| Mental Capacity Bill
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Mrs. Humble: The hon. Gentleman is making an interesting presentation, but the best interests test is deliberately not phrased as the ''best personal interests''. We have had much debate about that. I want to throw a suggestion into the pot. The hon. Gentleman gave an example of an Alzheimer's sufferer. If the research was wide-ranging research, examining the causes of mental incapacity, does he consider that that could comply with the general best interests test, even though it might not be in the personal best interests of the individual because he is beyond that? Mr. Boswell: I found it difficult to follow that argument, although I understand why the hon. Lady made it. She is acknowledging the difficulty under the clause. We can either work on the basis that the best interests of the person concerned means what it says it does and legal practice, which is that person and no other person, or we can take the view that there is a general good that transcends that. Let us consider the scheme of the Bill. If we start with the presumption of mental capacity, people may make advance decisions that are contrary to their best interests. However, when they lose capacity, no one is provided under the principles of the Bill with a facility for making decisions for them that would be contrary to their best interests. That is the nature of my concern about the matter and where a difficulty arises. Mrs. Browning: We had a lot of deliberation about such matters in the Joint Committee. My hon. Friend will be aware that the Scottish legislation states that the research must be of real and direct benefit to the adult. We heard evidence from Dr. Lyons, who said that that was a difficulty because if the research was of real and direct benefit to individuals— Ms Winterton: They should be having it anyway. Mrs. Browning: Yes, because it would not be research, but treatment. A difficulty arises with the definition of research and whether it is someone's best interests. Mr. Boswell: Of course there is a difficulty; the inference is that in the end some cases might have to be Column Number: 260 resolved by the court. I am conscious that practice that has been ill defined in the past and many such things have taken place. We seek to regularise practice in a way that is congruent with the rights of the individual—indeed, their rights under the convention—as well as with our general wish to support their best interests and to provide a regime under which such support can be provided.I do not have them before me, but Birmingham university and others have made powerful representations about urgent research, which say that we might effectively stop the research process by imposing restrictions. I understand the concerns about that; I also understand the concerns about achieving the equivalent level of safeguard if there is urgency. Many years ago, I had experience of a family member with a head injury. I did not get to know about it immediately, and was not even in the same country until some time after the event. However, I realised the difficulties involved. The issue is difficult. One does not want to stop all research, or make the system inflexible, but there are issues of principle that are difficult to run away from. The other technical issue of concern is about whether research is intrusive. I am not sure that that would be a useful test either. The Government are clearly uncomfortable about the issue and talk about the research not involving risk, for example. Additional safeguards are set out in clause 33, which would enable the subject, if they flinch and indicate pain or distress, to stop the trial. In fairness, such safeguards exist already in research protocols; I am not suggesting that they do not. However, I am not sure that trying to rewrite on the basis of what might be termed passive, rather than active, research would be acceptable. I do not believe that one can ever breach the best interests test; we need to test whatever we come up with against that. There are wider interests, and we have to establish how they can be reconciled. Personally, I feel relatively happy about tests that involve observation or are incidental to another test that is required for therapeutic reasons. If somebody was having a blood test for one purpose, and it was possible to take some cells from that procedure and use them for another purpose—for example, for investigating the causes or other aspects of Alzheimer's disease—I do not think that that would be objectionable in principle or practice. That might be a way forward, but anything that could involve even a little bit of pain or distress would be very difficult to reconcile with best interests. We have to look hard at how we are to deal with that. If one is honest, and the Government might have wanted to look at the issue in this way, one might say that the best interests test is too restrictive. I hope that in practice most of the issues can be resolved. In conclusion, I offer the Minister one thought, which is about an aspect of best interests that we have not debated, although we have debated nearly everything else about that issue. Clearly, one does not want to harm the individual—indeed, that would not be consistent with the doctor's professional oath. Clearly, one wants to promote the best interests of the Column Number: 261 individual, because that is the cardinal principle of the Bill. From time to time, acts will take place that will be difficult to classify as being in a person's best interests or otherwise. They may be neutral acts that do not damage or automatically benefit the individual. However, an individual who is alive, even if they do not have capacity, has to live somewhere. They are alive, breathing and carrying out involuntary actions. It may be that we will come to a point at which we are able to say that some things congruent with the research protocols could be carried out because they would not damage the individual, and that we would let them take place because they were not inconsistent with the individual's best interests. I am using a double negative, but I think that the Minister will understand.
