Human Tissue (Availability)

Mark Tami Excerpts

Wednesday 23rd June 2010 Westminster Hall

[Jo Swinson (East Dunbartonshire) (LD)]

The issue of making samples of human tissue available for use in medical research may seem obscure at first glance, but it has a huge impact on some of the other issues that we commonly discuss in this place, including the development of new medical treatments for common diseases, the safety of patients treated by the NHS, and the ever-controversial matter of scientific experimentation on animals. In today’s debate I shall discuss how increasing the availability of human tissue to the research community would be to our advantage, and shall suggest ways in which the Department of Health might help to make tissue samples more accessible.

I first became aware of the issue because of life sciences activity in my constituency. Glasgow is unfortunate in having one of the highest cancer rates in Europe, but that means that it has become a world-class centre of excellence. The Beatson research centre is based in my constituency, just outside Glasgow, and a new translational research centre is due to be built alongside it shortly.

The area is also a hub for other companies that work in the life sciences industry, such as the biomedical research company Biopta, which is based in Bearsden in East Dunbartonshire. Biopta uses fresh samples of human tissue to test new medical treatments before they get to the stage of clinical trial. Those tissue samples have been removed from patients during surgery and the parts not needed for diagnosis or therapy have been donated, with the patient’s consent, for use by researchers. Tissue is therefore not removed for the purposes of research; it is removed during surgical procedures anyway, most often to help in making a diagnosis, such as during a biopsy. A sample is taken, and in some cases an entire lump may be removed, but usually only a tiny amount of it is needed on a slide for diagnosis by examination under a microscope, and the rest is either incinerated or stored for use by researchers.

When I visited Biopta, the chief executive, David Bunton, explained the benefits of testing with human tissue. First, testing new treatments on tissue samples can help to protect those who volunteer as subjects in clinical trials from harm. I am sure that hon. Members have all seen adverts in newspapers, or perhaps in a doctor’s surgery or hospital, looking for people to give their time to participate in a study of a new medical treatment. Sadly, we have also all heard of clinical trials that have gone badly wrong, when people have become seriously ill; some have even died. By testing treatments on human tissue samples first, it is possible to rule out some potentially harmful treatments before they are tried out on human subjects in clinical trials.

Although there is no guarantee that a treatment that is tested on tissue samples and appears safe will not cause harm to a living person, currently the various techniques involving live tissue samples are the closest we can get to simulating the use of a particular treatment on a real patient. Basically all drugs are tested on human cell lines, but not all of them are tested on human tissue, whose reactions are closer to the behaviour of normal cells in the human body than cell lines in an artificial environment.

As well as posing a potential risk to the health of subjects, unsuccessful clinical trials also cost a great deal in time and resources. One of the biggest barriers to the development of new treatments for diseases is the huge costs and the financial risk involved in trialling treatments, as there is always a risk that they will not work. Many drug companies expect that nine out of 10 drugs taken forward will not reach production. That risk can never be eliminated, but the use of live human tissue samples can rule out some unsuccessful drugs before trials are carried out. That can reduce the costs.

Another reason for using human tissue samples is that it may reduce the need for experiments on animals. I shall touch only briefly on that point, but it is an issue on which many Members, like many of our constituents, feel strongly; other hon. Members may want to speak further about it. I accept that some testing on animals is still necessary for medical research, but of course we should pursue alternatives wherever possible, in line with the approach of replacement, refinement and reduction. Despite the benefits of tissue research that I have explained, vast quantities of residual surgical tissue are regularly incinerated as clinical waste. As a result, there is a shortage of human tissue samples for research.

Many of the diseases for which treatments could be developed by such research are common, and all hon. Members present for the debate will know someone who has suffered from them. Breast Cancer Campaign reports:

“There is a serious lack of access to breast cancer tissue available for breast cancer research. This access issue is hampering progress in breast cancer research: developing new treatments, finding the causes of breast cancer and discovering new breast cancer genes can only be achieved if breast tissue is available to scientists across the UK and worldwide.”

In this country one woman in nine will be diagnosed with breast cancer in her lifetime and 1,000 women and seven men die from it every month.

Another common disease for which no cure has been found is Parkinson’s disease, with which someone in the UK is diagnosed every hour. Researchers in the UK are looking to develop new drugs that could slow down, stop or even reverse the condition, and perhaps find a cure. According to Parkinson’s UK:

“A key challenge is that there is a shortage of human tissue, including intestinal tissue from the gut, available for research. There are then difficulties associated with obtaining it when it actually becomes available. We would therefore welcome any move to increase the amount of tissue which is retained for research purposes, including that which has been removed during surgery. For the first time, it would allow researchers to look at changes in parts of the body in people who are living with Parkinson’s.”

