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As I was saying, the difficulty is that it would be extremely difficult to ensure on every occasion that such research was in the best interests of P, so in effect, such a provision would prevent a great deal of research.
Amendment No. 44 deals with an issue that was raised in Committee. I understand and share Members' desire to protect someone who may lack capacity from decisions taken by a court-appointed deputy whom they did not choose to represent them. However, the problem is that such a deputy might well know and be related to P; in effect the amendment would exclude a number of
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people who might be in the best position to know whether P would have wished to participate in such research. The court might well appoint a relative, friend or carer as the deputy, and we would not want to exclude such a person. However, I sympathise with the concerns expressed and we will amend the code of practice to make it clear that if a deputy has no relationship to, or knowledge of, P before their appointment, they should not be consulted on the question of P's participation in research. I hope that that deals with the concerns expressed.
I shall deal briefly with the Government amendments. Some very useful suggestions were made in Committee and I agreed to look into them. We have tabled a number of amendments that draw on policy intention behind the various clauses. As drafted, clause 31 unintentionally prevented research into a condition or illness that causes incapacity, such as variant Creutzfeldt-Jakob disease or Alzheimer's, even where such research might be of benefit to P. As per our original intention, Government amendment No. 7 will allow research into anything that causes or contributes to P's condition, as well as anything attributable to it.
Government amendments Nos. 8, 9 and 10 deal with removing a researcher's right of appeal. As was pointed out in Committee, as drafted clause 32 would give a researcher the right to apply to a court if a carer, friend or relative objected to P's taking part in the research. Frankly, that seemed rather unreasonable. If the carer or friend says that there should be no further research, there should be no further research and no further argument about it.
Government amendments Nos. 11 and 12 deal with research in emergency cases. There were some concerns that the Bill as drafted was not clear enough about research done in emergency and acute medical settings. An example would be someone who had a head injury or stroke, for which swift treatment is often vital. There may be ways in which research could be done in relation to such treatment. Pumping someone's heart 15 times instead of 10 times in order to revive them might be relevant.
Presently, it is unclear whether consent is required before such treatment can be carried out. The amendments clarify the point that the provisions apply to cases where urgent treatment is needed. I hope that that makes our intention clearerthat we do not envisage the provisions covering circumstances where a researcher just wants to act quickly. Rather, they apply to where people are suddenly incapacitated and the research relates to their particular condition at the time. Again, the research team would have to agree the specific detailed proposals with the research ethics committee before a trial could be approved.
Government amendments Nos. 13 and 14 help to clarify the provisions on advance decision and the final amendments that we have suggested on research are also clarificatory. Clause 33 states that a researcher must not act in a way that is contrary to a person's advance decision. Amendments Nos. 13 and 14 make it clear that that applies to any earlier statement a person has made
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about not participating in research and is not limited to advance decisions as defined in clauses 24 to 26. If someone has said in advance that they are opposed to medical research and do not want to take part in it, the researcher must respect that and not enrol them in the trial.
In conclusion, I understand that there are difficult issues surrounding research, about which hon. Members feel very strongly. People who represent those who lack capacity, including their families or carers, have made it clear that they feel it would be wrong to exclude people from being able to participate in and benefit from research, either for themselves or others. They feel that it would be almost discriminatory to introduce such a measure. What we have tried to do within the Bill is to balance that need against some very stringent safeguards. We in Parliament are able to lay down some of the necessary safeguards and, by working through codes of practice, implement them. I hope that hon. Members will withdraw their amendments and accept the Government ones.
Mr. Barron : I agree with the hon. Members for Bournemouth, West (Sir John Butterfill) and for Tiverton and Honiton (Mrs. Browning) about the extent of the powers that the Secretary of State could use if he were to bring in an order under new clause 3. It would be a brave and potentially foolish Secretary of State who wanted to deal with issues such as sterilisation or abortion by making an order, yet the new clause might well allow that to happen.
The hon. Member for Stone (Mr. Cash), who is no longer in his place, was right to bring certain issues to our attention. He was absolutely right to mention the conventions and ethics that members of the medical profession adopt. They are always important when we are trying to bring into law, as it were, the legal rules that have developed under common law in recent years.
I hope that the hon. Member for Somerton and Frome (Mr. Heath) was satisfied, as I was, by what the Minister said about diagnostic tests. I believe that the profession has a right to ask questions about that as we attempt to bring this law to the statute book.
The hon. Member for Beaconsfield (Mr. Grieve) mentioned the use of emotive language. I would not use a phrase like "guinea pigs" in respect of the use of incapacitated people for research, and I would not condone the clauses on research if such language were used. However, in some areas it is vital to use people who lack capacity for research purposes. Such research must be carried out properly, but the benefits can extend beyond the person involved to other people who may suffer similar incapacity. An obvious example concerns people who lack capacity as a result of road accidents or head injuries. The effects do not always last forever, as people make progress with such injuries. I am no expert, but I am sure that the treatments and drugs derived from such research benefit others in similar circumstances. The medical profession wants people to know that there are legitimate reasons for conducting such research when the aim is to assist people who might in the future lose capacity because of similar accidents.
I am sure that the BMA will be reassured by what my hon. Friend the Minister said in response to the concerns that it has expressed. I thank her for the
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clarification that she has supplied. The code of conduct offers more in the way of explanation about those matters into which research can be conducted, and I hope that the BMA will be satisfied with what she said.
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