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To be usable for research purposes, the brain must be harvested within 24 hours; however, all too often there are obstacles to that. For example, hospital staff are often reluctant to harvest organs without a death certificate-rightly so, on occasion. When someone dies over the weekend, there is often no one available to sign a death certificate, meaning that the organs, including the brain, cannot be harvested before they deteriorate and become totally unusable. When that happens, Parkinson's researchers miss out on resources vital to
developing better treatments and a cure. It also means that the wishes of the deceased, including those carrying donor cards, and their families simply cannot be followed. Parkinson's UK is therefore calling for guidance for hospitals on the importance of harvesting organs, including the brain, quickly-within 24 hours-to avoid those obstacles. It also calls for greater public awareness of the importance of donated organs in medical research-an issue that the hon. Member for East Dunbartonshire raised.
The brain is the principal organ affected by Parkinson's, and it is due to the death of specialised nerve cells in specific areas. However, the condition can also affect other parts of the body. There is emerging evidence, which the hon. Lady touched on, that early pathological changes found in the brain may start in the gut. The condition may actually start there and then spread to the brain. Much more research needs to be carried out in that area to investigate what is happening.
Parkinson's UK funds a brain bank that makes it possible to look at changes that have happened in the brain once a person has passed away. However, it is also necessary to look at other organs, from people with and without Parkinson's, particularly when they are alive, if at all possible. That would make it possible to correlate a person's symptoms with any specific changes within the body; that is as important as looking at cells. A key challenge is the shortage of human tissue, including intestinal tissue from the gut, that is available for research. When it does become available, all too often there are difficulties associated with obtaining it. Parkinson's UK would welcome a tissue database, as it would enable researchers to locate tissue more easily, thereby obtaining maximum benefit from it.
Mark Tami: Does my hon. Friend agree that we need the media to address research properly and to explain why it is being done? Too often, particularly in the tabloid press, we see headlines like "Frankenstein science", and stories on experimentation for the sake of it, which has never been the case. Such language further undermines the likelihood of people giving consent; they would be more likely to do so if they were fully up to speed with why research was being carried out.
Mr Brown: I thank my hon. Friend for raising that point because I was going to come on to that issue. He made it abundantly clear that, regrettably, on too many occasions much of what we encounter day to day, especially in this arena, is driven by media hype and scare stories. His point is spot on. As the hon. Member for East Dunbartonshire said, the situation regarding presumed consent and everything surrounding it is delicate. New Members and those of us who were here previously will encounter over the coming months and years a significant amount of correspondence from people who are deeply concerned about organ donation and the provision of tissue. My hon. Friend the Member for Alyn and Deeside (Mark Tami) is right: when we tackle issues such as this one, we have to have open, honest and sensible adult debate, not driven by hype that, frankly, terrifies people.
I do not wish to say much more in my short contribution. Suffice it to say that the debate is very important indeed, and even that is probably an understatement. I
have covered Parkinson's disease, and I would like the Minister to address the issues surrounding that, the tissue database and how we overcome problems. I suspect that they occur too often, when the harvesting of organs needs to be dealt with very quickly-within 24 hours. How can we handle that better to ensure that we meet the wishes of those who want to give organs at the end of their life to save the lives of others and for research? Making that decision was a significant step for those individuals and we should do whatever is humanly possible to make it easier to respect their wishes.
Dr Julian Huppert (Cambridge) (LD): I congratulate my hon. Friend the Member for East Dunbartonshire (Jo Swinson) on securing the debate. She briefly mentioned animal testing and I would like to pick up on that theme to start my comments. It is clear that further medical research is needed, and I have a background in that area. We heard movingly from the hon. Member for Dumfries and Galloway (Mr Brown) about Parkinson's, and there are other areas where much greater research is needed, for which one needs some form of human-based model. That has led to the widespread use of animals for experimentation, which leads to concerns-ethical and practical.
The ethical concerns centre around how we should treat animals. While that is important and I very much share the deep concern, it has on occasion led to some extreme positions, which I do not think anyone in the House would support. There are sensible approaches to balancing the need for medical research, which leads to experimentation, with trying to avoid such experiments. I would like to highlight the Fund for the Replacement of Animals in Medical Experiments, which does a very good job in this area. It describes its position as anti-animal experimentation:
"FRAME believes that the current scale of animal experimentation is unacceptable, but recognises that the immediate abolition of all laboratory animal use is not possible. Essential medical research must continue, so that effective treatments for diseases that lessen the length and quality of human and animal life can be found. New products, including medicines and vaccines, and industrial and agricultural chemicals, must be adequately tested, in order to identify potential hazards to human and animal health, and to the environment."
That nicely sums up the balance, and explains why we need to continue with this research. FRAME then goes on to say that it advocates the three R's approach-replacement, reduction and refinement. As an aside, I notice that it is very traditional to use the three R's whether we are talking about reduce, reuse and recycle or reading, writing and arithmetic.
