Public Bodies Bill [HL]

Lord Winston Excerpts

Wednesday 9th March 2011 Lords Chamber

[Lord Mackay of Clashfern]

My Lords, I declare an interest as an honorary fellow of the Royal College of Obstetricians and Gynaecologists and as the person who had the privilege of introducing to this House the Bill that ultimately became the Act which has been referred to more than once. As a parent of such a body, it would be strange if I wanted to see it dissolved altogether. On the other hand, a parent who is interested in his child is glad to see him or her develop and possibly make unions with others who seem to be suitable for them. I had the honour of serving on the Joint Committee looking at the recent Bill in this area under the distinguished chairmanship of the noble Lord, Lord Willis of Knaresborough. I strongly supported the decision taken by that committee to recommend against the proposed union between the Human Fertilisation and Embryology Authority and the Human Tissue Authority. I think I am right in saying that the noble Lord, Lord Willis, may have done a slight injustice to the noble Lord, Lord Warner, because I think the noble Lord, Lord Warner, said that he had recommended against it to the Minister. I do not know whether the Minister accepted it immediately, but eventually it was accepted by the corresponding Minister.

The matters that were the subject of the Bill which I had the privilege of introducing are certainly among the most important areas of modern scientific and medical work. But science and medicine have moved on very fast and far since that Bill was introduced and the developments dealt with in the most recent Act show that. That Act moves out of pure human embryology to the transition towards hybrids and, at the extreme end, towards the animal end of embryology. It shows that science has developed in such a way that the distinct field carved out in the original Bill has been altered by progress, if you like to think of it in that way, and I hope that that is what it is. There is a great deal to be said for the view that modern scientific and medical research is very difficult to split up. The embryo is important, but there are other important aspects of that research. I can therefore see a very strong argument for having a research body which has overall responsibility in this area.

There are of course other functions in HFEA which are important, particularly the control of IVF. When the body was originally set up, the practice of IVF was exceptional and a complete novelty, but a lot of water has gone under the bridge since then and it has become much more of a standard clinical procedure. It is true that developments have taken place there, but they have taken place also in other branches of medicine. It is not only embryology or IVF that have moved forward; fortunately, a great number of developments have taken place in the practice and application of medicine and surgery. It strikes me as extremely logical to have a body that would have overall responsibility for that.

If that be right, there is a good deal to be said for the view that the time has come to review the position in regard to the two health bodies that we are discussing and see whether a more integrated approach to research on the one hand and clinical practice on the other could be furthered by having bodies responsible for the whole of the first and the whole of the second. I agree that a good deal of detail needs to be filled in, but I remind myself that we are not deciding today whether this should happen. We are talking about a power for a Minister to decide what to do in the light of the further consultation provided for in the amendments moved by the Government since the Bill has been in Committee. It is a valuable opportunity for these matters to be considered. I can understand a lot of what has been said on the other side of this argument, but I should like to see retained in the Bill the power to deal with these issues in a way that reflects the developments that have taken place in the research and practice of medicine since the original Act came into force.

[Lord Winston]

My Lords, my noble friend Lord Warner has declared support for the Minister sitting on the Front Bench; I suspect that I might in the next few minutes give him even greater support.

We have to understand that research in these areas has now gone way beyond embryology. There was a time when people were very concerned about the status of the embryo, when embryo research was relatively novel. I should like to correct a remark made by the noble Lord, Lord Walton, who very kindly referred to work on pre-implantation diagnosis. That work produced pregnancies before the establishment of the Human Fertilisation and Embryology Authority, and people like me were greatly exercised to establish regulation. In spite of what has been said in this Chamber, we were very much in favour of regulation. Since there was no government regulation, we started a voluntary licensing authority which became a model in time—obviously, a very imperfect model—for the body set up under the splendid Bill introduced by the noble and learned Lord, Lord Mackay of Clashfern.

