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Baroness Hayman: My Lords, it is always a pleasure and a privilege to follow the noble Lord, Lord Walton of Detchant. It is also something of a relief to be sitting where I am rather than in the place occupied by my noble friend the Minister today; that is, in the position where he will have to respond to the noble Lord on some of the very important issues that he and others have raised in the debate. That is because there are issues of real concern that have arisen not out of a desire to curtail research, but out of the well founded wish to ensure that the rights of patients and the proper respect due to human tissue both post-mortem and ante-mortem are honoured. There are also concerns that, inadvertently, significant damage will be done to medical research in this country.
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I should declare an interest as chairman of Cancer Research UK. In my latter years I have fallen among researchers, but my interest in the health service and commitment to issues of this kind did not stem from a research background. Initially I came to the health service as a consumer representative, a patient representative on the maternity services liaison committee of a district health authority. I also had the privilege of being the first lay member of the Ethics Committee of the Royal College of Obstetricians and Gynaecologists, as well as serving for many years on a local research ethics committeea pioneer of its kindat UCH and UCL under the chairmanship of Professor Desmond Lawrence.
I do not seek to minimise the very real dilemmas that can arise out of individual areas of research when trying to balance the interests of the community as a whole, patients in the future and the individual patients who will be affected by a particular piece of research. These are real and difficult issues which I believe must be tackled on an individual basis. The proper place for examining such issues is in the detail of research ethics committees, in particular when we are considering tissue taken from living individuals.
I understood the words of my noble friend the Minister when he said that the Bill introduces a comprehensive regime, one that will deal with tissues both post-mortem and from living individuals. Moreover, we all acknowledge that the Government have made good progress in terms of residual tissue. But I seriously worry whether adopting such a comprehensive approach is beneficial in this regard.
I say that because enormous problems were encountered in relation to post-mortem tissue, which have been eloquently described today by many who have had to deal in a pastoral capacity with the families affected. I believe that the regulatory framework had become completely out of kilter with social and ethical expectations; patients' attitudes had changed. The attitude of "least said, soonest mended" that was acceptable in the 1950s and 1960s was simply not acceptable in the latter years of the 20th century. We saw how that framework could cause great distress even in circumstances where people did not behave inappropriately or against professional standardsalthough, sadly, in some cases this did occur.
I welcome the fact that we are updating the whole framework. However, I am concerned that in trying to do so in a comprehensive way, as my noble friend described, we are applyingcertainly this was true of the Bill when it first started lifea one-size-fits-all solution to vastly differing circumstances, and that we are, in many respects, overemphasising concerns about the appropriateness of consent and issues such as anonymity, especially in relation to living and residual tissue.
I believe that when we refer to informed consent we should pay as much attention to the information as to the tick in the box on the consent form. Information for patients and information for the public is tremendously important; it should not be given only at the time when a piece of tissue is likely to be used or to go into a tissue bank and so on.
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We have a great deal more to do to inspire public confidence in medical research. We can do so by explaining the regulatory framework; by explaining how ethics committees work; by explaining how professional self-regulation works; and by explaining how professional standards are upheld. The greatest protection for patients will not come from what we do in this House but from high standards of individual professional behaviour in the medical and scientific community. We must do all we can to engender that.
Information is tremendously important when people are being asked to consent. The giving of that information is an ongoing process and it is something to which I hope, in its short life, the HTA will address its attention. It is important that there should be overall education on these matters.
The issue of anonymity has been eloquently described by many noble Lords in their distinguished contributions. When consent has been dispensed with in respect of residual tissue, I cannot see the logic in saying that the counterpart has to be anonymity. I can understand and support the fact that approval from a research ethics committee has to be in place. I also believe that appropriate measures about confidentiality should be put in place in those circumstances. But I fear that the fetish about anonymity could cause tremendous damage to important pieces of research which are in the public interest, and perhaps in the interest of individual patients, without giving any additional protection whatever to the patient.
We sometimes lose a sense of proportion on these matters. Anyone who works in a hospital sees terrible breaches of confidentiality all the time. I had the misfortune to be in an A&E department with a member of my family some six months or a year ago. Apart from the fact that you could read on the board the names of everyone who had come in and their supposed diagnosis, I ended up knowing more about the drug-taking habits of the young man who had come in slightly after us than I would ever have wished to know or he would have wished me to know. When I was on a post-natal ward, I knew about the future contraceptive behaviour of the neighbour in the next bed, because curtains are not good barriers to auditory communication. One constantly heard all sorts of things that breached confidentiality.
We need to address those sorts of issues. We should not say that it is inconceivable in any circumstances for researchersvery well regulated, it is to be hoped, by their own professional standardsto be able to make connections that could be crucial for the research in which they are involved and for future health and discovery. That is the key. I agree absolutely with appropriate confidentiality, but I think that blanket anonymity is the wrong way forward.
I look forward to discussing these issues at what will obviously be an animated Committee stage. If the end of the 20th century saw the death of deference, it is important that we do not allow the beginning of the 21st to see the death of proportionality and common sense.
