| Previous Section | Index | Home Page |
Mr. Dalyell: Is the hon. Gentleman likely to oppose the Bill that will be presented by my hon. Friend the Member for Mitcham and Morden (Siobhain McDonagh) on 3 February? Does he recollect that the Conservative party used to have very different views? I presented a ten-minute Bill on 18 May 1971. As usual, hon. Members filed out of the Chamber, but one colleague who remained to hear what I said was the then Prime Minister, Ted Heath. Two days later he told me that he was sympathetic to my cause but that I would never persuade Keith Joseph. What is the Conservative party's position, a third of a century later, on presumed consent?
Mr. Lansley: I understand that the hon. Member for Mitcham and Morden (Siobhain McDonagh) will present a ten-minute Bill and I try, whenever possible, not to oppose leave to bring in a Bill. If it makes progress, we would then consider it substantively. The implication of my views is, however, that I would also oppose her Bill on principle at Second Reading, if we ever reached that stage. I would also oppose the introduction of presumed consent to the Bill before us. That is a personal view, although I think that it is shared by my hon. Friend the Member for Westbury (Dr. Murrison), who is in his place on the Front Bench. It is an ethical point of view: we believe that presumed consent is inconsistent with the principle that we should allow people to decide themselves whether and for what purpose their bodies and organs are used. The Minister made the same point.
I do not pretend that my view is the uniform view of the Conservative party. We may discover later that my right hon. and hon. Friends have different views—
Mr. Kenneth Clarke indicated assent.
Mr. Lansley: I look forward to hearing that argument, because I know that it will be presented as effectively as an argument can be.
I hope that in the next three weeks we can provide an assurance to those who have suffered in the past that it will not happen again—as the Minister said. I hope that we can allay the many concerns of those who believe that excessive burdens might be imposed on medical research, education and training as a result. I hope that we can legislate for a regulatory structure and that we can be reasonably certain that normal practice in health care will not develop over time so that the bureaucratic compliance requirements of the legislation are met, but the substance of what was intended is avoided. We would do better if some of the changes that I have mentioned were included in the Bill, so that we focus on
the substance of giving informed consent and understand the emotional implications of doing so, especially for the loved ones of those who have recently died. I hope that we can also ensure that if there are those who treat human tissue negligently or maliciously, the regulatory structure will ensure that they cannot continue to do so for years, as happened in the past. On that basis, I hope that the House will give the Bill a Second Reading, with the intention of being appropriately critical during subsequent consideration.
Mr. Deputy Speaker (Sir Alan Haselhurst): The opening speeches have taken a little longer than anticipated. No time limit was imposed on Back Benchers' speeches, but we may now have a difficulty with time. It would be appreciated if hon. Members tried to be as concise as possible.
3.5 pm
Mr. Frank Dobson (Holborn and St. Pancras) (Lab): I welcome the Bill, for which I must take some responsibility. I met the Bristol parents and listened to their arguments, and I decided to establish the inquiry into what had happened to their children. That set in train the process that revealed the extent and nature of the massive holdings of human tissue across the NHS. It struck me in those meetings that while the Bristol parents were concerned to find out what had happened to their children, they also wanted to ensure that arrangements were put in place to prevent it from ever happening again. That needs to be the theme of today's debate.
The Bill seeks to update, codify and clarify the law on the retention of human tissue by health professionals for the purposes of research and training. It is based on the concept that those professionals should be required to obtain the informed consent of the individual whose body parts may be used, or their parent, parents or representatives, in place of the practice in the past, when health professionals sought simply to demonstrate the lack of objection. We must not pretend that the process of securing consent is simple or easy for anyone involved. A patient who faces a dangerous operation may be reluctant to hear questions about what should be done with their body if the operation fails. The professionals involved may also, for obvious reasons, be reluctant to put such questions. If someone has been seriously injured in an accident and then dies, the doctors and nurses may be exhausted, upset and disappointed that they failed to save a life. They will not be in a good state to approach distraught and heartbroken parents or other relatives. We can discuss the Bill in the cool, calm and collected atmosphere of the Chamber—at least, it is this afternoon—but that is not always the situation in hospital for patients, relatives or professionals.
We owe it to all concerned to get the law right and, above all, to make it clear and easy to understand for those who will have to operate it. We should not forget that we propose to introduce criminal sanctions if they fail to comply with the law. We should do our level best to keep lawyers out of hospitals, except when they are there as patients. We need to make the law clear, so that
it can be understood by those who have to implement it in difficult circumstances, day after day. We also need to try to keep down the bureaucratic burden.At the same time, we do not want to inhibit the use of human tissue for training and research. Health professionals need to be trained to understand the workings of the human body, and some of that understanding can be obtained only by studying parts of the human body—an organ or piece of tissue—from the inside. That is less necessary these days, because of technological change, but observation of diseased specimens, for example, is still crucial to the proper training of health professionals.
I have real concerns about several threats to medical research. The Bill could be a threat to medical research if we were to get it wrong, but I do not think that we will do that. The animal rights lobby is clearly a threat to some research on animals that is intended to benefit human beings. The combined impact of rather frightened ethical committees and the data protection law already seems to be inhibiting several epidemiological studies.
We cannot over-emphasise the importance of medical research on human tissues for the rest of us. For a start, such research helps us to identify specific illnesses and conditions. After such conditions are identified, the research enables professionals to understand their causes, and it is only after the causes are understood that professionals may come forward with a basis for the prevention or treatment of conditions. Medical research saves lives and relieves pain and suffering, and we must remember that it has gone on since time immemorial—from the Greeks studying anatomy to William Harvey discovering the circulation of the blood.
