Human Tissue (Availability)

Julian Huppert Excerpts

Wednesday 23rd June 2010 Westminster Hall

[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.

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[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 need to look at where the responsibility lies for raising awareness. We as politicians are in this room debating the matter, so we are fulfilling our responsibility.

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.

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[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.

The hon. Lady is correct about interaction with the media. She may agree that one problem is the shortage of good science journalists, with a few honourable exceptions.

[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.