Select Committee on Science and Technology Minutes of Evidence

Examination of Witnesses (Questions 13 - 30)



Lord Soulsby of Swaffham Prior

  13. The whole area of genetic aspects of medicine is moving at a very rapid pace and with it a deeper understanding of health and disease. Do the Government share the enormous excitement of experts in this field about the potential benefits of therapeutic cloning and allied procedures, and if so, and I hope so, how do they intend to progress it?
  (Ms Cooper) Chairman, if I may, I would like to make a few opening remarks in response to that question. First of all, Lord Sainsbury and I will both be answering questions on these issues and I would also like to invite Dr Pat Troop, who is the Deputy Chief Medical Officer, to join in particularly on perhaps some of the medical questions if people want to pursue those further. It is a pleasure to be here in front of the House of Lords Committee on this issue, which I think is extremely important. Out of courtesy to the Committee and to both Houses, I would also like to put on record that I have an uncle living in the States who works in this field. I have raised this with the Permanent Secretary and with others and I am advised by them that there is no conflict of interest, but out of courtesy to the Committee I wanted to let the Committee know that. On behalf of the Department of Health and the Office of Science and Technology, I should like to welcome the opportunity you have given us to contribute on this. Clearly on this issue of research for therapeutic purposes involving the use of cell nuclear replacement or cloning techniques, we have considered the recommendation of the Joint Report of the Human Fertilisation and Embryology Authority and the Human Genetics Advisory Commission. Their recommendation was that consideration should be given to specifying in regulations under the 1990 Act two further purposes for which the use of human embryos in research could be supported. This was, firstly, on mitochondrial disorders and secondly, on diseased and damaged tissues or organs. The Government recognised these recommendations should be considered and certainly the report by these advisory bodies outlines considerable potential benefits from this kind of research. In order to do this and to consider these recommendations, we have asked the Chief Medical Officer to set up an advisory group to look further into the anticipated benefits for human health of such research, also into the potential risks and also into alternative approaches that might be pursued to the same end. The advisory committee's report served to inform public understanding and to gauge public opinion on those issues raised in the consultation document and it has provided a sound basis for further development. The expert group is building on this work, and in particular will address new issues arising as a result of new research and new breakthroughs in embryonic stem cell research which were announced just as the HFEA/HGAC were completing their report. The expert group will be considering the extent of interest in this country in pursuing those areas of research and also the likely timescales for pursuing the research. Once they have assessed those possible benefits, risks and alternatives, the group has also been asked to consider whether they raise any further ethical or social implications beyond those addressed in the HFEA/HGAC report. Finally, if the group decides to recommend a change in the legislation, they will wish to ensure that any changes that they propose are up-to-date with reasonably foreseeable developments in technology. You will be aware, of course, that any proposals to make regulations under the 1990 Act to extend the purposes for which research licences may be issued would need to be laid in draft before Parliament and be approved by resolution of each House before coming into force. So, in deciding whether or not these proposals are acceptable or appropriate in an area that is likely to generate significant controversy, we feel that full evaluation of all the available scientific evidence and also consideration of the ethical issues and public opinion and the options for regulation are fundamental to the debate. Finally, I would also like to reiterate the Government's position on reproductive cloning, which is that it is ethically unacceptable and cannot take place in this country. That was reinforced by the HFEA/HGAC report. I realise it is not the subject of today's questions but I felt it was important to put that on the record again.

  14. Thank you very much. I think we are grateful for all the descriptions of the various committees and reports that either have been produced or are in the process of being produced, but it does not come through to me, with due respect, that there is enormous excitement, as my question posed, about the great potential for human health and other health elsewhere too on the use of these technologies and the advancement of them. Obviously it is a hot potato (if one might call it that) and one does need to put in place all these considerations, but are the Government excited about the prospects that lie before us with the greater use of these technologies?
  (Ms Cooper) I think we certainly recognise the huge potential benefits that the experts have advised us could come through as a result of these sorts of developments and this kind of technology. Obviously, from the Government's point of view, we have to take that into account. We also have to examine any further risks and also any alternatives that might be the case and we do have to consider the ethical questions as well. So I think certainly we recognise the advice that we have been given from the HFEA and HGAC about the huge potential benefits, whether it means some of the questions they raise to do with growing tissue to treat degenerative diseases which could be immunologically incompatible, those sorts of things, we do take that very seriously but we do also have to take seriously further issues such as the ethical considerations as well.


