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The Lord Bishop of Portsmouth: My Lords, I hope that what follows is an appropriate contribution to this preliminary debate on a Bill that this Bench strongly supports. It is good to have the prospect of three maiden speeches from such distinguished contributors. If I may single out one, it was a close friend of mine and colleague at Manchester University, Professor Barnabas Lindars, who had the privilege of teaching the noble Baroness,
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Lady Neuberger, and was present at what I hope it is appropriate for a bishop to regard as her ordination as a rabbi. I mean that with the greatest respect.
I shall begin with a story, a true story, that illustrates one aspect of the downside of things as they stand at the moment, which reflect specifically what the Isaacs report of 2003 revealed in general terms as all too common and regrettable practice. Like some of what we shall be deliberating on later, it relates to areas of human experience that are not always easy to describe or digest.
A priest was taking a funeral in south London a few years ago and found to his horror that the body, revealed when the casket was opened in church, had had two polished shoes neatly placed at one end attached to no legs, which were unaccountably missing from the corpse.
I use that story to show that it was inevitably the pastoral side of the Alder Hey and Bristol Royal Infirmary inquiries that most exercised my colleagues and their clergy in Liverpool and Bristol although, of course, they and my other colleagues on this Bench were and are also concerned about the intrinsic issues. What were the local clergy to do when the family asked for a second and even third funeral for the same child, whose body parts, thought in all innocence to have been buried at the same time as the child, were emerging, one by grisly one, from the hospitals in which it had died? It is very hard to speak those words without emotions running quite deep.
What was being said about who or what a person was, if full burial rites were to be repeated in that way? Who exactly was being buried each time? Yet, pastorally, how could grieving families be denied what to them was an essential recognition of, and closure with, the wrong done to their children? Clearly, such situations should not be allowed to arise again. The way to prevent them is to ensure that consent is always obtained before tissue is removed, retained or used. The ethical principle being brought into play here is that of respecting individual autonomy.
The Bill before us bases itself on this principle and fully recognises the autonomy of individuals by requiring explicit consent for post-mortems, other than those required by the coroner; for the removal of tissue for research or transplant; for the use of cadavers for anatomical examination and for their public display. The Bill rightly requires consent for all those uses and rightly requires accountability and transparency in their use, together with penalties for their abuse. Those are all ways of showing respect for the living by finding out individual wishes and for the departed by honouring those wishes after they have died.
I was glad to hear the Minister's reassurances about the Department for Culture, Media and Sport's plans over the repatriation of human remains. It will need to handle this with some care in getting across the meaning behind those actions to the public, as with other aspects of the Bill. Those include the questions rightly raised by the noble Lord, Lord Clement-Jones, particularly in relation to mental capacity. I wish to
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express my appreciation for the exception clause relating to religious relics, particularly on behalf of the Roman Catholic community.
In conclusion, let me address the question of autonomy as an ethical principle. The ascendancy of autonomy as overriding in medicine can put a stranglehold on good practice and be a block to important research. Although I fully support the principle of respect for each individual, and his or her very particular wishes and needs, I would always argue strongly for us all as individuals to seek and to serve the common good. Where respect for autonomy turns into a selfish demand for "my rights" or is translated into a set of regulations that cannot be flexible and responsive to circumstances, which change as we all know, and which are as particular and unique as individuals are, then the language of rights must be adjusted. The need for research, training, education, clinical audit and quality assurance, alluded to by the Minister at the beginning of the debate and by the noble Lord, Lord Clement-Jones, are all very real and designed to serve the common good.
It was always an abiding concern that this Bill might overreact to the horrors of Alder Hey and Bristol and that those bad cases would lead to bad lawin the context of the many difficulties accruing to conducting research in this country due to regulations that already exist. But it is fortunate, and to be applauded, that the Bill has recognised the need for flexibility in precisely these areas and others; for example, by not requiring consent for the proper use of residual tissue from living patients. Therefore, I believe that the Bill manages to strike a balance between respect for autonomy and serving the common good. Although there may well be areas where we shall argue over various points of detail as the Bill passes through this House, I believe that this laudable and timely package, which is fully responsive to the nuances of our present circumstances, should be wholeheartedly supported.
Lord Newton of Braintree: My Lords, I wish to mention that I am chairman of the Royal Brompton & Harefield NHS Hospital Trust and simply to observe that, while that clearly gives me an interest, I would be the last to claim that it makes me an expert. I shall be very brief, for two reasons. First, the list is longer than anticipated therefore the House may welcome some brief speeches and obviously wants also to hear from the distinguished maiden speakers on the list. Secondly, I had not expected to find myself in this pole position in a debate with so many expert contributions to come. Bearing in mind the talent, medical and other, on the list, I had expected to listen, learn and support rather than inform, instruct and lead. My response, having anticipated a modest contribution at the end, will be to make a modest contribution at the beginning.