I have a more recent example of the benefits that can flow from research. We are faced with variant Creutzfeldt-Jakob disease, but the variant form of the disease was discovered only because of the post-mortem examination of the brains of people who had suffered from it. The later discovery that the disease was probably linked to bovine spongiform encephalopathy in cattle—although that is not certain even now—was possible only because of the post-mortem examination of brains. That evidence led to the enhanced slaughtering of cattle, which we hope has reduced the impact of CJD on the rest of the population.
Such research is still going on, and requires the examination of not only the brains of those who have died from vCJD, but the brains of people who have died from classic CJD and other degenerative conditions of the brain, because comparing the two is one way of identifying specific characteristics that might eventually prove useful. If we are to deal with the condition, it is vital that we continue that research. Given those circumstances, it is necessary for relatives to be willing to allow the brains of their loved ones to be used for research in an effort to ensure that we prevent the condition affecting other people.
We intend to make the law clearer on tissue taken from the dead and to make it clear that informed consent is required. However, as the hon. Member for South Cambridgeshire (Mr. Lansley) said, we must ensure that such consent is wide and long-lasting so that
after it has been given, further research that was not mentioned when it was given may be carried out. I do not imagine that many people would object to that.The Bill also deals with the subject of tissue taken from the living. I understand that consent has not been required for the study of such tissue up to now. The examination, study and analysis of cancerous growths taken from people during the treatment of their cancer have transformed our understanding of genetic and other aspects of the process and progress of cancer, which has meant that professionals have become more able to treat cancerous conditions. That progress would not have been made without the study of human tissue. The Bill will require consent to be given for such activities in future, so we must ensure that it is broad and long lasting.
Few people know that samples of tonsils and appendices that were removed during routine operations have been held in slides throughout the country for decades. When I was Health Secretary, I was asked to authorise the study of the slides as an attempt to find out the prevalence of vCJD in the general population. If the material had not been held—it would otherwise have been discarded—such surveillance would not have been possible. We hope that the information that it provides will throw light on the progress of the disease because it has so far defied anyone's attempts to understand it. Will the Bill inhibit the retention of such material? I hope that it will not. I cannot possibly expect the Under-Secretary of State for Health, my hon. Friend the Member for South Thanet (Dr. Ladyman) to respond today to all the technical matters that I am raising, but we must consider them carefully.
I was struck at the time that the examination of that material was subject to decisions by local ethical committees—there are more than 200 in the country. The process was time-consuming and unpredictable, so we should contemplate establishing a national ethical committee—perhaps, although not necessarily, through the Bill—that could decide on the ethical provenance, if that is the right word, of such national schemes so that progress could be made quickly if it seemed it were necessary.
I have a further worry about the interpretation of rules on data protection by ethical committees. At present, programmes of the anonymous and totally unlinked sampling of blood and tissue exist as an attempt to establish the spread of HIV/AIDS. Some local ethical committees are concerned that such sampling could be contrary to data protection laws, so if that is the case we need the Bill to ensure that the data protection lot keep their noses out of it because the sampling is intended to benefit humanity generally. We must be clear about whether such a programme will be lawful if the sampling is anonymous. If the research is unlawful, society as a whole will be worse off.
I raise a further detailed issue with the Under-Secretary. If I were to go into hospital and a blood sample were taken as part of my treatment, I understand that I would not need to give consent for any research that its pathology laboratory might carry out during my treatment. However, pathology laboratories, in the pursuit of quality standards, rightly organise sample testing to determine the standard of their analyses. If a test is run on a person's blood sugar level, the laboratory
will examine a sample of blood sugar tests to check whether they are accurate. As such an activity would be research rather than treatment for a person's benefit, the Bill would require people to give research consent before the sampling could take place—I do not know whether that is the case but it is my interpretation of the Bill. We clearly do not intend for that to happen, so the Bill should make it clear that it will not.Professionals in my area are studying aneurisms that have burst and caused sudden death. There is little use in trying to study the aneurism of a person who has been the subject of an attempted surgical effort to keep them alive because it would undoubtedly be destroyed in the process. The professionals want to examine aneurisms that have been cut out of people's bodies during coroners' post mortems. As I understand it, the law currently says that a coroner can keep parts associated with the cause of death. If an aneurism was the cause of death, by keeping the tissue in which it occurred the coroner is doing something that is a straightforward part of their role. However, is relatives' consent needed to conduct research on aneurisms? How is that research to be carried out and how can we facilitate it?
There are a number of detailed points that we need to consider, and no doubt others will make them. However, my main theme is that the Government and the professions need to bang the drum about the merits of crucial research on human tissues if we are to continue make progress in treating people. We must not let the monstrous activities of Gunther von Hagens at Alder Hey ruin medical progress. We must not get too carried away. We need to get that message across because, like the Bristol parents, most decent people would he happy for parts of their own or loved ones' bodies to be used for research if they were asked for permission and were confident that it would be of benefit to everyone.
Willing consent is therefore a big step forward, but we must be clear about the aim of the legislation. We are introducing criminal sanctions in a difficult area, and there is a danger that we will inhibit research by placing too many bureaucratic restraints on people so that, as a result, they do not seek consent for taking tissue because it is simply too much bother. We need to avoid that consequence. As the Minister of State said at the outset, if we can create public confidence in the consent procedure and convince people that the research is worth while everyone will benefit. There are no party political differences about the Bill, and I hope that all the time available can be devoted to getting it right. However, more consultation will be needed with the Royal College of Pathologists, the Royal College of Physicians and others to try to make sure that we get the details right and achieve what we all want to achieve—a clear law that can be implemented by the people who are doing their job day in, day out, in difficult circumstances.
| Next Section
| Index | Home Page |