If tissue samples are to be used for research purposes, a number of things need to happen. First, the tissue donor needs to consent to the use of their tissue for the purpose of research. Secondly, tissue needs to be stored in an appropriate condition, and thirdly there needs to be a mechanism for making researchers aware of what tissue is stored where. As to consent, clearly it is important that patients should have the final say in how their tissue is used, but the current process for gathering consent is clearly not working. In a submission to the Academy of Medical Sciences, the Human Tissues Working Party, which includes a range of groups including the Safer Medicines Trust and Biopta, wrote:

“Respect for patients’ rights and wishes must always be paramount, and current regulatory requirements are very good at ensuring that anyone who may not wish to donate their tissues does not do so.”

However, the submission continues:

“The widespread desire amongst members of the public to contribute to medical research in this way frequently goes unfulfilled because many potential donors are not made aware of the possibilities of donation. The situation is often exacerbated by what is widely viewed as a complex and time-consuming bureaucratic process, time constraints amongst staff, a lack of appreciation amongst hospital staff of the importance of high quality tissues.”

[Mark Tami (Alyn and Deeside) (Lab)]

The hon. Lady has hit on the key point: often people are just not asked. As with cord blood, for example, I think that if the uses of the tissue and the benefits that can come from it are explained, people will say yes. However, people will generally be asked at a vulnerable time and may be nervous about what is happening and why, and that is an issue that should be addressed.

[Jo Swinson]

The hon. Gentleman is right. Often people are not asked, and the timing of the request is a question to be considered.

There is little public awareness of the need for live tissue, and it is fair to say that most people would never think of proactively offering to donate tissue samples for research. As the hon. Member for Alyn and Deeside (Mark Tami) has said, that is not uppermost in the mind of someone approaching a surgical procedure. Therefore, we need to ensure that patients are routinely asked whether they would like to donate.

Currently, it is up to each hospital trust to design and implement its own policy for gaining consent. Before a patient undergoes surgery, he or she will always be asked to sign a consent form giving the hospital the right to operate, and that would also seem like a good opportunity to ask for consent for the use of their tissue for research. Indeed, many hospitals do that, although many more do not.

Last year, I submitted a freedom of information request to every acute trust in England and every health board in Scotland, asking for a copy of their surgical consent forms. I found that, in England, 39% of hospital trusts have an option on their consent form for patients to donate tissue for research but that 61% do not. In Scotland, the situation is even worse—29% of health boards include it on their consent form, but 71% do not. Of those trusts that do not include the option on the form, some said that they had a policy of requiring their staff to ask patients verbally for consent; but others told me that they do not take tissue for research purposes at all.

The situation in Scotland is slightly different. Although the Human Tissue Act 2004 applies in Scotland, the Human Tissue Authority is responsible north of the border only for transplantation, not for regulating the use of tissue for research. However, the National Research Ethics Service is UK-wide, so I see no reason why procedures for gaining consent for the use of tissue cannot also be UK-wide; we would then have some consistency for those having operations, whether they live in Dundee or Doncaster.

The Human Tissues Working Party writes:

“Evidence suggests that the vast majority of patients agree to their surplus tissues being used in research. Moreover, they are equally happy for their tissues to be used by academic, biotech or pharmaceutical laboratories, as they understand that many players are required to bring new treatments to patients.”

Although no nationwide figures are available, research by the NHS Greater Glasgow and Clyde health board shows that only 5% of surgical patients in the area were being given the option to donate residual tissue. One way to increase that figure would be to standardise surgical consent forms across the country, ensuring that the option is always included. I discussed the idea last year with representatives from the Human Tissue Authority, but they argued that researchers and foundation trusts were likely to resent attempts to impose such a one-size-fits-all solution, as they all have different research systems in place.

Perhaps more importantly, the widespread view, articulated by the hon. Member for Alyn and Deeside, seems to be that when patients are about to undergo surgery, they may not be in the best frame of mind to make decisions about how their tissue might be used. They receive a great deal of information at this stage, including legal and medical information, which may be overwhelming; on top of that, they will understandably be nervous about undergoing surgery. Surgeons may also find it inconvenient. A surgeon at one London hospital told the Safer Medicines Trust that surgeons simply do not have time to explain to patients the benefits of donating tissue and simply tick the “no” box on behalf of their patients.

The Greater Glasgow and Clyde health board is taking a great interest in the matter, thanks particularly to the efforts of Professor Barry Gusterson at the university of Glasgow. It says that pre-surgical assessments could present the best opportunity to discuss the question with patients, and is now looking to make that standard practice. There is the potential, with IT developments, for patients checking in for pre-surgical appointments to be given information about tissue donation, and the opportunity at that point to click a box on the screen. However, we need to ensure that patients have information about what will happen to their tissue if they give consent. The health board has produced an information leaflet for patients that explains how and why tissue is stored by researchers, and for how long. That is a brilliant example of how information could be disseminated. I shall send the Minister a copy, and suggest that she share it with hospital trusts in England, Wales and Northern Ireland as an example of best practice.

