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8.50 pm

Lord Winston: My Lords, I find myself in a slightly strange position. That is partly because I am speaking for the Opposition but when the Opposition were in Government we produced the reply to this Select Committee. As a member of that committee, I would like to say how grateful I am for the remarkable chairmanship of who I hope I can call my noble friend Lord Patel and the expertise of that committee in general. I am also grateful to Professor Aitman who is a colleague of mine at Imperial College, and to the wonderful clerks on the Select Committee.

I hope that it is in order for me to say what a privilege it is to be speaking opposite the noble Earl, Lord Howe. I have not yet had a chance to congratulate him on his appointment as a Minister. It is only fair to tell him that on this side of the House he is greatly respected and admired at the Dispatch Box. His general approach to difficult areas of medicine has been quite remarkable.

The noble Lord, Lord Patel, started by talking about single-gene disorders, because clearly that is one area where this kind of medicine has an immediate impact. It is worth bearing in mind that there are around 6,000 single-gene disorders. These are defects in the printing of a gene that can make for a serious, often fatal, disease, quite commonly in very young people and usually in young children. These diseases are truly frightening and when they affect families they are very serious indeed, with the exception of one or two, such as colour blindness.

Of course, the problem is that many of those 6,000 genetic diseases have different printings in the DNA. For example, the biggest single-gene defect is one in the dystrophin gene which makes muscle, which is 2.5 million base pairs or so long. In the region that

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codes for the protein, there can be one of several hundred different printing defects that may give different versions of the disease, which makes genomic medicine not quite as easy as it sounds. That kind of problem is echoed constantly throughout genomics.

One of the problems is that, very often, there are misprints or changes in printing in the 3 billion pairs of letters, hence the important plea of the noble Earl, Lord Selborne, about the need for bioinformatics. My goodness, he is right. He is spot on. Without that computer information, it will be a very difficult job to untangle many of these things. That must be a key issue for the Government to consider as urgently as possible, because we need to be collecting that data. Some of our witnesses suggested that that might be more easy than perhaps was at first suspected. Dame Janet Thornton, for example, said, in response to the noble Baroness, Lady Finlay, during one of our sessions,

The idea that she could localise those kinds of services fairly simply is one that we need to look at in the health service which, it is fair to say, has been bedevilled with computer problems and difficulties with storing information in IT.

The noble Lord, Lord Patel, said also that the response of the Government was poor. I would be inclined to agree, although as a Front-Bench spokesman-however much as a guest-I have to be careful how I handle that issue. The response was not entirely poor. To be fair, one of the concerns, as the noble Lord pointed out, is that there have been massive developments, even in the past six month. That is one reason why some of the recommendations in this report that were rather poorly responded to last year might be worth revisiting-for example, the extraordinary speed at which we can now carry out genome sequencing, whereby we can measure not only the genome itself but the state of the genome. I want to talk about that again in a minute, because the state of the genome will be the key to some aspects of genetics over the next decade.

This is one of the most important genetic issues facing the NHS. There can be no more important subject in medicine than our genes. That is why the massive hype about the genome project was quite understandable. It was a gross exaggeration of Mike Dexter of the Wellcome Trust to say that the project was more important than the invention of the wheel, because 10 years later the wheel has not actually turned. When President Clinton talked about it in terms of our humanity, I would argue that we actually learnt more about our humanity from the 1599 copy of Hamlet, produced in London. We must have a sense of proportion, and that is very important for the Government when learning how and where they have to focus precious resources. I will come back to that.

None the less, the genome is an extraordinary issue in medicine. It is quite different from anything else, because essentially the genome does not deal with disease, but primarily with well people. That is where the information has to come from, and that is why it is rather different from most kinds of treatment. It is also the basis for pretty well every human disease.

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That is a curious paradox of a sort. The genome goes beyond just disease. It includes our well-being. It includes, to some extent, our status; we have hereditary influences in our genome which affect all sorts of human aptitudes. They are important in human society, and the genome will in time no doubt contribute to that when we understand it better.

The noble Lord, Lord Patel, mentioned the epigenome. I should like to explore that a little, because for some people it is a mysterious topic. It is extraordinary that the state of the genome-what is happening to the DNA at any one time; not the printing, which is what we measure in a sequence-is really important. Researchers are beginning to understand that it is of growing importance. For example, in this country we have an important centre at the University of Southampton. Work is continuing in other universities, at the University of Auckland in New Zealand, in Singapore and in the United States. It turns out, for example, that subtle influences on the DNA printing can decide whether or not that portion of the genome will actually work. That is what epigenetics is at least partly about.

