Select Committee on Science and Technology Minutes of Evidence


Examination of Witnesses (Questions 31 - 38)

TUESDAY 7 DECEMBER 1999

JOHN DENHAM MP, YVETTE COOPER MP, LORD SAINSBURY OF TURVILLE AND DR PAT TROOP

Lord Soulsby of Swaffham Prior

  31. The witnesses will be aware that George Poste, who until recently was at SmithKline Beecham, has provided us with a very upbeat assessment of the potential for an NHS-wide genetic database. He sees the National Health Service as a robust repository of the important genetic information about health and disease in the country and the regional problems and so on—quite unlike any other country in the world. In contrast to the marked upbeat assessment that Poste does in this document, the Department memorandum is more or less agnostic about it. Do the Government see the significant potential benefit weighed against the obvious and undoubted practical problems of getting this? The way forward, we would believe, is to take up Poste's suggested assessment and use this essential information to the benefit of the national health in its broadest sense?
  (Lord Sainsbury of Turville) Perhaps I can deal with this question and can I also welcome this opportunity to talk to the Committee about this? I think it might be helpful at the beginning of this to put George Poste's proposal in the context of what is already happening in this field and the Government's action that it is already taking. As I am sure you know, the Government have already invested a significant amount of money in genetics. In the comprehensive spending review, the Medical Research Council and the Biotechnology and Biological Research Council both received increased allocations for biomolecular and biomedical research into the human genome. This included £12 million to the MRC to develop a database of genetic and clinical information designed to look at the interaction between genetic and environmental factors in disease. It is very important to make the point that participation in this database will be entirely voluntary. The MRC is also working closely with the researchers to identify what needs to be included in this database and it is also taking careful steps to address the social and ethical issues raised. I believe this is a first step on which we can build in the future. Currently, discussions are taking place between the MRC and other funders about establishing a major clinical and genetic database with a cohort of 500,000 individuals. Participation in this will also be, again I make the point, entirely voluntary. For that database, electronic access to national health records would be needed to assure efficient and cost-effective follow-up. Then we are considering George Poste's proposal. I do not think he is, in fact, basing his memorandum on suggesting that we immediately go to a nationwide database, although at some stage we would need to consider that after we have gained the sort of experience we are gaining on limited databases. That would raise very significantly greater issues in terms of both the ethical and the social questions. Of course, it would also raise huge cost implications. If you base it on the Iceland situation, you would be talking about huge costs. It would be a very real question as to whether the additional benefits you got from that made those costs applicable to the sorts of databases we are talking about at the moment.

Lord Rea

  32. Lord Soulsby said he thought that the Government's memorandum was perhaps agnostic on the issue. When I read it I thought it tended more towards atheism! I felt it was rather a negative view and did not give adequate space to the benefits that might possibly ensue. Do the Government consider that, if further work does show that the proposal might be worthwhile, that the various problems to do with the security of the data could be overcome? Do you think that there is a positive place for this suggestion?
  (Lord Sainsbury of Turville) As I hope I have made clear, we are taking action, which is clearly based on the assumption that there will be substantial benefits that will come from this kind of research. But, equally, the ethical and the legal issues are very real ones. At each of the stages of development that I have been talking about in the development of databases, we will need to address those issues in a process which is open public consultation, which involves giving people information and discussion of the risks and benefits, so that we do have full public involvement as we go forward. The issues do change and become much more difficult as you go towards a national database as opposed to purely voluntary ones on a limited scale.

  33. George Poste's memorandum talks a lot about the need for the data to be anonymised so that patient confidentiality is not breached. In large-scale epidemiological studies this is surely possible. It may, however, be difficult to see how you could get the information from particular patients and yet conceal their identity. Do you see ways in which this problem can be overcome?
  (Lord Sainsbury of Turville) I think at this point all one could say is that there are very substantial issues, and a whole range of problems, which would need to be sorted out. I think the biggest one is simply that it would no longer be on a voluntary basis and people have strong feelings about that. There are also all sorts of other issues about the use of information and so on, patenting on the basis of it, which would need to be considered. We will need to do that as we go forward.

Lord Soulsby of Swaffham Prior

  34. If I can come back for a moment on the issue of eventual cost? I think George Poste envisaged that the private sector would come into this in a very substantial way. Of course, the genetic database would be of tremendous importance to pharmaceutical companies in their development of new products and the rest. So where do you see the private sector cutting in on this, (or maybe it is there already, I do not know), but possibly somewhere down the road do you see a strong role for the private sector to contribute?
  (Lord Sainsbury of Turville) I think it is very important, as we develop these databases, that very clear consideration is given to the needs of the pharmaceutical industry in terms of research and developing new drugs to meet diseases. That must be a fundamental part of it. We need to take very strong account of that in designing them. I think equally it is probably extremely important that these are seen to be public databases, under public control, and there are not questions, therefore, about commercial considerations dominating what takes place. The specific question about what contribution is made financially is one we still have to tackle, but certainly it is important that their views are taken account of, as to what information would be useful for drug use.