  15. Minister, you have mentioned the ethical considerations repeatedly and I am sure that is absolutely right. Would you not agree that, in view of the 1990 Act already permitting research on human embryos to improve fertility treatment, to improve methods of contraception, to improve our knowledge of genetic disorders and their treatment, that it therefore falls in line for this work to be regarded as being ethical to save lives from serious injury and serious diseases such as cancer?
  (Ms Cooper) The debate on the 1990 Act is very informative because at that time the House was not able to consider a lot of these issues because the technology had not advanced sufficiently. These were issues and possibilities that the House was not aware of at that time. Obviously, of course, we have to be aware that there will be some people who opposed the 1990 Act and who oppose any further developments in these areas and have very strongly felt ethical views about that, but I think what is also important is that there are a lot of people who will support the 1990 Act but who would feel uncomfortable about any changes to the legislation or any further movement. We have to recognise those considerations as well because there is an ethical question about changing the legislation. Obviously the Houses of Parliament at the time discussed this on a free vote and they decided to place constraints on the kinds of research that could take place. They could have decided that open-ended research could take place in any field but they did decide to place those constraints on it. So I think any possible change to those constraints and to the legislation, because it will involve discussion by the Houses of Parliament—and I think that is right—does need to be very carefully considered. Some people, for example, would describe research around infertility and around congenital diseases as keeping the embryo as both the subject and the purpose of the research, and some people would say, in order to look at other areas and other forms of research, the embryo becomes the subject but not the purpose of the research. So given that people will raise those ethical questions, I think it is extremely important that the Government takes that into account.

  16. Would the Government feel that about contraception as well?
  (Ms Cooper) Obviously in any area where there are ethical questions the Government has to take all these things into consideration. That is one of the reasons that we have asked the Chief Medical Officer's Expert Advisory Group to run through these issues for us and to put them in the public domain.

Lord Haskel

  17. I would like to pursue this matter of ethical concern a little further. You may be aware there is a sub-committee of this Committee which is looking at the whole relationship between science and society and the trust that exists between science and society, and we are concerned that this is at a pretty low ebb. I wonder if you could tell us what the Government is going to do to help and educate and inform the public about these obviously ethical concerns because we think that just consulting and taking the view of expert committees is not enough. We feel that probably a lot more needs to be done and I wondered if you could tell us what you are proposing to do?
  (Ms Cooper) I think it is absolutely right that there needs to be more informed public debate on all these issues. Because of the nature of technology and because these are only now emerging fields, that debate is only just beginning. One of the terms of reference for the recently established Human Genetics Commission will be to develop and implement a strategy to involve and consult the public and other stakeholders, to encourage debate on the development and the use of human genetic technologies and to advise on ways of increasing public knowledge and understanding. So the first point to make is that we hope the Human Genetics Commission will be able to fulfil a role in terms of public education on these important issues, but obviously the process has to go wider than that. In some sense we are talking about improving the basic understanding of scientific concepts, which may involve education in schools but also adult education in the media, to improve scientific literacy generally. You raised the question of trust. We also have to ensure that the regulatory process and the decision-making in all these fields are fully transparent and accountable and people can see exactly what decisions are being taken, on the basis of what information and at what stage. I think that other organisations independent of government can also play a role in this field of promoting education. For example, the Wellcome Trust can play an important role in encouraging public debate but also patient support groups can play an important role in these areas.

Baroness Platt of Writtle

  18. Following that up, I was very interested to notice that the CMO's Group are all experts. In our nuclear waste report[4] we said it would be a long time before the public was likely to be able to accept some of these more complex and way-out, in their mind, ideas. So I wonder how you hope to get informed lay opinion which you can take into account? Obviously you would regard that as important and we would, too.