Let me give noble Lords just one extraordinary example. A few years ago, a massive ice storm affected the eastern part of Ontario and just beyond. As a result, literally tens of thousands of power lines went down, there was a massive power cut, many people were left in darkness for up to six weeks, they lived in freezing temperatures and the temperatures outside were often minus 20. There were women trapped in their houses for six weeks; they could not use the telephone and they could not go out to shop. The interesting issue is that Michael Meaney, from McGill University, has shown that a number of women who were between 18 and 24 weeks pregnant gave birth to children who displayed quite significant differences some years after they were born. For example, their cognitive ability was different. We do not fully understand why that should be, but it was almost certainly modulated by the hormone cortisol, which occurs in times of stress, and it is probably an epigenetic effect.

As animal research grows, we see more examples of states which affect our well-being in all sorts of ways that are important in epigenetics. There are also other patterns of inheritance which are not just related to the DNA but involve possibly proteins, certainly micro RNAs and probably parts of the chromosome. This pattern of inheritance is difficult and we do not fully understand how generational it is-that is, over how many generations these changes may occur. The thought that you might change somebody in childhood, and that that change is then inherited by the next generation, is something that we need to concern ourselves with very carefully.

Drug development has been mentioned by a number of speakers. The key problem for the drug companies is that to develop a new drug costs around half a billion pounds. I have a good deal of sympathy with this and do not know how the Government should handle it. It requires many years of development to screen 5,000 or 6,000 compounds to find one that is of use. We know that there are specific drugs which clearly help individual cancer victims, but at present-as

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I know from sad personal experience-several people with cancer have visited units in the United States to get specific genomic treatment for their cancer. It seems rather sad that our own patients cannot get this treatment.

In other areas, the classic example is of a drug designed for asthma. Most asthma in children responds to a very common and cheap drug-salbutamol. However, some patients do not respond. It is thought that those patients can be picked out by research going on around the country in several different centres, and which might influence their chest disease. One should not forget that asthma can be a very serious disease-sometimes almost fatal in some children.

Several people, including the noble Lord, Lord Taverne, mentioned the Human Genomics Strategy Group. Given the rapid increase in knowledge, my noble friend Lord Warner's plea for a White Paper has a lot of merit. However, if there was a strategy group, its problem would be how to focus what it does and make it absolutely pertinent. To whom would it be answerable? How do you implement the effects, the research and the evidence that it takes? This kind of problem is always a difficulty for Parliament. I know my noble friend Lady Royall said that she might have struck lucky this evening; I am not sure that she has. My noble friend Lord Warner was rather kind as well but we will gloss over that rather quickly.

Preventive medicine, which was raised by the noble Lord, Lord Sutherland, is a key issue and almost the reason for this report. The problem is that preventive medicine in general has quite a chequered history. It has always been difficult, in practice, to find what you can prevent successfully. The noble Lord is right, but I am not certain about how we can best do that.

The work that is going on in Newcastle is, as the right reverend Prelate said, marvellous. It is a wonderful university, doing some fantastic work. Among other things, it does something key which is mentioned in the report in some detail-that is, public engagement. The Government's response to that is less than adequate. It is not sufficient just to add Sciencewise, much as I champion it. There are all sorts of things that we should be doing in schools and universities to promote better understanding of genomics. We should make sure that research councils and possibly even charities write into their research grant applications that there is some need to present this work in a way that is accessible to the public; and that we, as scientists, listen to the public's concerns. This is equally important and something that we must continue to emphasise.

As the noble Baroness, Lady Finlay, said, Cancer Research UK does wonderful work, but we should not leave this collection of data entirely to a charity. This poses a major problem for us. The Government must co-ordinate it; if not, we will be lost in the long term.

The noble Lord, Lord Colwyn, who I do not think is in his place, was rather kind to me as a guest spokesman. However, I see that he is sitting on the Woolsack, which makes him even more respected. He mentioned the breast cancer gene BRCA1. That research started in my laboratory, so I am rather proud of the fact that pre-implantation diagnosis, and what followed, has been widely adopted. The problem is that it has

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been very difficult to get the sequencing from NHS units because of the fragmentation of the NHS. Co-ordination across the NHS in this respect is still poor. We have to be rather careful about promoting the screening of embryos in general. Although it is interesting, to impose another clinical procedure on a developing egg may not be wise and could in time cause its own epigenetic problems. That is another reason why we need more research in this area.