The Scottish Government are working with schools to promote the benefits of joining the NHS donor register, giving information to young people about how the register works, and offering real life stories about people who have received transplants and the new lease of life that they now enjoy. A similar scheme could be developed for use throughout the UK to make people more aware of the research need for surplus surgical tissues.

In the longer term, we might even aim to reach the stage where hospital staff and the public are so well-informed about the need for surplus tissue for medical research that a system of presumed consent could be implemented. That would, of course, need to follow a national education campaign to explain the benefits of research on human tissue.

The debate about whether consent for organ donation should be opt-in or opt-out has been the subject of heated debate in this place. Indeed, my friend Dr Evan Harris, the former Member for Oxford West and Abingdon, introduced a Bill that would have brought in a system of presumed consent; under it, people would have to have opted out of it if they did not want to donate organs. In that case, of course, the debate was about organs for transplant rather than tissue for research purposes, which is slightly different, but we are still talking about measures that could save people’s lives. Personally, I would favour an opt-out system for tissue taken from live patients, as it would be less controversial; certainly, taking tissue post-mortem is more complex. I would welcome the Minister’s views on whether we could review the Human Tissue Act 2004, and whether the opt-in, opt-out question for live tissue samples might be considered.

The Department of Health carried out a review last year of the impact that human tissue legislation has had on the research community. It found that:

“the majority of participants report that human tissue legislation and subsequent regulation by the HTA had a negative impact on the research sector”.

That, of course, was not the intention of the legislation. The drive to ensure ethical practice is commendable—indeed, it is vital. However, 68% of respondents believed that it has made human tissues harder to obtain, and 61% believe that it has led to the disposal of potentially valuable tissue. Clearly, the use of human tissue for research must be subject to careful regulation to ensure a high standard of ethical practice, but that evidence suggests that the legislation may need to be reviewed.

Once consent has been granted and tissue has been removed, the question is how and where it should be stored in order to ensure that it is available for use by researchers wherever it is needed. Most tissue is stored in hospitals, and it can be difficult for researchers to find out what tissue is stored in which hospitals in various parts of the country, so that they can gain access to types of tissue that they need. There are more than 100 tissue banks in the UK, some publicly funded and some private, but scientists’ access to the tissue is seriously affected by its location—and their personal contacts—and some institutions are more willing than others to share their tissue stores.

Breast Cancer Campaign is in the process of setting up the first national tissue bank for breast cancer researchers in the UK. It will have a policy of equal access for researchers throughout the country. It is being funded through voluntary donations. As well as national tissue banks, there is another option for improving access to tissue samples; creating a database or online system would allow researchers to see what tissue there is and where, and to make requests for it. The national cancer biobanking organisation onCore has tried to set up a virtual network of tissue banks to share tissue with researchers across the country, but it has had limited success.

I maintain that the problem is not one of funding. Primarily, we need better co-ordination and implementation of the processes that need to be implemented, as well as greater awareness among health professionals and members of the public about the importance of human tissue research. Far too often, valuable tissue is incinerated rather than being collected for research purposes, even though collection is not difficult. It is a matter of spreading best practice, giving information to hospital staff and patients and making the gaining of consent part of the routine of surgical operations. When tissue is collected, it is not being made sufficiently accessible to researchers. I hope that the Minister will tell us whether the Department of Health is able to facilitate greater co-ordination across the NHS, and among academic and research institutions, to improve the sharing of information and clinical material such as human tissue.

I am sure that all hon. Members will agree that we should be doing all we can to speed up research into treatments for the diseases that I have mentioned, and the many others that I have not. I look forward to the Minister’s response.

[Mr Russell Brown (Dumfries and Galloway) (Lab)]

I attended this debate not intending to speak, but I congratulate the hon. Member for East Dunbartonshire (Jo Swinson) on securing it.

I wish to talk about the terrible condition of Parkinson’s disease. Yesterday evening I was making my way home and called my wife, as I routinely do. She informed me that a family member and good friend of ours, who is on holiday in Malta, had suffered an aneurysm, and is on a life-support machine until her family can get to her later today. I have known the lady for many years, and I know that she wants her organs to be donated to medical science, but tragically, she is hundreds of miles away from her family. That quickly brought home to me the fact that we need more research, and that more organs need to be donated to allow research to go ahead.