Stem cell biology covers every aspect of human disease, from cancer to brain research, from human consciousness to the replacement of organs and transplantation, and a whole range of other areas. It is really—forgive the pun—inconceivable that this could be dealt with by the Human Fertilisation and Embryology Authority properly under its present form or any future form. I would argue that with the advent of epigenetics, the recognition that now the environment in which cells are placed in culture and elsewhere is such a universal issue in medicine there has to be a much more global look at this kind of research. I feel that there is a strong case for suggesting that we have to accept that research ethics are universal and that they tend to have the same sorts of problems, whether it is patient consent, the end or beginning of life, or a whole range of other issues. In fact, the end and beginning of life have some very similar moral issues which need to be debated by ethics committees. The noble and learned Lord was right to point out that trying to look at these issues in a new form would be absolutely apposite. I for one am certainly not in favour of a free-for-all. I am not quite certain who in the medical profession is. I do not think that that is true.

The regulation of clinical treatment has been in many examples woefully inadequate. The noble and learned Baroness, Lady Butler-Sloss, pointed out that while she was sitting on the Bench she had the most terrible case of a woman who had the wrong embryo transferred. That was done, of course, under the auspices of the Human Fertilisation and Embryology Authority. No regulatory authority, no matter how perfect or how good, can regulate against every human error. We should have a set of principles in laboratories which keep those mistakes to a minimum, and the regulation of medical practice must also enforce that.

I do not think that there is any evidence from what has happened that the HFEA has done a particularly good job or a particularly bad job. In some areas it has not been very powerful. For example, many things are forbidden under regulation in this country. Patients actively seek fertility tourism in other countries where they can get, for example, donor eggs and perhaps come back pregnant. Very often clinics in this country, although it may be against regulations, refer these patients outside. Of course the HFEA, not unreasonably, is powerless to deal with that sort of problem.

It is also true that the fees charged to patients are often extremely exploitative. I have no doubt that we will come back to this when we come to the pending health Bill, because this is a much bigger issue in terms of how we finance the health service. At the moment, IVF, whether it is done in the private sector or in my view in the National Health Service, is charged on the basis not of what it costs but rather of what the market will bear. That is a very big issue which we will need to discuss, because I suspect that that may apply to a lot of medical practice. It is an issue to which I am sure this House will want to return. Costing the procedure is very important.

Someone mentioned follow-up: one sad thing about the opportunity in 1990 was that we did not—even though we had records of IVF pregnancies, and IVF successes and failures—make any attempt to follow up babies after this procedure for the long term. There have been many reasons why that was difficult, such as data protection. But this lost opportunity means that some of the procedures often in routine use may have unforeseen consequences in children when they are adults. We now know from David Barker’s work, for example, that babies who are born underweight and premature are much more likely at the age of 50 or 60, as the Minister knows, to suffer from heart disease, stroke, hypertension and possibly osteoporosis as well as diabetes and one or two other diseases as well. Of course, we may see more diseases which are likely to be epigenetic due to those early influences.

I have to say that, although it is claimed that the HFEA gives out information to patients, six years after I retired from clinical practice running a very large IVF service, I am bombarded daily with e-mails—I have had several today—from patients who want information about IVF and do not feel that they are getting the information they should from the statutory authority. That remains a problem.

The clinical regulation of non-evidence-based practices has been poor. For example, there is no evidence that the preimplantation and genetic screening of embryos designed “to improve pregnancy rate” works. Yet several clinics charge large fees for doing this under regulation even though there is not a base for justifying its use. That also applies to costly immune therapy, which is highly controversial. Again, this is used in women who sometimes fail to get pregnant, under licence from the HFEA. This is an example of how in fact regulation is really quite limited in clinical practice.

--- Later in debate ---

[Baroness Deech]

My Lords, on a factual point, may I correct the impression—it may have been a mistake— that the previous speakers have given that any number of embryos can be implanted in a patient? The HFEA brought down the number of embryos from three to two and is working towards one. That was in the face of relentless resistance from patients, who wanted the best chance of becoming pregnant, and indeed many—but not all—of the clinicians and embryologists, who said, “We know what’s best for our patients”. The impression should not be given that an unlimited number of embryos are implanted. The number is two and they are working towards one.