  (Ms Cooper) Yes. Obviously any consultation process needs to involve that. The CMO's Expert Group has had, I understand, about 100 responses. I am not sure about the position of those responses so I am not sure to what extent those responses to the Expert Group have involved lay people in addition to experts. Certainly that was one of the concerns for the HFEA/HGAC report as well, to take a broad range of opinion, and the Expert Advisory Group will report to ministers in February next year. I do take the point very seriously and the fact that these issues will have to be aired in Parliament if there is to be any change, so there will be a public focus on any debate and politicians, who are obviously generally lay people on these issues, will have to play a role in debating this as well. So I think that, yes, that has to be taken into consideration. We have to make sure that is part of the process as we go on.
  (Lord Sainsbury of Turville) My Lord Chairman, I think it should be made clear, of course, that the HGAC did have that very particular role in terms of consulting public opinion. It is also, of course, a wider committee, so we have already been, in a sense, through that stage and they have taken those considerations into account. What we are now talking about are quite focused technical issues that we need advice on as part of this process.

  19. I accept that, but I feel that it has not really impinged on the public mind yet. Very often, when it does impinge, then the media get hold of it and if one is not careful it is not always very well informed. One wants to make quite sure that one takes account of that opinion before coming to conclusions.
  (Lord Sainsbury of Turville) Yes. I think, though, that we were very keen that we should not repeat the very good job that the HGAC did for us. Our aim is not to repeat that work but to get some very precise advice which will build on that work and take it forward.

Lord Jenkin of Roding

  20. I was very glad to hear Ms Cooper say that there were those who supported the 1990 Act but might have some reservations about this latest proposal. I think I would include myself in that category. I spoke and voted on the Bill in 1990, having been educated by you, my Lord Chairman, on the purposes. Was not the essence of the then Government's handling of the Warnock Report which led to the Act the fact that they allowed it, as it were, to be a subject of quite prolonged public debate? I think there were three years or more between the report coming out and any attempt by the Government to bring the matter before Parliament. That meant that, by the time it reached the House, both Houses, for the first time when there was a vote on the issue of the use of foetuses in research, there were very large parliamentary majorities for the research. As I understand the Government's response on this—and I have a good deal of sympathy with it—it is in order to give time for the public to catch up. In our report that we are still considering on science and society, which I chair, one of the things that we have been aware of is science running well ahead of the public's ability to understand and give assent to what is being done. We really do need to bear that in mind. I heard a very nice phrase over the weekend: "Communication involves ears as well as mouths". I think if that is what the Government are seeking to do and will follow up with the CMO's report, it seems to me that would have some merit. Bearing that in mind, just one final question: is it not just delegated legislation that is necessary? There will not be the full process of parliamentary debate with bills going through committee and report stage. Is that correct?
  (Ms Cooper) As I understand it, in order to implement the HGAC/HFEA's recommendations would involve regulations, so would involve secondary legislation—if I am incorrect on that, obviously I will write to the Committee to inform you—affirmative regulations which would have to be debated in both Houses.

  21. One debate in each House?
  (Ms Cooper) Yes. However, obviously we still await the Expert Advisory Group's report to see what they advise. So certainly either way there will need to be a debate in both Houses in order even to change the legislation in the way that the HGAC and HFEA suggest. You are certainly right that science cannot run away from public opinion and that the public need to be involved in the debate about all these issues. As I said before, I think that we are still at an early stage of that debate because a lot of people are not aware of the nature of these new technologies, of the potential benefits, of whether there are any alternatives. All those things have not been fully aired and been discussed publicly and I think they need to be. In part, I would come back to my answer to Lord Haskel's question about the role of the HGC in actually promoting that debate. I think it would be wrong for us simply to say we just sit back and wait for the debate to percolate without actually trying to encourage debate about these issues, and that is what I believe the HGC should be doing.