Parkinson’s disease, as we all know, is a terrible, debilitating condition. Every hour, someone in this country is told that they have Parkinson’s, and, if anything, the situation is getting worse. Parkinson’s UK is an admirable organisation doing its utmost to battle against the condition. Since 1969, it has spent over £45 million on groundbreaking research. At the start of the year, it was supporting 90 research projects worth over £15 million. Parkinson’s UK believes that it should be made easier for researchers to gain access to donated organs.

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.

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[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.

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—

[Mr Joe Benton (in the Chair)]

Order. The intervention is too lengthy.

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[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.

--- Later in debate ---

[Mark Tami]

Further to the comments of the hon. Member for Cambridge (Dr Huppert), the problem is that the tabloid press provides a twisted, simplistic view of science, but the scientific press is too detailed and writes and speaks in a language that ordinary people do not understand. We need somehow to get a balance that crosses those two divides.

[Anne Milton]

I thank the hon. Gentleman for his intervention; he is absolutely right. I agree with the hon. Member for Wakefield—I call a sperm a sperm. The hon. Member for Cambridge strayed into areas that are way beyond me, but such matters are important. I welcome him to the House. At the last election, we lost a number of scientists and it is extremely important to have voices such as his in the House to inform journalists, particularly if there is not sufficiently extensive scientific journalism out there, although I am not in any position to judge on that matter. Such issues are important, and perhaps we should all take the opportunity to send a copy of this debate to our local press. That will perhaps highlight the issue of organ donation locally; we all have our responsibilities.

The issue of consent was raised. Legislation in that area was reviewed following revelations about the widespread retention of organs and tissue without the consent or knowledge of families, as the hon. Member for Wakefield mentioned. The Human Tissue Act 2004 makes it clear that consent is required for the storage or use of organs and tissue for research, whether they are taken from people during their life or after death.

As was mentioned, we know from talking to patients and their families that the vast majority of people are extremely supportive of tissue research and, when asked, will happily consent to their tissue being used. However, my colleague the hon. Member for East Dunbartonshire is rightly concerned that we should not waste opportunities to tap into that incredible good will. She suggested the use of generic consent for the retention of tissue, which could be sought at the same time as consent for other medical procedures—for example, surgery or a diagnostic biopsy. I entirely agree that people should be given the opportunity to donate tissue, but consent is not a straightforward issue.

I am not sure that a top-down approach is the best way to proceed with dealing with the matter. The good practice we seek cannot be imposed from the top, and history is littered with examples where a top-down approach simply somehow relieves professionals of their responsibility; they believe that they are no longer responsible for the matter. Increasingly, we find that organisations are tailoring their consent procedures to local needs; for example, there may be specialist clinics, where specific risks can be addressed. We are aware of successful and innovative approaches that have led to greater efficiency and a better experience for the patient or person. Innovative thinking must be encouraged and not constrained. I am often concerned about the latter happening with anything that takes a top-down approach.

[Anne Milton]

As with many things, it is a matter of balance. I heard my honourable colleague’s words about what the Department of Health must do. I do not know whether the Department of Health holds the solutions in this case. I really believe that the matter needs to be dealt with locally. Anyone who has first-hand experience of routine procedures knows that they can be quite unsettling for people. Most people about to undergo surgery are understandably nervous. The hon. Member for Alyn and Deeside expressed his visible concern about donating even blood. I suggest that he comes to see me afterwards—I will give him a talking to and get rid of his nerves.

We are dependent on the professionalism and humanity of health care professionals around the country, and we can draw on their experience to find the right time to discuss tissue research. Dealing with the issue is a question of trust—trust in the relationship between clinicians and patients, trust in local health organisations to provide the right information to people, and trust in health professionals to maintain the separation between treatment and research.

My colleague the hon. Member for East Dunbartonshire mentioned the fact that it might not be convenient for a surgeon to seek consent for tissue donation. I would suggest that it is not necessarily a matter of whether it is convenient; it is about whether it is appropriate. That is the difficulty. It is also true that clinicians can duck the issue and find it difficult to talk about. That also needs addressing. However, I do think that the solutions lie with the organisations and the clinicians, and should not come from the centre.

[Mark Tami]

The hon. Lady mentioned the issues of trust and getting information across on issues such as bone marrow donation and stem cells. However, there is also the matter of getting information across to minority communities, where levels of donation are very low. If, for example, a child is diagnosed with a particular condition, their odds of finding a donor are very slim compared with those of a child from the white population. We need to get information across to people and educate them about what is being done.

[Anne Milton]

I thank the hon. Gentleman for his intervention. It is interesting that this is the first time that we have referred to the differences between ethnic groups, and that is an extremely important matter, but there is a resource out there that we do not necessarily use, which is the faith leaders in communities, who can perhaps raise the issue. That is why we need to send tentacles out, perhaps even from this debate, to ensure that we get the messages across in many different settings. We mentioned children; perhaps the issue should be talked about in school.