Clause 30 - Research
Mental Capacity Bill
4:00 pm
Mr Tim Boswell (Shadow Minister, Home Affairs; Daventry, Conservative)
Of course there is a difficulty; the inference is that in the end some cases might have to be
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
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.
I 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—