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Baroness Murphy: My Lords, first, I should also like to express my gratitude for the very warm welcome I have received from all sides of the House. As a political and parliamentary novice, it has exceeded my hopes and aspirations. The induction programme which we are now given has truly been a great help. I commend it to those of your Lordships who have not had it in the pastit is really very good.
I have also made terrible mistakes already. I thought at one point that the noble Lord, Lord Marsh, was going to ask me to dance, but he was merely pointing me in the right direction towards where I should be standing.
I know that it is customary on an occasion such as this to demonstrate one's wit, but the Human Tissue Bill does not naturally lend itself to wit in any but the worst taste. I think it was Marilyn Monroe who said, "I don't mind making jokes, but I don't want to look like one". So I fear that the House must wait for another occasion for my Victoria Wood impressions.
Rather as the noble Lord, Lord Newton, was put on early hoping to be late, I have been put on late when I was hoping to be early. Many of the points that I wanted to address have been very eloquently covered already, so I will be brief.
I welcome the Bill in its recently amended form. I think that there is now a sensible balance between protecting the rights of patients and their families and the need to safeguard good clinical practice and research. I want to highlight what a mess the current legislation is.
I spent a good many years in clinical and academic research practice with mentally incapacitated older people, trying to devise ethically sound ways in which to conduct research into their disorders and also to enable post-mortem neuroscientific brain research. I particularly welcome the guidance on consent for use of materials post-mortem. In the absence of legal clarity, my teams and I had to devise a scheme and operate in practice broadly what is now proposed. I can tell your Lordships that it is eminently practical and will be generally welcomed by clinicians and relatives. Further clarification will be needed, in regulations and the code of practice, particularly when we come to the Mental Capacity Bill but, overall, it is workable, and I believe that it can be made to work clearly. At the moment, we do not have that clarity.
As chairman of a strategic health authority, I am very pleased to see the amendments that protect clinical education, training and research use of tissue that is incidentally removed during investigations or surgery and which would otherwise be discarded. I think that that is very helpful.
Before mentioning three matters which I believe need further scrutiny or to be addressed in regulations, I shall comment on the impact of the passage of this legislation through Parliament. After the Alder Hey story broke, which noble Lords will remember was a direct consequence of the Bristol babies inquiry, there was much resentful talk in hospital corridors and canteens of how the whole profession was being
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unfairly blackened by the behaviour of one over-zealous, cavalier pathologist who was perceived to be at the dysfunctional end of a spectrum of clinical practices which, at best, were designed to protect relatives' sensibilities and, at worst, were casually thoughtless.
Since then, the climate of professional opinion has been broadly won round to supporting the Bill. That is in part due to the leadership of the senior officers of the Royal Colleges of Pathologists and of Paediatrics and Child Health in particular, but also, crucially, due to the debate about the culture of professional practice that has been stimulated by the passage of the Bill through Parliament. That has been a very good thing.
I turn briefly to three matters that remain unresolved in my mind. First, having listened to the Minister's introduction, I am not quite clear about where we are in relation to coroners' practices. My understanding of the Bill was that coroners' activities would be excluded and would be looked at later, perhaps in response to the recommendations of the third Harold Shipman inquiry, which were published last week. I am now simply not sure whether I am reading the Bill in the right way. I am told by Professor James Underwood, who I know has briefed many noble Lords here today, that not all coroners follow the existing good practice, published by the Chief Medical Officer in 2001, in relation to consent for retaining and using tissue in research after it is no longer required for post-mortem. There is still a large hole in the Bill that needs to be addressed much more clearly. I hope that we shall have an opportunity to clarify those rather vague areas.
The second matter is the so-called "altruistic" genetic testing and other testing that is carried out on mentally incapacitated adults. It is carried out not for the patient's sake, but generally for the benefit of other current and future family members. I understand that the interpretation of the patient's best interests will be addressed in regulations. It will be crucial that those regulations weave seamlessly with the forthcoming Mental Capacity Bill. Some of those tests can be extremely uncomfortable, but they may be highly important to the family's interests. Very often, those incapacitated adults would want to participate in a process, whether painful or not, that would assist their relatives. Dr Ainsley Newton, a genetics ethicist from Imperial College, has provided me with some very challenging case examples which will need to be looked at very carefully by those who draw up the regulations.
The third and final matter is anonymity; that is, the requirement on a researcher not to possess any information which might identify individuals to whom tissue belongs and the relationship between the individual's best interests and the best interests of public health. However, such eloquent examples were cited by the noble Lord, Lord Winston, the noble Baroness, Lady O'Neill, and the noble Lord, Lord Walton of Detchant, that I shall not labour that point, save to say that unless this matter is cleared up, we will be in grave danger that the Bill might preclude the kind of excellent research that they described.
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To conclude, the Bill addresses complex aspects of human biology and medical practice, which are undoubtedly difficult to draft into practical legislation without risking unintended adverse consequences. Overall, the Bill is in good shape, and the minor difficulties are surmountable without trespassing on its fine purpose. It will be a fitting memorial to the Bristol infants' brief lives.
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