[Lord Winston]

Forgive me for correcting that impression. Many units limited the number of embryos well before the HFEA did. At Hammersmith Hospital, we limited the number of embryos two years before the HFEA did. We were not alone; a number of units did that because we were very concerned. The idea that medical practitioners do not feel responsible for the pregnancy that is induced is, I think, a dangerous precedent. It is just not true. Of course there is a problem when patients put you under pressure, and it is a very difficult ethical issue that needs to be resolved.

[Lord Patel]

My Lords, I think I have lost my thread, but I have said what I wanted to say.

Health: Multiple Sclerosis

Lord Winston Excerpts

Wednesday 2nd February 2011 Lords Chamber

[Earl Howe]

My Lords, I have extensive briefing on some upcoming and promising treatments that may or may not emerge in the National Health Service, but I have to say that that is not one of them. I shall go away and ask the department to inform me.

[Lord Winston]

My Lords, in addition to the important point made by the noble Lord, Lord Walton, about drugs that should be available under the National Health Service, is the Minister aware that some years ago a Select Committee for Science and Technology inquiry gave clear evidence that, in small doses, cannabis is of great benefit to some patients who have spasms and other problems with multiple sclerosis? Do the Government have any plans to allow the use of that drug in those circumstances?

[Earl Howe]

My Lords, the noble Lord will know that a drug called Sativex was recently licensed, which is derived from an extract of cannabis, as he will be aware. Having said that, I believe that NICE has issued no guidance to the NHS on the use of Sativex, so it is for local primary care trusts to make funding decisions based on an assessment of the available evidence and on the basis of the patient’s individual circumstances. As the noble Lord rightly said, Sativex treats the symptoms of severe spasticity caused by MS and is not a disease-modifying drug as such.

Human Fertilisation and Embryology Authority/Human Tissue Authority

Lord Winston Excerpts

Tuesday 1st February 2011 Grand Committee

[Lord Winston]

My Lords, I most grateful to my noble friend Lady Thornton for introducing this debate. It is rather delightful for me to be able, on this rare occasion, to support the Government’s position and to support the Minister—at least, I suspect that I will be supporting him. It is a particular delight to see the noble Lord, Lord Wigley, attending this debate; it was he who, in 1985, broke the Speaker’s Chair in the debate when the Private Member’s Bill came in as part of Enoch Powell’s attempt at legislation. I, of course, can declare an interest as an ex-poacher in this area—I no longer run an IVF unit—and I note that I am followed by a noble Baroness who was a gamekeeper.

I must say that I was open-mouthed at the quality and the succinctness of the speech of the noble and learned Lord, Lord Mackay of Clashfern, when he introduced the HFE Act. It seemed like a model of what should happen. It is fair to say that at the time it was an essential piece of legislation, which has now passed its day. It is no longer necessary; the research that it regulates is not really suitable for regulation by the HFEA. I believe that other areas of medical research, such as paediatrics, obstetrics, geriatrics and assisted dying, in many ways raise much more important ethical issues on a day-to-day basis. With stem cell research, the HFEA is inadequate for the purpose. A completely different body is needed, since stem cell research is ubiquitous and affects every tissue in the body, including the brain and the liver, and will clearly be an important replacement therapy in future. If it is to be regulated, it needs a different kind of touch.

As for clinical regulation, frankly the HFEA cannot prevent accidents or errors. It has not done that and it cannot do that; no regulatory authority can do that completely, any more than any other way of inspecting laboratories can. It does not prevent exploitation of women, who pay massive fees—in my view unreasonably—and has not helped in the costing of IVF treatment. It is unable to prevent fertility tourism, which goes around British legislation on a regular basis, and has not prevented clinics from collaborating with overseas units in allowing their patients to go to places such as Spain and Russia to seek treatment that they cannot offer themselves—with what kind of relationship, I am not sure.