  22. May I follow this up? When the CMO's Committee looks at this question, as the Lord Chairman raised right at the beginning, the phrase "therapeutic cloning" is really open to wide misinterpretation; and the phrase that you use in the Department of "cell nuclear replacement" seems to me to be a much more accurate description. One remembers that when nuclear magnetic resonance first came in there was a terror about it because of the word "nuclear". It then became MRI and is now widely accepted as a perfectly normal diagnostic or treatment facility within the Health Service. Names actually are very important to the public.
  (Ms Cooper) Yes. I certainly hope the Expert Advisory Group will look at all those things.

Lord Walton of Detchant

  23. I wholly agree, of course, with Lord Jenkin that the word "cloning" should never have been used in this context because it is not cloning as most people understand the term. I also should point out that, when the 1990 Act was passed after the Warnock Report, it actually was introduced to regulate research which had already begun. The idea of these procedures we are now considering is to allow under that Act, by regulation, procedures which have not yet been carried out in this country. It is, however, important to recognise that the difference in an ethical sense seems to me to be minimal. After all, under the 1990 Act it is possible to study embryos within the first 14 days to determine whether or not the gene responsible for a disease such as cystic fibrosis or muscular dystrophy is present and to implant only those embryos which are free from those genetic disorders. When I was personally involved in research into neuromuscular disease over many years I saw many patients with mitochondrial disease. These disorders are rare but they produce devastating evidence of brain damage, often epilepsy, paralysis and eventually progressive muscular weakness leading to a fatal conclusion. This kind of research would allow a woman's nucleus from one of her donated ova to be introduced into another cell from a donated ovum from another woman in order to allow her to have normal mitochondria. Do not forget that particular embryo so created would have 99 per cent of her DNA because only one per cent of the DNA is carried in the mitochondria responsible for these devastating diseases. Frankly, I do not see that is in principle ethically a very different situation from that relating to research carried out under the existing Act. It could prevent a number of very damaging and fatal diseases.
  (Ms Cooper) Certainly I recognise that point of view. The Government have not taken a position on these ethical issues at this stage. That is one of the things where we want the Expert Advisory Group to explore some of these issues in more detail. What I want to point out by raising these ethical considerations is that I think they are complex. Whilst I certainly respect Lord Walton's point of view on this, obviously there are other points of view as well. Some people argue that, yes, the ethical step is very small; other people argue that the ethical step is very big. Some people argue we should not take that step at all; some people think it is a difficult step but on balance, given the other ethical considerations, we should take it. I think all these are important points of view and need to be considered and need to be fully publicly debated. That is not in the slightest to denigrate the other ethical arguments that are in place. It is simply to say that I think these issues are very complex and the role of Government obviously is to take a balanced view, having considered these carefully.

Lord Tombs

  24. It does seem to be the case that the sheer complexity of some of the issues we are discussing today and the unfamiliar and far-reaching effects that they promise gives the opportunity for single-interest groups to develop very focused arguments, not necessarily always balanced, which are attractive to the press. The thing that has been exercising us in another forum is how to try to offset that. One needs a champion for this, a voice of interpretation somewhere. Should that rest with the researchers or is there a case for an independent body? Clearly the regulatory bodies like the HFEA cannot do that, they have to weigh evidence, but there does seem to be a lack of focused response to many of the international centres of concern. Do you have any ideas on that?
  (Ms Cooper) Yes. I think this needs to be a matter for those who feel strongly about any of these issues to come forward and champion them if they feel that their views are not being heard properly or the benefits of the new technologies or the complications involved, whatever it might be, are not fully being heard. I think it is a matter for them to become champions if that is something that they feel is important. As you said, I think it would obviously be inappropriate for the regulatory bodies to do so and I think in general it would be inappropriate for government bodies to take a one-sided view of any of these issues. Obviously the role of Government has to be to take a balanced view, weighing all the issues in consideration, and also very much to make clear to the public that the role of Government is to provide objective information and to make balanced judgments rather than to be particularly promoting one side of the argument rather than another. Especially given the earlier discussion about public trust in these areas, that is something that the Government have to keep in mind at all times.