There is a great deal of misunderstanding about animal testing. There is an idea that medical research organisations and pharmaceutical companies want to do animal testing, when in fact most of them would much rather not if alternatives were available. That might be for financial reasons if nothing else. A lot of work has been done to find different ways to test and develop new techniques. I am talking about work on humans, animal models and tissue. Recently, we have seen the idea of human on a chip, in which samples of different human tissues are put on a very small chip so that system interactions can be studied. There has also been work with stem cells and their derived tissues. There has been work in vitro and, increasingly, in
silico-trying to use computational methods to work out what is likely to happen without having to perform real-life experiments-in which I was involved before I was elected to this place.
There are disadvantages to all those ideas. Testing on humans is risky; one has to be very careful about any intervention. We know that there have been some sad instances of severe illness and death when humans have tried out new therapies and medicines. We know that there are problems with animals; they often do not provide exactly the right systems. Drugs behave differently in some animals to the way that they do in humans. A lot of work has to be done on systems such as human on a chip, and most of the computational techniques still have a long way to go before they can truly be said to represent what is going on.
I do not want to breach the Haldane principles and suggest what research should be funded, but the topics that I have mentioned would be very interesting for the appropriate bodies to look at rather carefully-whether that is a funding organisation such as FRAME or the National Centre for the Replacement, Refinement and Reduction of Animals in Research. Support for such areas would be very gratefully received and would make a huge difference to many people.
Today we are talking about tissue, and tissue has a huge amount of potential. It occupies a very nice space in the hierarchy, between in vitro and in silico models and full humans with all the attendant risks. A number of tissue banks have been set up, including the UK Biobank. A large number of brain banks have produced some very nice work, typically post mortem, leading to results on Parkinson's and Alzheimer's. I shall mention, in particular, the Cambridge brain bank partly because it is in my constituency and partly because my mother was involved with it-as a researcher rather than as a donor. We should try to broaden the spread of these banks and create a proper network. Some of the brain banks have had problems with interacting with other banks and with transferring data. Things are also going on in this area with cancer banks. My hon. Friend the Member for East Dunbartonshire mentioned onCore, which is a national cancer biobanking organisation, and we need to have other such organisations.
There are issues not just with how we collect the samples and store the information, but over funding. Currently, there is not a viable commercial model for tissue banks or networks. From what I have heard, the banks have great difficulty in securing long-term funding. Banks cannot survive on project-based funding, because the value derives at the end of the process and not at the beginning, so there is a need for core funding to support such a network. They have to have a certain level of security.
Let me turn to the topic of consent. We have heard some discussions about whether we should have an opt-in or opt-out system. It would, I believe, be a great step forward if we decided on the opt-in model. If people were asked to opt in, we would see an increase in numbers. I would be concerned if we went to an opt-out system for tissue. There is not public acceptance of that, and I would prefer to get lots of people opting in.
The topic of organ donation was also raised. It is my strong belief that it should be on an opt-out basis, and I would have supported the Human Tissue Bill proposed by Dr. Evan Harris, the former Member for Oxford
West and Abingdon. Why is there a difference between the two? One reason relates to public acceptability and the other to timeliness. While we benefit from having a larger and more thorough bank of information, individual instances of information missing are not critical; it is a general problem, but not a critical one. With organ donation, organs are individual lives, and there is a specific issue of timeliness. As my hon. Friend the Member for East Dunbartonshire mentioned, in the future we will be able to have an opt-out system for tissue. It will be nice to see a real acceptance of the benefits of research for everybody in this area.
There are also issues about the ease and clarity of consent. The advantages of a national system and how easily it can be established have been discussed. There are also questions about how much information should be stored with tissue, and that needs further thought. Should the data be anonymised? Should it be tied in to medical histories and to details of other phenotypes that were observed-other interactions that happened? Should it be tied in with a DNA profile from that tissue?
On that cue-I find it very hard not to talk about DNA as that is what I used to work on-let me say that there is an interesting asymmetry in the Human Tissue Act 2008 between DNA and tissue in terms of whose consent is required. The Human Tissue Act, which regulates tissue, stipulates that there is a hierarchy of consent before a tissue can be obtained from somebody who has died. Although we are mostly talking about tissue samples from those who are still living, post-mortem tissue is incredibly valuable as well. A spouse can refuse permission to use a tissue sample even though the benefit may accrue to those relatives who are biologically related. With DNA, there is no hierarchy of consent, and any relative can consent. Typically, the people who are asked are those with a genetic relationship. That gives rise to some interesting asymmetries, because it means that different people could be consenting for different aspects, whereas the DNA would typically be derived from the tissue. That will lead to problems in the future and we need to consider it. In general, DNA and the future of DNA technology and testing will be a topic that requires further thought from this House. It may be an appropriate topic at some stage for a debate such as this.
