|
Mrs. Angela Browning (Tiverton and Honiton) (Con): My hon. Friend might be aware that a year or so ago, with the assistance of the Home Office, I helped to introduce a new rule on the taking of blood samples when, for example, somebody enters casualty unconscious but might be the perpetrator of a fatal road accident as a result of drink-driving. I had many discussions with the BMA ethics committee in the run-up, and we eventually got a solution. It seemed unfair that somebody could go into the mortuary of a hospital having been the victim of a drink-driver, whereas the drink-driver could go into casualty with all the protections that have been mentioned.
Mr. Boswell: I am grateful to my hon. Friend for reminding the Committee of that. Such areas are very difficult to negotiate. We should not demonise the medical profession, but nor should we give it carte blanche. The Committee is picking its way through. I hope that the Minister will reflect on what has been said and on what others may wish to add this morning. We can then hammer out something with which we can all be happy.
The Minister of State, Department of Health (Ms Rosie Winterton): I begin by welcoming you to the Committee, Mr. Hurst. I am looking forward to serving under your chairmanship.
The purpose of clause 31 is to define what kind of research involving people who lack capacity to consent can be approved. Subsection (2) sets out the first requirement: that
My right hon. Friend the Member for Rother Valley made an important point about the grey area surrounding the word ''attributable'' in the clause. He pointed out that we might have not covered absolutely what research might be done into causes. We have noticed that that needs clarification and I assure him that I will consider whether we need to clarify that issue further.
9.45 am
The hon. Member for Daventry (Mr. Boswell) made a point about best interests and the scope for research. The best interests test will apply to acts done or decisions made for or on behalf of P, and the application of that to research is difficult. I
Column Number: 279
acknowledge that to define what might be in general best interests is more difficult—for example, in research projects it will not always be possible to prove that something will be of direct benefit to P, because then it would be a treatment rather than research.
The hon. Gentleman asked about whether blood taken for one purpose could be diverted to another. That touches on some of the points that we have made about whether research would be unduly invasive. Clearly, if blood samples are being taken for one purpose, such as diabetes testing, a research ethics committee might give the go-ahead for those samples to be used, or for a little extra blood to be taken, for a research purpose. However, if conducting the research meant that hourly blood samples had to be taken, a research ethics committee might feel that that was unduly invasive. The Human Tissue Bill, particularly schedule 2, covers some of the issues about samples taken for one purpose being used for another where there are public health issues.
My right hon. Friend was right to raise the point about needlestick injury, and it is important that we look at that. Some of that is covered by clauses 4, 5 and 6, and some of it may cross over with the Human Tissue Bill.
Question put and agreed to.
Clause 31 ordered to stand part of the Bill.
Clause 32
Consulting carers etc
Mr. Boswell: I beg to move amendment No. 45, in clause 32, page 18, line 19, leave out 'or is P's deputy'.
The Chairman: With this it will be convenient to consider the following amendments: No. 181, in clause 32, page 18, line 20, at end insert
'but a deputy shall not be able to consent to research under 31(4) unless the court has conferred on the deputy express authority to that effect.'.
No. 182, in clause 32, page 18, line 21, leave out subsection (7).'.
Mr. Boswell: In a sense, these discussions all hang together. Clauses 32 and 33 relate to safeguards for P if P is participating in a research project. By definition, P lacks capacity if those clauses apply. Amendment No. 45 touches simply—or perhaps not so simply—on the independence of persons who may be consulted about that.
There is a welcome provision in clause 32 for carers and other related persons to be consulted. Subsection (6) refers to
''the donee of a lasting power of attorney'',
who might well be a relative of the person who executed that LPA, so it would be ridiculous to rule them out of being considered as the relevant carer. I ask the Committee to pause and think about the deputy, however, because that person is appointed by the court. He or she may well be a professional person—one who is involved, for example, in social services—who is appointed because there is no attorney and P lacks capacity. People may feel that
Column Number: 280
there is a potential clash of interest for the deputy, who may have other commitments and be guided by his own professional codes or his employers' instructions, and thus may not be able to give an unfettered view. More particularly, as the Committee may realise, even if that person can act in good faith on behalf of the person for whom he is the deputy, other people from outside might question whether he is truly independent. There are a number of solutions to that problem.
I invite the Minister to take this matter away, because I do not want to re-open the debate on clause 31. However, in particularly difficult cases, it may be sensible for the court or a deputy appointed for the specific consideration of the research project to be right outside the box. In such circumstances I would be relaxed about dealing with somebody who was already a court deputy. I am not clear whether, under the proposed legislation, it would be possible to have two people with that formal function in different respects, or whether the court could appoint an independent person who is not called a deputy for that purpose.