There is a repeated assertion that the HFEA has always assuaged public concerns about IVF. I think that that was true 20 years ago but it is not true any longer. The public are pretty mature about this area, as was shown clearly by the hybrid embryo Bill. Things have moved on and the public are rather more sophisticated.

Lastly, one of my concerns about the HFEA is that it is extremely costly for men and women who are already paying for these services. I have just checked on the cost at Hammersmith Hospital, a clinic that I used to direct. Effectively, the HFEA requires two extra salaries to be paid and individual patients will pay on average around £300 for the use of IVF licences for their treatment. That seems an unfair burden in an area of medicine that is already extremely burdensome for the patients.

NHS: Front-line and Specialised Services

Lord Winston Excerpts

Thursday 13th January 2011 Lords Chamber

[Lord Winston]

My Lords, back in November, when I had just come back from cycling around Beijing and seeing at first hand the health service in China, I spoke later that day in a similar debate when the noble Earl, Lord Howe, admonished me for being somewhat acerbic in my comments about the health service. I hope that he has forgiven me, because I think a combination of my jet lag, my passion for the health service—like his passion for the health service, which I greatly respect—and the anxiety that one sometimes feels when speaking from these Benches, and for me the unusual taste of being very briefly on the Front Bench, resulted in my being rather stronger in my remarks than perhaps I should have been. I would, however, like to ask him some questions about the third issue that the noble Lord, Lord Turnberg, has produced in his debate, and I congratulate him on introducing it. May I also say what a pleasure it is to see that the noble Baroness, Lady Jolly, has put her name down to make her maiden speech in this debate? We look forward to hearing her in just a moment.

Noble Lords must forgive me if I concentrate on hospital medicine, but that is the area I know best. I remember many years ago, from my experience in the United States—when I was a visiting professor in Baltimore and Boston, and later in Texas—that the Americans were very surprised at the massive surgical experience that we could gain in the health service in this country because of the way in which the service was run. We could centralise many specialised services and do very advanced work that was both innovative and useful for research. One issue is that, while this has been more difficult since the introduction of the internal market, there have been at least some attempts to get back to doing exactly that.

Many aspects are really important for centralisation. First of all, that kind of centralisation is best for some patients with particular needs if they can travel to a service. That often means that they are going to get the best medicine. It is a question not of patient choice but of making sure that they get the best treatment from the most qualified people. Secondly, that kind of centralisation is ideal as a pull for teaching. It is also excellent—indeed, some people would say essential—for training people to make sure that we get the best surgeons. It is a problem that the noble Earl, Lord Howe, is very conscious of, given the changes that have happened as a result not of the NHS but of European pressures, which have made things more difficult.

Centralisation is also important for innovation. The key issue is how these expected changes in the health service will affect our excellence in research. What I really want is reassurance from the noble Earl that the sorts of things that were developed in the health service hitherto will not be difficult to achieve under the current proposals in the White Paper. For example, it seems impossible to imagine that in vitro fertilisation could develop as a research procedure in the structure as proposed. Certainly, during my time at Hammersmith, I saw by-pass surgery, transplant surgery and the cancer smear test being developed, and many other examples of innovative surgery and medicine. Many of the great institutions, such as Great Ormond Street, Hammersmith, and some in Liverpool, Manchester and elsewhere have been made great and international because they have been able to function in a way that it is difficult to see will continue under the structure in this White Paper. I want to make certain that the Minister agrees—I know he does—that the jewel in our crown is the National Health Service. A very special aspect of that, which is internationally recognised, is the unique nature of academic medicine in this country. I would like him to tell us how academic medicine will be protected and will flourish in the structure of the White Paper.

Health: Influenza

Lord Winston Excerpts

Tuesday 11th January 2011 Lords Chamber

[Earl Howe]

That is precisely why we have an independent Joint Committee on Vaccination and Immunisation: to advise Ministers on these matters. Ministers are bound to take that advice. Indeed, the previous Government determined that they were legally obliged to take the committee’s advice, which is what we have done.