4.15 pmI return to my central point about breaching the best interests test, there is a second aspect to it. If we are to go down this road—perhaps further reflection in the light of the Minister's response is needed at a later stage of the Bill—we must also look quite hard at the safeguards that are built into the process now. There will be urgent cases, and I am conscious of the difficulties that clinicians face, not only in their research but from legal challenges to their actions. We must make absolutely sure that, if we are to countenance this, we do not make it an excuse for practices that we would all live to regret. Mr. Tom Clarke (Coatbridge and Chryston) (Lab) rose— The Chairman: I express my thanks to the right hon. Gentleman for taking over earlier and allowing me a modicum of relief. Mr. Clarke: I join my hon. Friend the Minister of State in welcoming you as Chairman of our Committee, Mr. Cran. Indeed, during those few moments when I proved to be a wholly inadequate substitute, I realised how onerous are the duties that we impose on you. The Chairman: Order. Insulting the Chairman is not allowed. Mr. Boswell: Or flattering the Chairman. Mr. Clarke: The ambiguities that have haunted the Committee thus far continue. From your viewpoint, Mr. Cran, I also realised what a fine body of men and women serve on this Committee. To turn to the serious aspects of our business, my purpose is to speak to my amendments Nos. 178, 179 and 180. I begin by declaring an interest as the co-Chairman of the all-party group on learning disabilities. I have had a great deal of help from that group as well as the Making Decisions Alliance, which, in truth, has been immensely helpful to all of us on the Committee. We appreciate very much the work that it does. In the same way that people with impaired capacity should not be excluded from services and medical treatment, it is important not automatically to exclude them from research. I tabled the amendments because I believe that research raises several difficult ethical Column Number: 262 questions; hence, the most stringent safeguards must be put in place. Dignity, privacy and protecting people from harm or exploitation must be paramount. I tabled the amendments to give my hon. Friend the Minister and the Committee the opportunity to reflect on and respond to the numerous representations that have been made to me and, doubtless, many other right hon. and hon. Members, not simply from the organisation that I mentioned but also from constituents in our surgeries, offices and elsewhere.My hon. Friend the Minister said that ''reasonable grounds'' were a high test for someone to pass. Amendment No. 178 would make it absolutely clear in the Bill that it is simply not appropriate to carry out research on people who lack capacity if it is not possible to carry out the same research on people who can give their consent. That is a crucial issue for our discussion. My hon. Friend the Minister will recognise that that test is used in the Adults with Incapacity (Scotland) Act 2000, which has been highly praised on both sides of the Committee again this afternoon, and to which I have referred previously. I should be grateful for further expansion on the reasoning behind departing from that wording. I accept an argument that I myself made earlier: there is no reason, given our commitment to devolution as a United Kingdom Parliament, why we should expect devolved Assemblies to emulate everything that we are doing. It is fair to make that point. Amendment No. 179 is essentially a probing amendment. I simply want to tease out and put on the record what my hon. Friend the Minister means by ''benefit''. The final amendment in the group, amendment No. 180, is also a probing amendment. It is worth highlighting that, as the clause stands, there are two potential get-outs for researchers. I seek reassurance from the Minister on a point that worries a great number of people, and certainly worries me. Researchers can undertake non-therapeutic research on an incapacitated person if they have
The word ''reasonable'' in such close proximity to ''likely'', and the looseness of phrasing, make me feel a little uncomfortable. I look forward to the Minister's explanation. Amendment No. 180 probes the Government's reason for wording the clause in that way.
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