There have been a lot of drives for improvement as the cost of sequencing has plummeted-from costs in the order of billions for the first sequence down towards the £10,000 mark and heading very rapidly towards the £1,000 mark in the near future. That means that we are starting to see more and more projects in which everybody, or every baby at birth, is being sequenced. We will see some real effects on health-I hope that the Minister will be able to comment on some of those-both in research angles, through genome-wide association studies, and in areas such as personalised genomic medicine. I am sure that the Minister is aware of the House of Lords' Select Committee report on the subject. Schemes are ready to be cascaded down through the NHS. For example, free foetal DNA testing allows Down's syndrome screening at a very early age-at about six weeks into a pregnancy. A pinprick of blood is taken and the RNA is then sequenced. It is amazing that we can do that, and such a scheme is ready to go through the NHS in a matter of a few years.
In conclusion, let me support my hon. Friend and urge the Government to take action to support this work because it is in the interests of science and research, of reducing animal experimentation and of patients.
Mary Creagh (Wakefield) (Lab): It is a pleasure to make my first outing as the shadow spokesman for public health under your chairmanship, Mr Benton. I congratulate the hon. Member for East Dunbartonshire (Jo Swinson) on securing such an important debate. Having listened to her this morning, I feel that I know a lot more about the subject. She is well known in the House for her campaigning work on this issue. Her early-day motion 212, which she tabled in the previous Parliament, attracted the support of 64 hon. Members, and I am sure that a version of the same early-day motion will make its appearance through the course of this Parliament.
It was interesting to hear about the hon. Lady's strong constituency link with the subject. I was certainly unaware that her constituency was a hub for research into life sciences. I also want to congratulate her on her tenacity. Using the Freedom of Information Act to get the data on the hospitals is the work of someone who pays great attention to detail. In fact, she found that there are huge differences between hospitals. It might be interesting to drill down into the information that she has to see whether there are geographical differences, or differences between foundation trusts, in respect of how samples are collected. The challenge for Ministers is to try to get everybody up to the level of the best, and it is clear that there is a very long way to go to achieve that.
I congratulate the Minister, who has responsibility for public health, on her appointment. She has been in a shadow public health role since July 2007. She had a distinguished career in the NHS for 25 years, including working as a district nurse. She also worked in hospitals, in research and, of course, in palliative care, so I am very interested to hear her comments in this debate. Furthermore, she is possibly one of the very few Conservative MPs who has served as a trade union steward, for the Royal College of Nursing, so I will also be interested to hear whether she has any response to yesterday's Budget. We welcome her, and her experience, to her new post. Her direct experience of front-line working in the public sector will no doubt stand her in very good stead.
I also want to congratulate the hon. Members who have contributed to today's debate. I know that my hon. Friend the Member for Alyn and Deeside (Mark Tami) has a very strong interest in the subjects of cord blood and stem cell research; we have debated those issues together on many occasions. He raised a very important point about the general altruism that the public feel.
Most people want to make their own contribution and help to contribute to medical science. Unfortunately, however, the level of knowledge and debate on these types of issues is very low. Part of that is due to the "ick" factor-none of us likes to think of our precious bodies as, first, dying; secondly, being cut in any way, even after death; and, thirdly, being kept in a large fridge with medical scientists examining them. But in
fact the reality is that that is how human progress, particularly progress in science, has been made for generations, even centuries.
I also congratulate my hon. Friend the Member for Dumfries and Galloway (Mr Brown) on his contribution to the debate. I send my condolences to the family of his friend who suffered such a terrible tragedy while on holiday and I wish them courage as they fly out to Malta.
My hon. Friend raised the very important issue of the practical barriers that exist in this area, even when hospitals systematically want to collect people's brains after death. There are also the issues of the death certificate and the conflict that exists between the medical side and the research side. The hon. Member for East Dunbartonshire has really hit on an important issue here, which requires some constructive and creative thought.
Mark Tami: I thank my hon. Friend for her very kind comments. There is just one point that I want her to address; I am perhaps returning to the point that I made earlier about how we and the media view this issue. She knows that my particular interest in this area is with the Alder Hey hospital and with children-unfortunately, that interest derives from a personal experience. But the fact is that a lot of medical conditions, such as sarcomas, particularly affect children; indeed, in some cases, medical conditions only affect children.
Given that children are particularly affected by some conditions, it follows that the research into those conditions must focus on children, but we find such research difficult to accept. It is very difficult to accept research on adults, but research on children, which sometimes very unfortunately happens as a result of a child's death, is even more difficult to accept. However, it is something that we really need to address. As I said, some medical conditions only affect children.
Mary Creagh: My hon. Friend makes a very important point. Actually, this is one of those issues where the answer of the child involved might be very different from that of a parent. I think that children can be incredibly wise.
Speaking as a mother, the thought of one of my children dying is beyond comprehension, or beyond the limits of my imagination. It would be wrong for someone to ask for a donation from a bereaved parent who was dealing with that level of stress and grief. The time for asking for donation is not at the point of surgery or of death; it is when people are feeling generous and altruistic, when they feel that donation is something that can help other people.
Actually, children themselves are incredibly generous and incredibly thoughtful. Obviously, it is different for babies and toddlers, but children from about the age of six or seven can start to work these things out for themselves. Perhaps there is a role for education in the classroom to get children to talk more seriously about these issues.
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