There is widespread support for the broad aim and purpose of the Bill, and there is no question about whether it is right to legislate in this area. The questions are about how far the Bill as it stands, despite the improvements, sufficiently achieves those
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aims and whether it does so with sufficient clarity to avoid replacing one set of problems with another. There remain some real issues, as has already emerged, despite the work that has been done in another place. In particular, there are issues about whether the Bill deals with the most common cause of the distressing experiences that are said to have led to its drafting without, at the same time, introducing unwarranted restrictions that could and probably would eventually harm public health and welfare.
I have an extensive briefing note from the president of the Royal College of Pathologists, Professor James Underwood. Given my position in the debate, I could ruthlessly plagiarise it and use it to make all the points that it contains. I shall not do that; I shall simply say that, having read it and bearing in mind the concerns expressed to me by pathologists at the Royal Brompton & Harefield hospitals, I am wholly persuaded that there will be much need for the detailed examination and amendment at which this House excels, particularly perhaps in respect of Schedule 1, on scheduled purposes, but by no means only on that.
I hope in due course to play some small part in the Committee consideration. Meanwhile, I propose straight away to defer to those better equipped to play a larger and more expert part, and to resume the posture of one whose primary purpose, as I have said, is to listen and learn. I look forward to listening to and learning from the noble Lord, Lord Turnberg.
Lord Turnberg: My Lords, I am grateful to the noble Lord, Lord Newton. I declare my interest as a one-time clinical scientist, current vice-president of the Academy of Medical Sciences and scientific adviser to the Association of Medical Research Charities. I look forward to no less than three maiden speeches. It says much for the attractiveness of the subject of human tissues that it can bring in such a bevy of excellent speakers on the last day of term.
The Bill has been improved enormously during its passage through the other place, not least due to a considerable amount of effort by Ministers and officials who have listened patiently to the scientific community and the medical patient charities. They are definitely a listening Government and long may they continue. The Bill is now much more balanced and offers realistic protection of the rights and interests of patients and their relatives, while allowing research of importance to future patients and the public to continue.
Of course the Bill is not perfect. There are a number of areas where clarification or amendment may be necessary. Perhaps I may highlight some of those areas, although I hope that we will have time over the long recess to consider them in more detail. The Bill very reasonably and rationally distinguishes between tissues and organs taken from dead bodies and samples taken from living patients at operationappendices, tonsils, cancers and the like. One might think that all that was needed in the Bill was a stringent set of regulations for post-mortem organ retention in
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response to the Alder Hey and Bristol scandals, and that the useful research of tissues taken at operation could have been left out of the Bill.
After all, if one wants to do research now on such tissues, one must always have ethics committee approval, and that will be given only where consent has been, or will be, obtained from patients, or where the tissues have been anonymised. I am sorry to use such an awkward term. We might ask whether we need the Bill to say more or less the same thing, while introducing an additional bureaucratic layer and some confusion about the exact meaning of the terms "consent" and "anonymity", which are confusing for ethics committees and researchers alike.
Everyone accepts that much important research is carried out on human tissues left over after operations, and I believe that patients and the public are generally content that tissues can be used for the greater good providing that certain safeguards are in place, such as ethics committee oversight and approval; a guarantee of confidentiality, so that no harm or embarrassment could befall them; and wherever possible that consent is obtained. My fears for research and teaching in the Billand I reiterate that the Bill has already gone a long way towards addressing many of my fears, but my residual fearsrelate to how "consent" and "anonymity" are interpreted.
"Consent" at one time could be taken in the restricted sense, as consent now for current, specific research. In many instances, however, the research could be undertaken years later and be of a type not envisaged at the time, and for which obtaining consent now is impractical. Can consent be taken to be enduring and of a general type for all types of research? We are given some reassurance on that, but it is not absolutely clear how it will be handled.
What about anonymity? Does that mean absolute anonymity, with no possibility of anyone ever being able to break the code? In many research programmes, it is necessary to link findings to tissues and to clinical details in particular patients, and you can do that only if you can find out who the patients are. Will anonymity be taken to mean absolute anonymity? We have heard some reassurance from the Minister, but we need to be absolutely clear on that. On whom will the interpretation at the time be dependent? If it is not possible to remove from the Bill tissues taken from living patients, and I suspect that it will not be, it will be the HTA that will be doing the interpreting. What criteria will it adopt, and what will the as yet unwritten regulations have to say about that? There is much free-floating anxiety in the scientific community and among patient groups about how this will play out. I hope that we will have further clarity on this issue.
Then, there is the question of the High Court being asked to make a judgment on whether public interest is of such overwhelming importance as to outweigh the interests of an individual who cannot give consent. When we dealt in the Health and Social Care Act with the use of data or information about patients used for research where it was not possible to obtain consent, we set up the Patient Information Advisory Group to
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make such judgments. I wonder whether that type of arrangement might be seen as less legalistic and expensive than the proposal to take such cases to the High Court.
A number of other aspects of the Bill deserve attention. The section on DNA research, to which the noble Lord, Lord Clement-Jones, has already referred, needs to take account of other types of genetic research such as RNA, karyotyping and the like, and the problem of how to separate education and training for research from education more generally when those are treated separately and differently under Parts 1 and 2 of Schedule 1. No doubt those and other issues will provide many happy hours of thought and discussion over the coming months.
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