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I know that the work that the Anthony Nolan Trust has done in increasing the number of people on the bone marrow register is incredible. In Huddersfield and Wakefield-my constituency covered part of Huddersfield until the last boundary change-we had a very brave
campaigning journalist at the Huddersfield Examiner who, when he was dying in his mid-20s, launched a huge campaign, including writing a blog about his experience. Through that campaign, he engaged with a lot of young people to get them on to the bone marrow register.
The issue of donating tissue, or blood marrow, is a bit like that of blood donation. I have spoken to my staff about it and said, "The blood lorry is outside, off you go". There are responses such as, "Well, I don't fancy rolling up my sleeve and having someone stick a needle in me". However, if I ask, "If you have an accident on your way home, or your child is ill, would you want blood for your child or yourself?", the answer of course is, "Yes". The time to do it is during a tea break or a lunch break from work and not when people are under stress and dealing with a huge range of emotions.
I also congratulate the hon. Member for Cambridge (Dr Huppert) on his contribution to the debate. It is clear that science has lost a great researcher, but science's loss is certainly the House's gain. While he was speaking, I had a quick look on my BlackBerry and perhaps after the debate he can explain to me what "nucleic proteins" are, or whatever it was that he was researching-I am not even sure that I have used the right word there-because I got lost after about the first sentence of his contribution.
Computational biology is clearly an emerging area of work in this field and the hon. Gentleman spoke very eloquently about its potential to reduce the need for experiments on animals and, in some cases, to replace high-risk human trials, which would be welcomed by all parts of the House. He also leaves us with the interesting image of a "human on a chip", which is something that I will go away and reflect upon.
Using his own experience as a researcher, the hon. Gentleman raised the important ethical issue of the anonymisation of samples, and he is absolutely right to do so. Certainly, in any research that I have ever participated in, I have always been told that the donated material will be held completely anonymously and untraceably. Now, however, we are moving forward with this biobank. I was invited to take part in that project. I went along because I was interested and I asked, "Are more women than men coming along?" I was told that, yes, there were, so there were all the usual biases that exist. We come back to the altruism factor and it seems that women tend to be more altruistic than men. I will leave that point hanging; if anyone wants to intervene on me, I am happy to argue the point. [Laughter.]
Mark Tami: My hon. Friend is exactly right. Men are certainly less willing to become stem cell donors and bone marrow donors, because we are cowardly and do not like needles. That is a particular problem.
What we must do with bone marrow and stem cell research, as the work of the Anthony Nolan Trust shows, is to put fewer obstacles in the way of donors. When it comes to giving blood, I know from my own point of view that my reaction is really, "Argh"-giving blood really terrifies people. However, mouth swabs can be used to donate other material. If we can get people past that first stage and if they are then approached because they are a potential match, I think that people will say, "I am a potential match and therefore I will go to that next stage and give blood". If we somehow phase people by saying, "You've got to give blood and you must have various tests for things", then people are less likely to come forward.
Obviously, with bone marrow and stem cell donation, we are not talking about people who have died. It is one of the few areas where someone can save a life by giving something. It is not painful, it does not take that long and someone can actually save somebody else's life. There are tens of thousands of people out there who do not even know that they are potential life-savers. This issue is not only about how we raise awareness, but how we-
Mary Creagh: Thank you, Mr Benton. I was listening with interest and totally agreeing with my hon. Friend. Most of us will not have the chance to save someone's life in the normal way. The chance to be an everyday hero does not come to many of us, and most of us do not have the medical skills that would enable us to be one. However, a person can undergo a small surgical procedure to take bone marrow out of their hip, and someone else will be walking around as a result of their generosity to another human being. I find that profoundly moving.
We have heard of the difficulties that the media create in their coverage of these issues, some of which have been difficult. The Alder Hey and Bristol Royal Children's hospital cases were seen as national scandals, and rightly so, but the scientific community has a huge responsibility in this area. This country has a problem with science. We have a framework that enables us to be world leaders in life sciences and all kinds of areas, and we have a population that is willing to run marathons, to do fun runs for breast cancer and cancer research and to work and raise money. Yet there is a gap.
Presumably, every one of the women who participated in the five-mile fun run in Wakefield-the race for life-did so because they knew someone who had died of or suffered from breast cancer. All those women could have been offered the chance to be screened for blood marrow donation or to talk about tissue sampling. The world of fundraising needs to work more closely with the world of research. I do not know how that would happen, but I think that the scientific community, whether it is researching genetically modified foods, cancer or Parkinson's, has its own responsibility. However, it has not found its voice in this area.
We have an image of scientists working in their labs in white coats. It has been a long time since I have been in a research lab, so I do not know whether they still wear those coats, but they do not get on the telly. We tend to hear about sensational breakthroughs, but when we read the small print, we find that they are at least five, six or 10 years away. There is media sensationalism about what might be small steps at the beginning, yet no real conversation about the long, arduous and painful work that scientists have to go through to achieve a breakthrough. I agree with the hon. Member for East Dunbartonshire that there is not enough access to tissue samples, but there are difficulties at the interface between the two worlds.
