Select Committee on Science and Technology Minutes of Evidence

Examination of Witness (Questions 40 - 61)



  40. That will be helpful.
  (Professor Bobrow) I think it is very appropriate for Government to get expert advice both in order to fill in the factual background, because many of these things in the end are not just opinion, they are opinion based on fact, and I think it is very reasonable for Government to get expert groups to outline options for policy and implications for policy. I do not think anyone other than Government should make policy.

  41. From what knowledge you have, do you think that Government is sufficiently providing the resources, the back-up, for the organisation to function well?
  (Professor Bobrow) The HGC?

  42. Yes.
  (Professor Bobrow) I cannot answer that, I have no idea.

  43. Have you not spoken to any member of the HGC, from your conversations?
  (Professor Bobrow) Less than you might think. I do know some of them personally.

  44. But you were a member of its predecessor.
  (Professor Bobrow) I was, yes.

  45. And you were a member of the sub-group of this organisation. I find it astonishing that you have not actually spoken to anybody?
  (Professor Bobrow) It is a different group of people, and I have done my bit and they are doing their bit, and they did not snap at my heels before and I think they deserve a reasonable amount of space without me lobbying them now. If you are asking, do I think that the amount of resource that was put into, that is, resource in terms of the infrastructure and assistance that was provided to the previous HGAC, I would say, no, I do not, I think that it was underresourced. And I think that that limits the speed with which one can examine complex issues, and I think it limits to some extent the quality of the work that comes out, in the end. But whether that has changed, I honestly do not know. I have not asked people how many there are helping with the drafting, or whatever.


  46. But you have not heard either moans from people who are on this new body, and it is likely that if they were very dissatisfied you would have picked up vibes of dissatisfaction, because they spread a lot faster and more powerfully than vibes of satisfaction. So the fact that you have not picked up vibes of dissatisfaction perhaps, in itself, is some sort of signal?
  (Professor Bobrow) I would think that it would probably really be better to ask someone who is on the inside that question, Chairman. Academics are academics, the people I know are the academics; for academics not to be complaining would be so unusual as really not to be worth discussing.

Dr Gibson

  47. But you would agree the new Commission has got a wider range of people on it than the previous one, they have brought in other groups; disabled groups, and so on, are represented on it now? So, in that sense, it is an improvement?
  (Professor Bobrow) Yes. I have no trouble with the composition of the HGC, the question was their output, that Dr Kumar was putting in.

  Dr Jones: Again, looking on that point, it would be helpful if you could perhaps let us know what resources were available to the Committee that you were a member of, and in what way you thought it was inadequate. Did people moan about the inadequacy of that Committee?


  48. This could be a written submission, at a later date.
  (Professor Bobrow) Would that be all right? Yes.

Dr Jones

  49. And the other thing is that I was intrigued, earlier, when you said that, you referred to the group that drafted the Human Genetics Advisory Commission report, they had had discussions with the insurance industry. Now I can understand that a committee would have a secretariat to do the drafting, just as we have here, but I was perturbed at your suggestion they also did the questioning and the information-gathering, and that this was not subject to scrutiny by the Committee. Could you clarify that point, because you did rather give that impression, that `they' had the dialogue, rather than that `we' had dialogue?
  (Professor Bobrow) The HGAC spawned several sub-groups of members, with secretariat support, to look specifically at different issues; one of those sub-groups looked at genetics and insurance. It did that with the assistance of a number of extremely hard-working but inadequately provided civil servants, attempting to keep up with the work. That group of members had dialogue with the insurers and a large number of other interest groups. There is a substantial body of evidence taken, over really rather a long period of time. And that group of members, with the assistance of the secretariat, drafted the report. So it was the other way, it was that the members were drafting rather than that the secretariat were questioning.

  50. Thank you for that clarification. Turning to the Genetics and Insurance Committee, which was established on the recommendation of the HGAC, what exactly is its role, and is it carrying it out effectively, in your view? Is it asked to judge the accuracy of tests or its relevance to insurers?
  (Professor Bobrow) Specifically, the latter. I do not have the terms of reference in front of me, but the remit is specifically that they should judge the appropriateness of using genetic tests for the purposes of particular insurance products; that was the recommendation from the HGAC, and that is largely written into the terms of reference of the Genetics and Insurance Committee. So they are meant to look at both the reliability of the tests and their predictive capability and all the other issues that we are speaking of here, and come to a balanced judgement as to whether it is reasonable to use this type of genetic information in relation to a specific insurance product. That is my understanding of their brief. They have made only one judgement, which is the one that has dominated the conversation and led us to talk about this one disease all the time.

