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Lord Turnberg: I am grateful to my noble friend for that thorough and full explanation of the reasons why my amendment is not acceptable. However, it is important to clarify the issue, if only for the research ethics committees, which are placed in a difficult position and have to make difficult decisions. The
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more guidance and help that they are given one way or another, the better. Having said that, I beg leave to withdraw the amendment.
The noble Baroness said: Clauses 30 to 33 worry me very much. I would never have believed that we in Britain would pass a law to permit experimentation and researchintrusive research, at thaton mentally handicapped people without their consent, but however one reads the Bill, that is what it does. It is claimed that the safeguards will protect mentally handicapped people, but I cannot see that the Bill's safeguards alter what is proposed. I simply cannot think it right to make use of living, breathing human beings unless they knowingly give their agreement.
So what? That certainly does not protect the patient necessarily. The Bill states also that the research must be subject to regulations, if it is a clinical trial. I accept that the regulationswe have heard a little about themare in place and effective, but they still do not alter what the Bill permits; namely, the use of mentally handicapped people without their permission. The regulations do not change in any way the fact that that is what the Bill does.
The wording of subsection (2) is rather odd, because it tries to define "intrusive". We heard quite a bit about that earlier. I would not have thought that it was necessary to invent a new meaning for "intrusive". We can reach up for a dictionary or get one from the Library. I looked in my dictionary to see what "intrusive" meant there. The word was simply defined as,
The Bill states that research would be "intrusive"we have heard a little mention of thisif it would be unlawful to carry it out on someone who had capacity to consent but without his consent. I puzzled over that a great deal; would it not be illegal anyway? Is it not surely illegal to carry out research on people who have already said they do not want it? I wonder whether that happens very much. I would think that if it does, we should have seen some lawsuits about that little matter. Nobody is nervous about going to law these days. We are becoming increasingly litigious. I would have thought that to find that you have had a piece of research carried out on you when you specifically said that you did not want it would be grounds for a court
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case. The definition of "intrusive" proposed by the Bill is a very strange yardstick, and it certainly does not give protection to our mentally handicapped patients.
"Connected with"? It is not necessary that he definitely has that condition. The research must be "connected" with him. The clause does not state how. It is not something that the patient suffers from. We can all be affected by something that we do not suffer from; for example, if one has a deaf partner. You should try living with someone who wants the television turned up so loud that it nearly blasts the windows out. That is "connected with", but it is not your condition. There is no protection in that, and it is protection for these people that I am seeking.
What about all the people who will be consulted about all this, or "consultees", if I may call them that? Will they be family? The Bill does not state that. Perhaps it does not state it because many mentally handicapped people have no one who really cares much. We all know that women and married couples who are older are more likely to have handicapped children. That has often happened, and I have seen it happen. Those parents have died by the time the mentally handicapped person grows up a little. In my old constituency, I have seen many of these people looked after by some wonderful nuns, but they could not be consultees because they do that job "in a professional capacity", as the Bill states, so that is not where the consultees are coming from.
The Bill goes on to state that the researcher must provide someone to consult. Researcher? That is rather like a gamekeeper asking another gamekeeper to be the researcher, or the poacher doing the same thing. If the researcher is the one who has to provide the person to consult, is not he at least likely to appoint somebody who will be on his side? The Bill then states that the researcher must nominate a consultee who,
But he can easily nominate someone who is connected with the researcher. The Bill does not state that he should not do that. That is the kind of thing that worries me. Nothing in the Bill, as far as I can see, would stop a researcher nominating a consultee who is his cousin or wife or perhaps somebody whom he has known for years and is a very good friend.
Clause 33(2) states that nothing may be done to the patient to which he shows signs of objecting. Who is going to blow the whistle on that? Who else is present, when the research is being carried out, except those who are actually carrying it out? Who is going to say, "Oh, yes, I was watching that bit of research, and I saw him clearly object"? People like that will not be there. Who is to ensure that the patient has not been given drugs that render protest impossible? That certainly is not illegal in any way under the Bill.
One correspondent of mine who is a researcher wrote to me after he read my speech on the matter on another occasion. He told me how much researchers want to have warm, live human beings to work on. He
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said that the pharmaceutical industry stands to gain immense profits when full research on people is able to go on. He said that bribery could certainly be involved if the possibility of such research came about, and he urged me to continue to express concern and continue to fight for mentally handicapped people. All of the things which I describe could happen under the Bill. I am not saying that they will; I am saying that I do not see any surety in the Bill that they will not.
We are told that the only way in which knowledge about conditions that cause mental illness can be obtained is by use of these poor people, but that is not true. Doctors at the Brain Research Institute of the University of California have been researching Alzheimer's disease for some time. Last year, they announced that they had made what they called a "significant breakthrough" in their knowledge of what causes Alzheimer's disease and how to treat it and so on. They did it without using any human guinea pigs. Why not at least look at that research? Why not ask them what they did and how it has come about and see whether it is possible to advance in that way?
It worries me that, if one checks the wording in Clauses 30 to 33, the mentally handicapped patient will be sacrificed without any certainty that he will benefit. The Bill does not say that there must be no risk to the patient, merely that the risk must be negligible. The Minister said that it would be negligible but the wording in Clause 31(5)(a) is "likely to be negligible", not "negligible". Even if the wording was "negligible", it would worry me, but "likely to be negligible" is a matter of extreme concern. It would be bad enough if the Bill just said that the risk must be negligible, but "likely to be negligible" worries me.
Where there is any risk at all, I do not think that anyone should be experimented upon, or be the subject of research, without his agreement. To give tacit agreement to inflicting risk that is only "likely to be negligible" cannot be right. One person's interpretation of negligible may be quite different from another person's. A brave man might call having his leg off a "negligible" operation. His mother or his wife might take a very different view.
That brings me to another of my concerns about the Bill. Many years ago, I was warned by a very experienced parliamentary draftsman never to use the word "reasonable". He said that it is impossible to define. What is reasonable to one person will be extremely unreasonable to other people. "Reasonable" is woolly and vague and its meaning is never clear. Yet the Bill is deluged with the word "reasonable". It is peppered with it more thickly than Gordon Ramsay peppers his steak au poivre. The word is used 22 times up to Clause 30. It is used three times in Clause 31 alone. After that, I gave up counting. The word is so vague that it should be used rarely, if at all. To have it appear so copiously in a Bill of such importance to life, death and ethics is highly alarming. I think it was the Queen in Alice's Adventures in Wonderland, or maybe it was somebody else in Through the Looking-Glass, who said, "It means whatever I want it to mean". That is what "reasonably" means. A person may not find something reasonable at all.
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I would have much preferred to see these clauses removed from the Bill and "hoovered" so that they would not have the word "reasonably" in them at all. I would like to have inserted more thought and care for the people who we are talking about. I believe with all my heart that we should extend more, not less, care to the mentally handicapped and we should certainly not do to them what we would never do to those who are fortunate enough to have all their capabilities.
"In the work of research, ethics must sometimes prevail, in spite of the importance of research to medical progress. The Government is trying to rush this too far in favour of researchers and to the detriment of 'subjects'".
As one stumbles through the maze of undergrowth in the Bill, it becomes plain that the research and experimentation legalised by the Bill need not benefit the subject at all. This was acknowledged during the debates of the Select Committee set up to study the Bill. One answer to my objection to using mentally handicapped people in this way was that I wanted to prevent such people benefiting society. I want to save them from being used when they have not agreed to be used. If they cannot agree, they should not be used. I think mentally handicapped people are like children. They are not on this earth for our convenience. We should give them far more care and consideration than we give the rest of us. I beg to move.
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