Lord Haskel

  35. Just a very simple practical point, do you think that the information technology is actually going to be in place to carry out George Poste's suggestion?
  (Lord Sainsbury of Turville) I think that is probably one for Yvette Cooper to talk about from the National Health Service perspective. I do not think, at this stage, this is an issue. Clearly, in terms of the wider world and what is happening on information systems, it would be important in what is designed, that if it was potentially wanted then it could be done, even though at this stage we do not have any plans for it. So, as always with information systems, it is important that they are designed with flexibility for the future, even if at this point there are no specific ideas about what that would be.
  (Ms Cooper) Just to add to that, the NHS Information Technology Strategy is involved in introducing electronic health records between now and 2005. As we develop that technology and computerise whole swathes of the NHS, this has to be with future developments in mind: to make sure that we are not closing off any potential future developments in technology, should they become beneficial in the future, with the design of the technology we adopt today. As far as possible, that forward looking approach is taken into account. It is worth saying that the kind of proposal from George Poste of SmithKline Beecham, of an NHS-wide database, is hugely ambitious in terms of the technology; in terms of linking hospitals, Gps, and that kind of follow through. In addition to the ethical and legal considerations that would all need to be satisfied, there is the further question about how much additional benefits it would create on top of the kind of sample approach that MRC is exploring, at the moment, which obviously has the benefits of being a voluntary programme as well. So obviously there are resource implications and technical feasibility questions, none of which are in any way likely to be resolved in the near future.

Lord Methuen

  36. I think most of the points have been answered but I see the present IT systems in the National Health Service as being essentially a series of islands in terms of the Gps and the hospitals. Obviously you need to take this much more forward with far greater integrated systems. Do you think your present strategy will limit that?
  (Ms Cooper) I will make a broad point and Pat Troop will want to add something to that. Obviously the aim is not to constrain future developments. The aim is to have systems which will allow future developments to take place, (whatever we may decide they may be in the future)—to have a system which allows us to take advantage of future developments. Obviously, with the way that technology moves and the pace of change, you can never guarantee that you will be able to do something with your technology in ten years' time that you were able to foresee today as the right thing to do.
  (Dr Troop) The programme is first to ensure that hospital records are wholly computerised, and general practitioner records are computerised, but it is also to develop the links between them so that they will not have islands. Therefore, during the course of the next six years, there should be the links between the Gps and the hospitals to get the laboratory tests: for example, out-patients' appointments, waiting lists, and so on. That is part of the programme over the next six years, so that we will not have the situation you described.

Baroness Platt of Writtle

  37. In our report on resistance to antibiotics[5] we were struck by the incompatibility of different IT systems within the National Health Service. All right, I am glad to hear that there is a programme until 2005, but are you ensuring that, in that period, people will not be putting in incompatible systems? It seemed to us that it was very urgent that they should be compatible and able to communicate through the IT system with the various islands you are talking about.

  (Mr Denham) That is my area. Yes, the answer is that we are determined to make sure that the systems are compatible. The requirements of the system have been clearly set out in a number of documents over the last couple of years. Each part of the health service has to have local implementation strategy, setting out the period of years up to 2005, the strategy to be achieved in that local area. There are some key projects nationally, ensuring that Gps are linked into the NHS net, through which we can be sure we either have the same or entirely compatible systems in place. So we do recognise the need to avoid the mistakes of the 1980s, where particularly systems were built like a series of chimneys which could then not talk to each other, even within the same area from one part of the health service to another.

Lord Jenkin of Roding

  38. When the Select Committee went to SmithKline Beecham in Harlow earlier this year, I found myself hugely excited by George Poste's proposal, when he spelt out how increasingly treatments—and, particularly, more complex drug treatments—have different effects on different people with different genetic make-ups. This is a science which is comparatively young but the potentiality of targeting treatments to people who have particular genetic make-ups in their persons seems to me to be enormously important and have huge potential in it for saving money and for increasing human health and happiness. I just wonder whether, as I said at the time, this is an appropriate subject for a select committee inquiry? There was a sense around the table that it might be. Having heard Ministers and your 2005 timescale, and what Lord Sainsbury said about the nature of the work, accepting all the difficulties of confidentiality and patient consent and so on, would a study over the next 12 months be premature? Should we wait or is this something that you feel that, with the considerable expertise that sits round this table, this might help the Government forward?
  (Lord Sainsbury of Turville) May I say, first of all, I do not think there is any question that we do not share that vision. What the sequencing of the human genome will lead to, above all else, is a radical change in medicine. This will mean that, to a much greater extent, treatment is targeted at individuals to take account of their genetic make-up. That is going to be a major change. As you said, in terms of human happiness and welfare, this will be a very significant and important change. It is also clear that this work needs to be underpinned by the kind of databases that we are talking about. I do not think, in that sense, that we differ at all from George Poste's view of this. The question is, what is the extent of those databases, which really gives you the benefits without going into astronomical costs? Clearly, to have a nation-wide genetic database, the costs of that are huge. The question is, how do you get that information in the most effective way, taking account of all these ethical and social considerations, without overwhelming costs? That is the issue, not the issue about the obvious benefits which will come from this. I think that this is a subject where a lot of thinking is taking place at the moment. I know that the Foresight Programme, one of which is looking at health care, will be focusing on this very particular issue. So I would like to comment that this is the right moment but certainly the widest public discussion of this would be helpful.
  (Mr Denham) If I could add a point briefly to Lord Jenkin, which is simply to say that, whilst we have been discussing this morning a particular proposal for a database, of course the National Health Service is moving ahead in the areas of genetic testing in the system; regional specialised commissioning groups, which are responsible for ensuring that we have the right concentration of new specialist services in the National Health Service. Their priorities for the coming year will be ensuring the appropriate provision of specialist genetic testing in those areas where it is already directly applicable to medical science at the moment. There are issues to be dealt with in the future but this is also happening in very important areas in the health service already.

  Lord Jenkin of Roding: But, as Lord Sainsbury recognised, in the area of what Poste calls "population genetics"—this is what we are talking about in this one—this takes us outside the obviously important things which Mr Denham has been speaking about.


5   Resistance to antibiotics and other antimicrobial agents, 7th Report 1997-98, HL Paper 81. Back

 
previous page contents next page

House of Lords home page Parliament home page House of Commons home page search page enquiries

© Parliamentary copyright 2000