[Lord Winston]

My Lords, is the Minister aware that many pregnant women are particularly nervous about all kinds of vaccination during pregnancy, including the flu vaccination? I know that from first-hand experience. Does he feel that the Government are doing enough to inform pregnant women about the risks or otherwise in that instance? Could more be done?

[Earl Howe]

I am sure, as I have just said, that lessons can always be learnt about what more can be done. As I mentioned, we saw a lower than desirable uptake of the vaccine in the early weeks among pregnant women. I am happy to say that that has now been rectified and a lot more pregnant women are coming forward. However, it emphasises the noble Lord’s central point that perhaps GPs have a special duty at the moment to encourage pregnant women and to reassure them that the vaccine is absolutely safe.

Healthcare

Lord Winston Excerpts

Thursday 28th October 2010 Lords Chamber

[Lord Winston]

My Lords, I congratulate the Government on a wonderful, beautifully written document—the White Paper, Liberating the NHS. Finally, the NHS is to be freed. The document’s honeyed tones and warm aspirations are sweetness and light. Its expressions of good intentions will easily deceive less well informed readers. However, to leave aside the aspirations, to which I shall return, the one thing that the NHS does not need is another reform. That is why in opposition Mr Cameron promised to halt the merry-go-round of organisational change with which the NHS had been previously inflicted. This promise was countersigned by a pledge by Mr Clegg, the Deputy Prime Minister.

I have absolutely no desire to embarrass the noble Earl, Lord Howe, for whom I, like so many of us, have genuinely a huge regard, but we have already learnt how trustworthy this Government as a whole are. So this merely minor change—no merry-go-round—means a reorganisation in which all primary care trusts are to be liquidated, all hospitals will become foundation hospitals, strategic healthcare authorities are to be abolished and the responsibility for public health will become part of the remit of local authorities. This does not seem to be so minor after all—more of an amazing big dipper. In this battle for the NHS, more than three-quarters of the £100 billion NHS budget will be devolved to general practitioners for administration.

Over the past few months, we have heard a great deal about the legacy left by the previous Government. Forgive me if I feel angry at this; it is not often that I do and seldom have I felt as angry. The negative tones have been the cornerstone of an excuse for the severest cuts in public spending in living memory. This Government’s pronouncements, on the whole, are not to be trusted. If their pledges on the NHS reforms are void, so are their promises on the ring-fencing of NHS funding. If we want to consider a legacy, perhaps we might recognise that the Labour Government left the NHS in its healthiest state for decades—a position that this Administration have inherited.

In spite of the Government’s assurances, the NHS is already being cut. Managers have been told to find £20 billion in efficiency savings if widespread closures are to be avoided. To give just one other example, in London the deaneries are threatened. Perhaps the Minister can confirm that, where so much healthcare is needed and where the cream of our young professionals is trained, junior hospital posts are facing a cut of 14 per cent next year. As I understand it, 70 key training posts in general medicine out of a total of 300 are to go—perhaps the Minister can confirm this—and another 70 posts from the other specialities are to be cut by 2014.

If the King’s Fund has calculated correctly, the reorganisation will cost the NHS between £2 billion and £3 billion, which will be taken from patient services. Consider this for a moment: the pressure of population change, the incidence of chronic illness, the rising age of our population, inflation and the rising expectations of patients mean a real cut in resources. The biggest problem will almost certainly be in chronic care. The massive cuts proposed in social care and welfare services will inevitably result in increased pressure on what we can now see is becoming an already underfunded NHS.

What about research? Here is another unbelievable sleight of hand by the Government. Some of the so-called ring-fenced NHS research budget will almost certainly come from the other research councils. I declare an interest as a member of the Engineering and Physical Sciences Research Council. We already fund a huge amount of healthcare research, as does the BBSRC. We will be asked increasingly to contribute substantially, at the risk of other research. We will be heavily pressured on our own so-called ring-fenced budgets. Meanwhile, regarding NHS R&D carried out by the NIHR, if we are talking about assessing outcomes, how is its performance to be evaluated? That will certainly not, it appears, be anything like as rigorous as the superb work of international quality, funded by the research councils, in our top research universities. Here, surely, is a case for government scrutiny.