  51. On that particular one, on what evidence did they base their decisions and were their conclusions subject to peer review, as had been the recommendation of the HGAC?
  (Professor Bobrow) My understanding, and I can only speak as a member of the public here, is that they took evidence from a variety of sources, that they laid themselves some criteria that they believed needed to be satisfied before agreeing a test. The basis on which they laid those criteria is something that I do not understand, and I think might be part of the reason for the judgement, that they set themselves a criterion, and I am speaking from memory and may have it a bit wrong, that if a genetic test led to an average increase of 50 per cent in predicted mortality, or something of that nature, then that test was sufficiently robust to be useful in a life insurance context. And I do not really understand precisely why those figures, or that type of criterion, it was not what I would have had in mind. Having done that, they fitted the data they had on this particular test to that model and decided that they would agree it. I believe that the information that they were given, obviously, predominantly from the ABI, on the actuarial side, I know was sent to an independent external referee, because that information either was on the website or was easily obtainable from the Department of Health via their website, if one asked, they certainly sent it to me, it was one external referee's opinion from an actuary. And my recollection is that it was a rather mixed reference; if I had had that on a grant proposal I would have gone back and looked at it all a bit more carefully. But that is a personal view.

  52. So there have been criticisms that the basis of their decision was not properly peer reviewed, and therefore would you agree with that criticism?
  (Professor Bobrow) I am not very comfortable with the decision that they made.

Dr Gibson

  53. Human genetics has come a long way over the years, when it was perhaps just one lecture in a basic 20-lecture course, we have learned a lot more. But do you think that the regulation and the interaction between different Departments: the Department of Health, OST, etc., have kept pace with that and made the judgements in a complementary way, or is it still very fragmented, in your experience?
  (Professor Bobrow) To say that there is a really detailed interactive meshing, well, that is a hard thing to achieve. I am not aware of any instance in which different parts of Government machinery moving in different directions have been a source of trouble. I have obviously agreed with some decisions and not agreed with others, but I do not think that they have been ascribable to a lack of co-ordination between Government Departments. I think, in particular, a bit with the HGAC but particularly with the HGC, the relationship between OST and the Department of Health, which is the lead Department, does not seem to me to be a matter that has given me any concern.

  54. Could you see a situation where that might happen, looking down the line?
  (Professor Bobrow) It is difficult, in that one is dealing with an area where health is the responsibility of one Department, and insurance, insofar as it is anyone's responsibility, certainly is not the Department of Health's, and so you may well have rather different groups whispering in the ears of rather different Departments. But I am not sure that I see that at the moment as a major obstacle. Could I put an addendum to the conversation I was having with Dr Jones. I would want to be very careful not to leave the impression that I am anything other than cognisant of the excellence of the people I know who are members of the Genetics and Insurance Committee, I do not know all of them; the ones I do are colleagues that I would regard as being extremely able and competent. So I do not want to leave a feeling that I am having a personal hack, I am not.

Dr Williams

  55. I would like to ask a little bit about public confidence in genetics and in your work as a clinical geneticist. There is a lot of publicity, some of it very exciting and positive, in medical advances, some of it a little bit negative, perhaps in cloning, or visions of things that are not going to happen. Do you find that that impinges, in fact, in any way, on your client base, and people coming to see you?
  (Professor Bobrow) Yes, definitely. That is not necessarily a negative comment, in fact, it is predominantly not a negative comment. A particular example, as I think I put in the page or two that I wrote, is that it is really common for people coming into a clinic to ask about issues like insurance, it is not an uncommon event; they read the newspapers, it is what people do. It is really quite common for people coming into a genetics clinic to walk in with a bundle of print under their arm, from a variety of Internet sites, and to know rather more about the disease than I do. I regard that as utterly positive. So I do not have a difficulty with that.

