraid that the Government have taken too cautious a view.
Let me make it clear: I realise that assent is at the core of every aspect of this Bill. The principle of
informed consent is absolutely essential, and I trust that no civilised person would seek to deny that as long as we do not take it too far in the case of blood samples and minor slide samples, as others have mentioned. Of course, it is essential that no organ is used for donation to a sick patient if we have any reason to believe that the deceased person would have objected to that, or, if the deceased person had expressed no view, if some close family member would be deeply distressed if it took place or believed that the deceased person would have objected. All that must be coped with. The present position, however, puts many obstacles in the way of making use of available cadaver organs, which goes far beyond that.The biggest single issue that troubles me, however, is not presumed consent, about which I will speak briefly in a moment. The first issue that I hope we can address is the present confused situation in which people carry donor cards or have their names on the NHS organ donor register. We all accept that not enough people carry cards, and not enough people put their names on the register. We should ask ourselves, however, what assumption are people making if, as I hope everybody in the Chamber does, they carry a card or their name is on the register? I think that we all assume that if that desperate misfortune happens, and we are run over crossing the street and die, when someone finds the card in our wallet, or looks up our name on the register, the whole process will instantly move into gear, with the transplant co-ordinator trying to find out whether anyone can make use of such organs that remain in a usable condition. As I understand it, however, that is not what occurs.
In many cases, the card that we carry is used by the staff of the hospital to assist them in getting the consent of the relatives for the use of the organs. It is used as a basis to try to persuade no doubt desperately bereaved relatives that the person who has just died would have wished that to happen. That is no doubt helpful, but it does not cut out the process of deciding which relatives to consult, getting hold of them and handling people at a time when they are most vulnerable, and sometimes least rational, and trying to get them, in the middle of their grief, to address the problem of whether the kidneys or heart can be removed for the benefit of another patient.
It is astonishing that the Minister—in no way am I criticising her—was not able to answer when the hon. Member for Oxford, West and Abingdon (Dr. Harris) asked her what I think is the most important question: what is the effect of the Bill on the status of donor cards, and, I would add, on those on the register? I realise the difficulties of holding all the details of such a complex Bill, but if the Minister cannot answer it, what will happen to the practitioners in the field who want to know their legal position? That may require some alteration to the wording of the donor cards, but my belief is that it should normally be assumed that if the deceased person was found to be carrying a donor card, that is the deceased person's consent to going straight into the process of using the organs. My belief about that is even stronger in the case of the NHS register.
In the course of consideration of the Bill, I hope that that issue can be addressed. The Transplant Partnership and the British Medical Association have long
advocated that the law should refer specifically to the NHS register—I would add donor cards to their recommendation—to put the question beyond doubt. When we try to persuade our fellow citizens to indicate a willingness to make their organs available if they should tragically or suddenly die, in conditions in which they have available organs for use, that should be taken as full consent authorising fully what happens.Staff will in any case try to contact relatives and discuss the tragedy with them—there will be no question of their not knowing what is going on—but I see no reason why the long list of relatives specified in the Bill should have the final say. It is, after all, conceivable that some half-brother who had had no contact with the deceased person for some time might turn out to hold religious beliefs that the deceased person did not have, and refuse consent; or the divorced parents of a deceased child might have arguments that staff could not resolve. The point of the cards and the register is to avoid such problems.
It will be suggested that staff find it convenient to have the cards in order to obtain the consent of relatives. I am sure that that is true, as most relatives do consent when they know that the person carried a card. The problem, however, is not that when people get around to it they cannot use the cards to obtain the consent of relatives, but that the process involved puts people off. In a hard-pressed intensive care unit people simply may not bother to work through all the relatives and find a suitable one, while ensuring that no relative in a priority category has been missed out. No bother will be necessary if the discovery of a card means it is possible to proceed, and then inform relatives as quickly and as sensitively as possible.
The Minister was not able to answer off the cuff when asked this question earlier, but can we be told whether the carrying of a donor card or the registering of a name will in itself constitute sufficient consent for organs to be donated? If the answer is not clear, will the Minister undertake to ensure that it is made clear during the Bill's progress, so that in due course an Act will make it crystal clear that carrying a card gives the go-ahead for the use of organs?
I shall not say a great deal about presumed consent, because the issues are clear and no doubt the subject will be discussed when an amendment is tabled. Obviously there will be a free vote for all parties, given that the issue is devoid of party politics. I support what the Transplant Partnership and the BMA have called the soft presumed-consent procedure, whereby the seeking of relatives' consent starts from a presumption that if there is no evidence that the deceased person took any steps to object, that constitutes his consent—but if relatives who are found express strong views priority must immediately be given to their feelings.
That would not constitute a dramatic change in itself. No one is suggesting that relatives should not be consulted or informed of what is going on. I believe, however, that presumed consent would give rise to a more positive view of transplantation generally in the NHS, and indeed would help relatives. If the presumption is that organs will be used unless relatives have strong moral or religious objections, or believe that the deceased person would have objected, relatives will in fact be relieved of some of the burden of having to
give positive agreement to the cutting up of a body to remove organs that are not diseased. In their desperate state, they may not feel able to make such a decision.That is what the Spanish do. I accept that it is not the only thing that is done right in Spain, and not the only thing that produces a better record than ours throughout western Europe when it comes to the availability of donor organs. I believe, however, that it must contribute to that. As I said earlier, the cadaver donor rate per million of population in Spain is more than double our own rate. I believe that we have the worst record in western Europe. We must do something about that weakness in the law.
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