Front-line care is already threatened. The dulcet tones of the White Paper with its emphasis on patient choice and outcomes are a smokescreen. Of course patients would like choice, whatever that means, but what they really want is competent, efficient medical care. I recently went to a maternity ward in one of the most famous maternity hospitals in the country to visit a relative of mine in her 20s, an NHS patient, who had recently given birth to a premature baby at 35 weeks. Her GP had given her the choice of three different hospitals and she had chosen this hospital. She was four days post-delivery and she had not seen a doctor. Her blood pressure had been 200 millimetres of mercury—a situation in which she might even have had a stroke or a seizure—but she said that she had not been seen by a doctor. She was sitting there trembling with worry. She was scared stiff. What she wanted was a doctor to listen to her and to talk to. Even though it is some time since I left the health service or have done any medical practice, I felt obliged to examine her. I went to see the nursing staff and asked whether I could speak to the house surgeons. None was available, so I asked to speak to the registrar. They did not know the name of the registrar. I had to phone the central switchboard to find out who the on-call registrar for obstetrics and gynaecology was. It was only when I left the hospital that there was suddenly an outpouring of care and three doctors visited my relative in about five minutes.

What about outcomes? Outcomes depend so much on social circumstances. Equity and Excellence: Liberating the NHS mentions cancer, stroke, asthma and so on, but the outcomes of treatment depend on the circumstances of the patient. What we learn more and more, certainly with epigenetics, is that what happens to us in early age also plays a part. What happens in a child aged two or three can have far-reaching effects on whether that child is more prone to diseases such as stroke in 60 years’ time. How do you measure those kinds of outcomes with the possibility that this White Paper offers?

Finally, to leave the—

[Baroness Northover]

My Lords, I think that I need to remind noble Lords, as the noble Baroness, Lady Farrington, would always remind us, that this is a time-limited debate. When the clock reaches four, noble Lords’ time is finished.

[Lord Winston]

My noble friend Lady Thornton and I have agreed to split our time, which is why I went on for the extra time. I shall finish with one sentence. If we really want to improve the health service, we should make certain that doctors have enough time to listen to patients and that nurses are not involved with so much paperwork that they cannot speak to patients, we need to improve training by better investment, we need to renegotiate the EU working time directive and we need to make certain that hospital doctors work in teams so that there is proper continuity of patient care.

Health: Prostate Cancer

Lord Winston Excerpts

Monday 19th July 2010 Lords Chamber

[Earl Howe]

My Lords, my noble friend raises an extremely important point. He may like to know that last year the department wrote to primary care trusts to remind them that any man without symptoms of prostate cancer who wishes to have a PSA test is entitled to have one. However, it is important that anyone availing themselves of the test does so on a fully informed basis, because, as I said, it is unreliable and can lead to unpleasant side effects.

[Lord Winston]

My Lords, is not one of the problems with the PSA test the fact that it produces a vast number of false positives, meaning that a number of people could be at risk of mutilating treatment? Will the Minister give an answer to the question about advances in genomics, which might help in the long term with regard to prostate cancer?

[Earl Howe]

My Lords, the noble Lord, Lord Winston, is probably in a better position to advise the House on advances in that area of research. I can tell the House that the National Cancer Research Network, set up by the Department of Health in 2001, has brought about a tripling of the number of cancer patients entered into clinical trials. About 12 per cent of cancer patients in England enter NCRN trials, which is the highest per capita rate of cancer-trial participation in the world. The network currently supports about 51 prostate cancer studies, so there is no shortage of research going on.

Genomic Medicine: S&T Committee Report

Lord Winston Excerpts

Wednesday 9th June 2010 Lords Chamber

[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 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,

“we need somewhere in the UK which has a clear mandate to handle the biomedical records with that as their first priority”.

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. 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 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 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.