My hon. Friend the Member for Alyn and Deeside mentioned cord blood collection. The Royal College of Midwives has specifically said to its members, "We do
not want you to be distracted by cord blood collection while you are trying to deliver a baby." Obviously, anyone who is assisting at a birth wants a happy baby and a happy mum. The cord blood thing comes much farther down the line. Certainly, that was my experience of giving birth, and I believe that it is probably the experience of most medical professionals.
The scientist is not in the room saying, "By the way, make sure you get the cord blood, and make sure you put it in the fridge quickly." If a midwife is dealing with a baby that might be in respiratory distress or a mother who is in the middle of a haemorrhage, all other considerations rightly go out of the window. The midwife wants a safe delivery, and the researcher stands in the university lab and weeps as the precious cord blood heads off with the placenta to the incinerator. I do not know whether people still take the placenta home. I certainly was not interested in that; we are back to the "ick" factor.
There is a challenging conflict between the NHS professional who wants to deal sensitively with, for example, a cancer or Parkinson's patient, and the colleague back at the lab who wants to know whether they have consent to do lab work on the tissue samples. We have heard some interesting suggestions today about how the medical process can support the collection of tissue. Most hospitals have introduced MRSA screening prior to surgical interventions, and that would be a good way of doing it.
The national patient care record-a national database with everyone's details-is another possibility. The patient could sit with their general practitioner and go through organ and tissue donation. The information could be there in black and white on the computer screen for every medical professional who deals with them at any stage of their life. The decision could also be revoked at any stage.
Dr Huppert: As the hon. Lady knows, there has been a great deal of concern about uploading data. I hope she agrees that if what she is discussing is to happen at all, a huge amount of data safety and security, and a simple mechanism whereby people can opt out, will be needed. Ideally, they would opt into such a system, rather than being given a limited opportunity to opt out.
Mary Creagh: I agree with the hon. Gentleman. I know that Liberal Democrats have an antipathy to the national patient care record and have called for it to be scrapped, but it might represent an excellent opportunity to deal with this matter. Of course, people would have to opt in, and nothing I have heard today changes that.
The hon. Member for East Dunbartonshire asked whether people would opt in or opt out. We need to go back and look at consent, which is at the heart of this debate. As we have heard, the Human Tissue Act 2004 created the framework for the removal, storage and use of tissues and organs of the deceased.
We must remember the circumstances that gave birth to the Act. It came about because of public inquiries into the events at Bristol Royal and Alder Hey hospitals, where organs and tissues from children who had died had been removed, stored and used without consent.
Scientists have been doing that for generations. I do not think that there is any question about that, and we can understand why they want to progress medical research. However, years-in some cases, decades-later, families discovered that the children who they thought they had buried had not been complete.
The series of moral, ethical and religious issues that came out of that practice had to be, and were, addressed by the Labour Government. The inquiries together with the Isaacs report, which focused on the retention of adult brains following coroners' post-mortems, revealed that storage and use of organs and tissue without proper consent was commonplace. We as legislators had a duty to change that.
The chief medical officer concluded that the law needed to be changed. We had a wide-ranging public consultation, "Human bodies, human choices", which set out proposals and led to the Act that created the Human Tissue Authority, which licenses and inspects institutions. The Act is based on the principle that consent should be given by the living. If that key principle is to be changed, it must be changed with a great deal of consent. I do not detect a groundswell of public opinion or hon. Members in this House wishing to reopen the consent issue, despite the efforts of Dr Harris, the former Member for Oxford West and Abingdon.
Jo Swinson: In the context of the legislation, I agree with the points that the hon. Lady makes about consent being vital. However, would she accept that the current problem is that many people would be happy to consent, but their wishes are not being fulfilled because they are not even being asked?
Mary Creagh: Absolutely. The hon. Lady makes a valid point, and systems, policies and processes are the only way. It is not laws or our passing Acts in Parliament that will make it happen. This is about the 60% of trusts that do not collect any form of tissue, but get rid of everything. It is about people being made aware-there is an educational side to this-and it is about having a system in place. If we want people to donate their organs, we have to make it as easy as possible, so that they can do it when they open a bank account or go to Boots pharmacy to pick up a prescription. Whatever it is, it has to be made easy.
Most people hope throughout their lives that they will not need a huge amount of surgical intervention. That is what we all hope for, is it not? I believe that the hon. Lady is right that most of those who are unfortunate enough to have repeated operations would like to help other people through medical research.
It is important to say that lifetime consent for a tissue sample is already possible under current legislation, and people may give "generic and enduring" consent for their own sample, but the hon. Lady may be trying to bring to the foreground lifetime consent for any medical research purposes. However, the law in such areas cannot and should not stand still, and we must renew the working of the existing law.