I wish to make a few points to wrap up. The Government have a tremendously difficult job in this regard, as would any Government, and I do not envy them. The noble Lord, Lord Warner, referred to our implementation of MRI. I first put a rabbit in an MRI machine at Hammersmith Hospital in about 1975, before people were doing it with biological organisms, but it took some 25 years before we began to use MRI regularly with patients. However, it has been remarkably difficult until recently to get MRI scans done because of the colossal expense for the NHS. That is a massive issue. Moreover, common diseases of the genome are still very elusive. Heart disease has been mentioned, but mental illness poses another huge problem for the health service, as do degenerative disorders. Diabetes is particularly elusive in terms of its genome, but perhaps that will change. To some extent the prediction, at least, of cancer is still a problem.

In recognising genomics, we must not forget the need to continue with genetics. Some witnesses have tried to draw a distinction and argue that we should use only the term "genetics", and the Government have commented on that. I argue that we need to recognise that some of the research that we have to do, which must involve the animal model, particularly rodents, must be protected. That is often difficult to do, given the regulatory framework. It is possible, but sometimes not easy, to get through that, but young researchers may be put off that research. It needs to be connected up with our work on genomics.

I agree with what the noble Lord, Lord Kakkar, said. This report shows the Select Committee at its best. The committee members were clearly totally impartial, expert and willing to learn and work hard. Looking across the Chamber, I find it impossible to tell which members of the committee were hereditary Peers or what political affiliation they had, if any. We worked together as a team and showed exactly what the House of Lords is about and should be about. The report sets a good example and I am pleased to think that it might have influence outside this country.

Although we as doctors want to chase diagnoses, we must not forget that what the patient needs is treatment. There is a risk in all this of relying simply on the laboratory. We have to remember that the key skill for a doctor is less and less evident in the modern health service-the need to continue to listen to our patients.

9.08 pm

The Parliamentary Under-Secretary of State, Department of Health (Earl Howe): My Lords, I join other noble Lords in thanking the noble Lord, Lord Patel, for his excellent introduction to this debate, which was of particularly high quality and which was crowned by the coruscating contribution that we have

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just heard from the noble Lord, Lord Winston. It provides the new Government with the chance to hear, first hand, your Lordships' views on this important area of science-one that offers so much potential to improve the health of our nation, as we have heard.

The United Kingdom has a well deserved worldwide reputation for its work in the field of genetics-the study of individual genes-and now genomics, which is the study of the interaction between genes: if genomics is like a garden, genetics is like a single plant. It is now more than half a century since Watson and Crick published their research on the double helix, while this year marks the 10th anniversary of the human genome project. The sequencing of the human genome has not only revolutionised the way in which we view ourselves as human beings, but it has led to many practical benefits, including new medicines and diagnostic tools. Throughout, British scientists have been at the forefront of this groundbreaking technology. It is a technology that increasingly brings economic benefits, as well as important improvements in healthcare.

The inquiry by your Lordships' committee was thorough in its investigation and forthright in its conclusion, which was that this reputation, and the benefits that the science could bring, would be at risk if action were not taken to ensure that we remained at the forefront of genetic technology. The benefits are real-for patients, business and society. That is why the government response was a joint one from the Department of Health and the Department for Business, Innovation and Skills. That collaboration continues, ensuring that the UK is a place where technology and enterprise can flourish within a transparent, facilitating regulatory environment that encourages, not stifles, innovation. This includes eliminating obsolete and inefficient regulation. We want regulation to complement, not complicate, the way in which people work-not, incidentally, just in the UK but also at a European level. We will work with the EU to improve current guidelines and ensure that initiatives on research and regulation meet UK objectives.

As your Lordships' committee rightly said, the 2003 genetics White Paper recognised the potential impact of genetics and the genome project, as well as the importance of preparing the NHS to take advantage of these developments. These were laudable aspirations, and some advances were made in the diagnosis and treatment of rare single gene disorders, yet the accompanying strategy has proved incapable of keeping pace with the speed of change in this field-a point well made by a number of noble Lords. This inability to respond to a rapidly changing landscape means, as the committee rightly concluded, that doctors, nurses and other healthcare specialists are unable fully to exploit these developments for the benefit of their patients. Clearly, this Government want NHS patients to be able to access the best medical advances that genomics will bring.

As many noble Lords mentioned, the Human Genomics Strategy Group has already been established under the chairmanship of Professor Sir John Bell. Its remit is to develop strategic options for genomics in the NHS-that is, to work with the objective of ensuring enhanced patient services through the better use of

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advances in research and technology. We are fully supportive of the work of that group. The noble Lord, Lord Sutherland, made various proposals for the group's remit and I shall see that that remit and the development plan for the group are shared with the Science and Technology Committee. I will invite him to share his thoughts on both documents with the chair, Sir John Bell. He may like to know that the group had its inaugural meeting on 25 May.

The noble Lord, Lord Taverne, asked about the funding of the group and I think that the noble Lord, Lord Warner, expressed a few fears on that front. I agree that we need to ensure that the group is properly supported. That is why we provided this support through the Department of Health, which I trust will continue.

