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Baroness Masham of Ilton: As I put my name to these amendments, I support what the noble Baroness, Lady Knight, has just said. At a recent meeting here in your Lordships' House, several people with learning difficulties said that they were concerned that other people would be taking decisions on their behalf and that they did not like that. We should recommend that people who have full capacity and agree to research should be the ones who take part in research, not those who have said that they do not want even their relatives to take decisions on their behalf. The noble Baroness, Lady Knight, was at the meeting when they said that quite clearly. We have to think very carefully. It is a different matter when people agree to something. That is all I have to say, as it has been well said by the noble Baroness.
Lord Turnberg: I appreciate the reason behind the amendment of the noble Baroness, Lady Knight. She wishes to make the reason for doing research to be of direct benefit to the patient. Unfortunately, that
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conflicts with the purpose for which research is done. Please resist the idea that I am trying to support unethical research. I am not. I only support research that is done ethically.
Research should be done only where the answer is not known before the research is done. It is because there is doubt that research is done. If one knows that doing something to a patient will benefit him, instead of that it has the potential to benefit him, then it is no longer research. Indeed, it would be unethical to perform research when the answer is already clear. It would be unethical to deny the patient the benefit of the treatment on which the research is supposed to be being done. It is only if it is not known whether drug A is better than drug B that research needs to be done.
The logic of this amendment would prevent even placebo-controlled trials, since half the patients would be given a placebo and would not be expected to benefit. The noble Baroness gave an example of research in the USA into Alzheimer's disease that did not involve patients. Much basic research is done in that way but, at some time, that research has to be applied to patients. One will not know that something will work until it has been tried on patients, so they may, or may not, benefit. It was only when we suspected, but did not know, that early anticoagulation was valuable in patients with cerebral thrombosis that the research was necessary. Once we knew, research on that specific issue became redundant.
So, one cannot know whether research is beneficial until it has been completed. If it turns out not to be beneficial, we will at least know that that line of management is not worth taking in future patients. For that sort of reason I do not think that this amendment is workable in practice.
Another point arose on research in general on which I should comment. Every one of us relies heavily on research carried out on others who may not have benefited themselves. All those who lack capacity for one reason or another today rely absolutely for their care on research conducted previously on similar patients. There is of course, as the noble Baroness said, a difference between patients who lack capacity and those who do not give consent. But I believe that the robust safeguards which these clauses provide for such patients are clear and unambiguous and should give some reassurance on the reasonableness of this approach.
Lord Alton of Liverpool: As the noble Baroness, Lady Knight, was moving Amendment No. 105, I was thinking of a piece of fiction written just after the Second World War by C S Lewis called That Hideous Strength. One of its central characters is Lord Feverston, a fictitious Member of your Lordships'
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House, who sets up an organisation called NICE. The acronym stands for the National Institution of Co-ordinated Experiments. He attracts a young academic, Mark Studdock, into the work on which he is engaged. It takes on a real momentum because there is a desire to make the kind of progress often advanced by those in favour of experiments and research. Those on one side of the argument who are opposed to the development are called the Diehards and those on the other side are called the Progressive Element.
The debate taking place in the Committee today in a way reflects the division recorded in that piece of fiction. Of course the progressive element will argue that good can come from research. The noble Lord, Lord Turnberg, advanced the kind of instances where we with capacity give consent for our organs and bodies to be used for research if we become seriously ill and believe that such research will bring advances for other patients and the wider community. That can be a deeply altruistic and generous thing for someone to do. I certainly have no problem with it and know that the noble Baroness does not either.
However, the noble Baroness has very carefully in her amendment and in the argument drawn the distinction between that situation and the situation for people lacking in capacity where we are deciding on their behalf that it will be for the greater good to allow and permit these experiments. In those circumstances, we must at least address some of the central points that the noble Baroness made in what I thought was a very persuasive speech to the Committee today.
I should like to take the Committee back to the use of the word "reasonable"a point raised by the noble Baronessand directly ask the noble Baroness, Lady Andrews, why that very casual test and very soft word has been used so repetitively throughout this section. There is also the other issue of direct interest. We all know that if we have a hobby-horse, an issue that we care passionately about, sometimes we are tempted to drive that on at the expense of all other considerations. Therefore, ethical issues and concerns could benot always will beset aside, sometimes out of nothing more malicious than enthusiasm. However, I think that if the researcher has a direct interest with the person without capacity, and that researcher is the person who gives permission for the research to be carried out, a cordon sanitaire needs to be erected between the person lacking capacity and the person performing the research; some other person should be involved in validating such a decision.
That is a better test in these circumstances where we will be acting on behalf of someone lacking capacity. Any research that is carried out should be of direct benefit to that person. I think we would be well advised further to consider the issue.
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Lord Hunt of Kings Heath: I well understand the issues raised by the noble Baroness and the noble Lord, Lord Alton. Clearly, there must be sufficient safeguards in the circumstances described to ensure that research is properly carried out. I look forward to my noble friend's response.
My problem is with the wording of the noble Baroness's amendment. I should have thought that replacing the word "potential" benefit by "directly" benefit would have precluded all research. I do not see how one can start with a thought that there will be an absolute guarantee that a person affected in this way will directly benefit. Surely, research is a voyage of discovery. We do not know the outcome of that research. We can presume and hope that there will be benefits. But I do not see how one could absolutely guarantee in advance that there would be a direct benefit. I should be grateful for some clarification on that point.
Lord Alton of Liverpool: The noble Lord brings great experience to this debate from his previous ministerial responsibilities. Does he accept that a linkage should be made between the specific condition of the patient and the research being carried out, so that there is a possibility that it might help or remedy the condition that the patient experiences, rather than just a wider and much vaguer idea of the general good?
Lord Hunt of Kings Heath: Once one starts to define matters in the way the noble Lord does, I suspect that it becomes much more difficult to undertake research. I must confess that I am attracted to the concept of the greater good. Whatever our circumstances I think that there is justification for that, provided there are sufficient safeguards. Certainly, the amendment proposed by the noble Baroness is far too draconian. I do not think any researcher could set out under those circumstances.
Baroness Masham of Ilton: Will the noble Lord, Lord Turnberg, give the Committee a few examples of the sort of research that would be conducted on people with learning difficulties that could not be carried out on other people? I know that a lot of research is performed on the brains of dead people. I have seen an Alzheimer's brain, which is quite different from a normal brain. But research on dead people is quite different from research on the living.
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