I was interested to hear the hon. Lady's reference to the Human Tissue Authority's evaluation of perceptions of how the legislation and regulations that flow from it have affected researchers. The Human Tissue Authority has said that it wants to ensure that researchers have
access to high-quality samples by consolidating stocks throughout the sector; that brings us back to the idea of banks. It also wants to reduce the regulatory burden on the research sector by using open-ended rather than fixed-term licences, and moving to a risk-based approach to regulation rather than regulating everyone.
The hon. Lady will be interested to hear that the Nuffield Council on Bioethics is consulting on options for boosting the supply of organs and human tissue. It is clear that a problem is emerging as fertility sciences improve. There is a shortage of organs for transplant, as many hon. Members have said, and of sperm and eggs for donation. I prefer to refer to "sperm" rather than "gametes", not least because I do not know how to pronounce that latter word. Let us call a sperm a sperm.
Transplant patients and women seeking fertility treatment may travel abroad, often to places where different rules apply or, in the case of organ donation, where there may be an illegal market. We must watch that carefully because moral and ethical considerations may be involved if inducements are offered, whether cash or paying funeral expenses for people who give their organs. Those are some of the issues being debated, and the consultation closes on 13 July. I put that on the record so that any hon. Members who want to participate in the consultation may do so.
New stem cells made by reprogramming adult tissue into induced pluripotent stem cells-iPS cells-which come not from human embryos but from adult skin cells, have been possible only since 2007, so science is already well ahead of legislation in this area. The iPS technique could lead to new breakthroughs for Parkinson's disease, motor neurone disease, diabetes and paralysis, and that would obviously be very welcome.
Mark Tami: My hon. Friend referred to breakthroughs, and stem cells are one of the major areas where breakthroughs are happening. However, we must remember that much research comes to a dead end. Sometimes when we believe that it is going a long way, it does not. The Daily Mail and the Daily Express may say that drinking coffee prevents cancer, and also that it causes cancer. There is no "one size fits all" or one magical cure, so we must go down many routes, knowing that some will be a dead end.
Mary Creagh: I agree that there is no silver bullet, much as we would like one, and my hon. Friend is right about the red tops' approach to eating-or not eating-yoghurt, strawberries, blackcurrants or whatever fruit or drink is fashionable. It would be impossible to live our lives by their diet rules, certainly in the House of Commons Tea Room. We need to understand better, and the hon. Member for Cambridge has a responsibility to his former colleagues in Cambridge to be a champion and an advocate in this place-he has already proved in this debate that he will be-in respect of the benefits involved and the management of people's expectations.
I understand where the research is coming from. The hon. Member for East Dunbartonshire said that researchers are a bit cagey about sharing with other researchers where tissue is held. Someone doing a PhD who has put three or five years of their life into it does not want someone else from a different country or different research institution publishing six months before them; let's face it, academics are as competitive as the rest of us. I know
from my experience at Cranfield School of Management that we loved sharing our research at conferences, but we lived in dread of someone coming up with the same idea and publishing it a bit sooner. It is incumbent on researchers to work out ways and methods of sharing their research in this area.
Dr Huppert: The hon. Lady is making an important point. A lot of work is taking place on open-access data and open-access publishing with the safeguards that she correctly requires, so that people who have invested a lot of time and effort-for example, in building up a bank-get first priority. I hope that she is aware that many of the research councils are increasingly mandating that data should be made openly available.
Mary Creagh: I thank the hon. Gentleman for that intervention. I was not aware that the research councils were making open access mandatory, but logically it is right that that should be done. Researchers enjoy taxpayers' money, so it is right that it should be shared for the common good. Most historic scientific breakthroughs have been made through people sharing building blocks with each other, rather than through working in splendid isolation.
The hon. Gentleman is right about science journalists. There is a paucity because they may make two, three or four times as much money working for a big pharmaceutical company. Writing for people who may not be interested or who may even be openly hostile to science may be less alluring than working for a big pharmaceutical company and being at the heart of breakthroughs.
The Human Tissue Authority website is incredibly useful in listing establishments that have human application, research application, post-mortem application, anatomy licences and display licences. I had not realised that the display of human bodies was regulated, but that was controversial a few years ago.
I hope that today's debate will lead to solid proposals from the Minister. I look forward to hearing what she has to say. We must tread carefully if we are to maintain public confidence in these vital areas and public trust in the medical research community.
The Parliamentary Under-Secretary of State for Health (Anne Milton): I welcome the debate, and congratulate my honourable colleague the Member for East Dunbartonshire (Jo Swinson) on securing this debate. Although we are not great in number, clearly the matter is important to some people, and this has been a brilliant opportunity to have a good run-around with some of the issues. My honourable colleague has worked extremely hard to promote the supply of quality tissue for research, and to encourage closer co-operation between everyone in the sector. If nothing else, the debate has highlighted the need for much greater co-operation.
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