As the noble Lord, Lord Patel, and many other noble Lords pointed out, we are already seeing some important developments in relation to patients with diseases such as cancer and diabetes. Scientists are finding new genetic mutations that can help to define alternative treatments. We can identify patients who respond better or who suffer more severe side effects from a particular drug, helping to ensure that it is appropriately prescribed. The development of these stratified medicines has the potential to improve patient outcomes without increasing the cost to the NHS.

In laboratories, the new DNA sequencing machines have increased capacity so that a single laboratory can sequence more data in one day than was achieved during the entire human genome project. Utilising this capacity effectively across all branches of medicine will save the NHS millions. We are linking DNA sequencing with advanced IT to diagnose children born with severe congenital problems and to help guide their treatment and care. All these achievements are opening up a new world of healthcare that can be tailored more effectively and efficiently towards individual patients.

The Government are determined to develop a patient-led NHS that delivers better health outcomes. It is clear that genetics and genomics have an important role to play in achieving this aim. However, before moving forward, we must ensure that we are getting the most from the investment already made. Services should be commissioned by those best placed to make the decisions-doctors in consultation with patients who are free to make confident choices about their own healthcare, and better manage it as well. To make that happen we need a commissioning system that is consistent and provides appropriate services to NHS patients and their families. The UK genetic testing network is already working with specialised commissioners to determine how these services can be improved.

While we need to ensure that the NHS benefits from advances in genomic medicine we must also make sure that existing services are fit for purpose and are accessible. As the report rightly pointed out, ensuring that NHS staff have the necessary skills to use genetic testing effectively is a vital component of providing better services. We want to see that addressed as soon as possible so that the roughly 400 types of genetic tests already available are better used by NHS staff. That is why we support the work of the GMC's Tomorrow's Doctorsprogramme, which sets out the

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requirements for the knowledge, skill and behaviours that undergraduate medical students should learn. It includes a requirement on medical schools to cover genetics in their curricula and provides flexibility on how best to cover its application and its place in diagnosis.

Reducing the budget deficit is the main priority of the Government but even if that were not the case the public still have the right to expect NHS services to be provided in the most cost-effective way possible. We have a duty to identify any practice that is not providing value for money and to take action to remedy the situation. That is why the Department of Health is pushing ahead with the recommendations of the Carter review on modernising pathology services, as mentioned by the noble Lord, Lord Warner. They deliver the highest volume of genetic testing services by far. This will see the services rationalised and reconfigured to increase the quality, productivity, efficiency and effectiveness of pathology services. I say to the noble Lord, Lord Warner, that the size and importance of these services mean that we have a duty to ensure that they are as effective and efficient as possible. The Carter review estimated that the reconfiguration of services could improve quality and realise £250 million to £500 million efficiency savings annually. It is our challenge to realise that potential.

The public have a right to hold us accountable for the way in which we invest in the NHS and to be confident that its primary focus is to improve outcomes. The Government will ensure that these principles are applied across all genetics testing services available to the NHS. The noble Lord, Lord Patel, spoke about clinical trials. Currently, the Department of Health, the MHRA and the MRC are considering what the obstacles are to the initiation and conduct of clinical trials in the UK and how these might be addressed. The MHRA is also working with European colleagues to identify any issues at a European level. The Government consult all interested parties when considering changes to legislation.

The noble Lord also raised the issue of inconsistencies in access to the provision of genetic services. Clearly articulated commissioning competences will ensure that commissioners can incorporate new scientific developments into their commissioning decisions and deal with unacceptable variations in access to care and treatment. As the noble Lord, Lord Kakkar, rightly pointed out, one of the keys to this is education. That function is currently provided by the National Genetics Education and Development Centre based at Birmingham Women's NHS Foundation Trust. We have agreed a work programme for 2010-11 with the trust. It is agreed to target key professional groups for the programme. Future provision will be further considered through the work of the strategy group and in consultation with the trust and the centre.

The National Genetics Education and Development Centre has already made good progress in raising the need for genetics to be part of the curricular and CIPD programmes across the medical professions, but we recognise that this conversation must be had with the royal colleges and the GMC, which are best placed to advise on curricular content for the professions that they represent.



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My noble friend Lord Selborne, whose speech on bioinformatics I listened to with close attention, asked a number of questions. It is still very unclear what type of bioinformatics will be needed for genetic testing, and what their true role will be in supporting genetic services. Work is already under way at Manchester National Genetics Reference Laboratory, and the NHS chair on pharmacogenetics based at the University of Liverpool is carrying out further research into how this new technology can best be utilised.


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