Dr Gibson

  56. But is it always accurate?
  (Professor Bobrow) No, of course, it is not, but it is a good starting-point for a conversation. I suppose that a greater concern might be the people who do not walk into the clinic, and just make do with the print-outs from the Internet, who could really get given some nonsense; but, mostly, at least the people who do come into the clinic come in with a background of information, rather specific questions. And, even where they have got it wrong, it is much easier to correct someone who has formulated a sensible question and got it a bit wrong than to start giving second-year biology to a chap who has not done first-year biology, under stressful conditions, in half an hour.

Dr Williams

  57. Do you find then that you have got a rapidly expanding client base, as it were?
  (Professor Bobrow) I think that the interest in genetics in the population, and the sick population as well as the well population, is undoubtedly expanding, and I think the impact in medicine is expanding, and the reason I am giving you a slightly long answer is that not all of those people land up in a genetics clinic. For example, a family with cystic fibrosis might have a very satisfactory and perfectly reasonable conversation with a paediatrician and never get to us, because they do not need a geneticist, they have got all the information they need from their paediatrician.

  58. But are there some people out there who should be coming to see you that may be prejudiced against, partly because of some negative coverage?
  (Professor Bobrow) I think that is very possible, although I do not have specific information on that, and it is rather a hard thing to prove.

  Chairman: A final question then from Dr Iddon.

Dr Iddon

  59. Apologies for having to leave briefly just there. We understand, Professor Bobrow, that the Medical Research Council and the Wellcome Trust are planning to create a data base of approximately half a million people, holding information on their general health, life style and genetic sampling. Do you think the idea of creating that database may be compromised by the reasons we have had this meeting today?
  (Professor Bobrow) It is certainly a source of concern. Collecting half a million people who are willing to volunteer, I think, one is likely to achieve; however, the essence of a population study of that sort is that those who volunteer should be as representative as one can reasonably make them of the overall population. So one is very anxious that, if a study of that sort was mounted, it would be hugely expensive; one wants it to be seen very positively, with a very high take-up rate, a very high consent rate, and not seen as something with negative overtones, that only very selected groups of the population would participate in. I do not think we are in that position now, in fact, I would not want to overplay that at all, but I can see that, over a period of time, constant bad publicity, and raising of fears of this sort, might really compromise studies of that nature.

  60. Genetic research, of course, in this country has a very high international standing, and I am sure all members of this Committee are very proud of that fact. Do you think the way the insurance companies are taking an interest in genetics research in this country might damage that international standing in any way? I am sure members of this Committee would hope not.
  (Professor Bobrow) I cannot see how, other than the conversation that we had a few moments ago, actually by making the research itself more difficult, and adding to a climate of rather negative public feelings about medical genetics, I cannot see a direct impact from insurance decisions on the quality of science. And I think it is worth re-emphasising the point you raised a few moments ago, that making genuine medical capital out of the science really does not happen in laboratories, it happens in clinics, and it requires willing participation, voluntary, consented participation, from members of the public with diseases, and things that may compromise that, I think, are genuine causes for concern.

  Chairman: Dr Gibson, a very quick, last point.

  Dr Gibson: Do you think, when people think, they have got the gene, that it is genetic, that is it, they feel that it is final? And is that amplified by newspaper reports that there are genes for homosexuality and genes for Socialism, and Toryism, and all that kind of stuff? Do you think that debases the whole thing?

  Sir Paddy Ashdown: Why are there none for Liberalism?

Dr Gibson

  61. Because they have not found it yet.
  (Professor Bobrow) I have not read that last debate. There is actually evidence for what, the trade jargon is genetic determinism, you have got the gene, you have got the trouble, and there is evidence that it makes people somewhat defeatist about life. As you know very well, most of that stuff is entirely unjustified, on scientific grounds.

  Chairman: On that speculative note, I think we will finish, because I think it is the only speculative part of the evidence we have had today. Professor Bobrow, you know of our inquiry, you know we are looking into genetics and the insurance industry, and although we have called for a lot of written submissions and we have received them, they have been very helpful, this is the first oral evidence session we have had in this brief, short inquiry. May I thank you, on behalf of the Committee, for being a breath of fresh air; you have given evidence in a way that has been very, very helpful to us, you have given it with fluency, most important, you have given it with clarity, you have helped us a very great deal. You are going to send us one letter, in due course, on the one point that we asked about. But we are very grateful. Thank you for taking the time away from your lowly-paid job in Cambridge and coming here to help. We are very grateful. Thank you.

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