I do not want to speak about this at length again, but during earlier discussions I suggested a ''mixed economy'', with as many people involved as might reasonably be possible. It would be all right to use a court deputy, provided that there was another person outside the box of whom it could not be said that they were already committed, or compromised, in taking the decision or giving the advice. I realise that these are difficult matters, but there are a number of ways of solving the problems and the Minister needs to reflect about things, not least because of her concerns about the sensitivity of research going on at the very edge of what might be deemed to be in the person's best interests. That is an underlying principle of the Bill. She needs to reflect on an overt clash of interests that might arise from the drafting of the Bill, or on any potential charges of misconduct that might be levelled at a deputy, even when they were giving advice with the best of motives and in good faith.
It is important to state that we are talking about a person on whom research may be performed, but who lacks capacity. It is extremely important that nobody should be seen to be manipulating the situation to his or her own advantage and not in the best interests of the person involved. We have to maintain that underlying principle throughout these clauses.
Mr. Tom Clarke (Coatbridge and Chryston) (Lab): I rise to speak in favour of amendments Nos. 181 and 182, which are probing amendments tabled to enable my hon. Friend the Minister of State to set out in more detail the Government's thinking on the appropriate safeguards to protect incapacitated people from exploitation.
I am concerned, in amendment No. 181, about a court-appointed deputy deciding whether an incapacitated person should take part in research that does not directly benefit P unless the court has conferred on the deputy express authority to that effect. I would welcome comment from my hon. Friend the Minister as to when she thinks it might be
Column Number: 281
appropriate for a deputy to make a decision about research on P's behalf, and whether she thinks that such an occurrence might be common.
Amendment No. 182 deals with my concern about clause 32(7). It is worth noting that the title of that clause is ''Consulting carers etc'', yet subsection (7) gives researchers the right to ignore what carers say are P's wishes and feelings—that P does not want to take part in research—and go to the Court of Protection to obtain permission anyway. That requires an explanation.
Given the absolute need to err firmly on the side of caution, if the researcher knows that P is unlikely to want to take part in research, my gut feeling is that that should be the end of it. I would welcome hearing what my hon. Friend thinks about this, and in particular whether she thinks it likely that a researcher would go to the Court of Protection to get permission to undertake research on P if that researcher knew, as far as possible, that neither P nor P's family would like to take part in that research. That is an extremely important question.
I would like my hon. Friend to give us the benefit of her thinking on these probing amendments.
Mrs. Browning: I support the amendments to which the right hon. Gentleman has spoken. I have huge reservations about this section of the Bill. I am not totally opposed to people who lack capacity participating in research that benefits a third party, but the question of giving permission, and who gives it and in what circumstances, must be absolutely watertight. I share his concern.
My concern is that all too often the medical profession is terribly gung-ho about research and that sometimes it is difficult for people to feel that they are getting a genuinely independent second opinion. Particularly for the person giving permission, the medical detail and the science behind it might not be fully understood. As a rule, we still tend to take it on trust that what is being suggested is right. That is especially the case when somebody is an in-patient; I am thinking in particular of when P is an in-patient. There are feisty old things like me who always challenge and question, but probably not enough of us do so.
In the medical profession, second opinions have not always necessarily been independent. They have often been based on the old-boy network; people have relied on someone they know to give them an endorsement. Therefore, the Bill should contain checks and balances so that the person acting on P's behalf—whatever the relationship—has the opportunity to ensure that the advice is truly independent.
I support the two amendments tabled by the right hon. Member for Coatbridge and Chryston. They are intended to strengthen this part of the Bill, about which I have grave concerns. I have a horrible nagging feeling in the back of my mind that if we do not get this absolutely right, for all the reasons that have been given we will open the door to situations that we will find unacceptable. We are dealing with somebody who
Column Number: 282
has lost capacity and with regard to whom any treatment, therapy or invasion will be for somebody else's benefit. That is not a bad thing in principle if we can place our hands on our hearts and honestly say, ''If that person had capacity, they would say yes,'' or, in this case, the person acting on their behalf would say yes.
I want to raise an issue about the next of kin. Often, people lose capacity during their stay in hospital; they may be compos mentis when they go in and then lose capacity while they are an in-patient. When they are admitted, they are asked not about all the detail that we have before us now but, ''Who is your next of kin?'' That is what they write down on a hospital admission form. However, the next of kin may not be the person who will ultimately be consulted under the terms of this legislation. Therefore, it is quite possible that the next of kin may have a view—and, I assume, may still have a legal view—on P, but that they may not be very much involved in this type of decision-making.
The next of kin may be a frail spouse who is unable to visit regularly but still has capacity. They may be in a residential home. That is particularly the case with regard to elderly couples: when one goes into hospital, the other might be in residential care but cannot visit. Legally, they may be the person who should be consulted, but they will not be around.
10 am
I wonder how the hospital would get right the balance between the next of kin whose name had been written on the admission form and some other person who would then appear. If the other person had to appear on P's behalf, it seems only right and proper that they should get the right authority to make decisions, give P's view or sanction things to happen on P's behalf. The issue worries me considerably.
|