  25. I agree with much of that. The problem is that the people promoting research or engaged in the research are necessarily involved in the narrow aspects of that research and not necessarily the ethical ones or the public apprehension ones. Also, they may be perceived as self-interested, and so it may be there is a case for some external body that can co-ordinate these views. The Royal Society have taken views in some instances and there may be room for expansion there of that type of activity perhaps?
  (Ms Cooper) To reiterate, I think that would be a matter for them. It would be wrong for the Government to encourage or comment on a particular side of it like that. I am aware that in other countries other groups, perhaps patient support groups, play a different role or have been more articulate on some of these issues in terms of contributing to the debate, but again I think it is not a proper role for the Government to do that.

  26. It is a proper role for Government to be concerned about it?
  (Ms Cooper) Certainly.

  27. And to be searching for a solution?
  (Ms Cooper) Certainly a proper role for Government to promote informed debate and provide information and to encourage providing that information.

  28. And to be concerned about the present existence of somewhat biased presentation?
  (Ms Cooper) Yes. I think again that is a matter for people who feel that their voices are not being heard to decide if they want to come forward and become champions, as you say.

Lord Walton of Detchant

  29. While appreciating all the anxieties and the need for extensive consultation, which all of us agree with, has the Government a formal timetable? When do they expect the CMO's report? One reason for anxiety is that there are some dedicated research workers who are actually contemplating moving overseas in order to carry out this particular programme of research.
  (Ms Cooper) The timescale for the CMO's Expert Advisory Group is that we expect them to report to ministers in February 2000. They have, I understand, met three times now and taken 100 responses and are currently considering those responses. One of the issues that they were asked to look at was the timescale for potential research in this field and what the particular timescale would be, what the demand was to take forward research in any of these areas. Perhaps I could ask Dr Troop to make a few further points about the nature of the research and the timescale?
  (Dr Troop) Yes. My understanding is that there is only one licence from the HFEA on stem cell research in this country and that is going ahead at the moment. The feedback from the Committee is that they have had discussions with many of the scientists and they feel at the moment that the timescale of the Committee will not hold up their research. They are able to do sufficient basic research. It is being able to take that research further.

Baroness Warwick of Undercliffe

  30. Just very quickly to follow up the point, we all seem to be recognising the difficulties associated with the public understanding of science. It seems to me that in one or two of your answers you also seemed to be implying that there was a problem of scientists understanding the public. Could you say something about that and also about the role of scientists in presenting clear and authoritative information without the so-called political spin that might be needed in order to respond in the way you seem to be suggesting?
  (Ms Cooper) Yes, scientists have a role in providing proper information publicly, and the Chairman is probably one of the experts in this field in terms of communicating to the public on scientific issues. It is worth saying that I think from the public point of view scientists probably have more credibility than politicians in talking about a lot of these issues and communicating about them. I think that the debate certainly needs to be a two-way one and that it needs to involve everybody, not simply the experts working in the field who are particularly involved in the research but also people right across the piece, people who come new to the research for the first time, who do not know very much about it and who might be concerned about some of the ethical considerations or about the medical research itself. So I think, yes, there has to be a two-way process, and, yes, I think the role of scientists is crucial in terms of being part of the communication and not simply having politicians as the intermediaries between the scientists and the public. Again, hopefully, that is the role that the HGC will be able to play to improve matters in that area.
  (Lord Sainsbury of Turville) I do think it is very important that scientists do talk about the benefits and the potential benefits of their work in this area, so that they are seen to be concerned very deeply with these issues and not simply about the scientific excitement and interest. Everything points to this being what people are very much interested in: what are the benefits of this which can be set against the risks and the problems? So I think that it is very important that scientists do talk about the benefits of their work as well.

Possible NHS-wide Genetic Database

  Chairman: I was just about to offer Lord Sainsbury the last word and he has provided it, thank you. We had better move on to genetic databases. There has been a growing interest in this, I suppose, since the Iceland proposal. Lord Soulsby, would you like to kick off?

4   Management of Nuclear Waste, 3rd Report 1998-99, HL Paper 41. Back

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