Select Committee on Science and Technology Minutes of Evidence

Examination of Witness (Questions 20 - 39)



  20. Are they using that reasonably?
  (Professor Bobrow) If I knew that they were, I would feel comforted. I have asked the question a few times, and I have not had an answer that I have found very persuasive; but perhaps that answer will come out again during the course of these hearings. For a combination of those reasons, I have to say that it seems to me that the attitude that has come from the industry has been predominantly one of, not "There is a common set of problems which we should try to find solutions to," but "We know what we're doing; keep out of our hair." And that is the reason for my slightly depressive tone. Why do I not like legislation; well, because science moves very quickly, and legislation moves very slowly, and, however carefully it is drafted, somehow it has an awful habit of landing up with just the wrong words in the wrong places that do not quite fit, a few years later. So it is a principled feeling, that detailed, tight legislation, in matters that are contingent on fast-moving areas of science, often comes back to bite one.

  21. Do you think that the human fertilisation and embryology model has worked well, because that is enabling legislation which then can be changed by statutory instruments; would you not think that that model would be desirable in this particular case?
  (Professor Bobrow) I think that is a very excellent model, and I struggle to think of a second.

  22. But you do not think we could have a model in this particular case that would work?
  (Professor Bobrow) I did not say that.

  23. You say that you are calling for a moratorium, until further research has been carried out. Are you arguing for a voluntary moratorium from the insurance companies, or should there be a statutory moratorium?
  (Professor Bobrow) I think we have had lots of opportunity for a voluntary moratorium and it has not hatched.

  24. And that is why you come to your conclusion that legislation, even if you continue to consider it is undesirable, is unavoidable?
  (Professor Bobrow) Precisely.

  25. Thank you. Assuming that legislation does not take place, do you think that there is anything that the insurance industry could do itself that would convince you that they were acting reasonably, and what would it be?
  (Professor Bobrow) One; actually stop using tests that have not been widely agreed and validated by definitions other than their own. Two; start really prosecuting some serious attempts to gather data of the sort that were asked for by the HGAC, that is specific actuarial information that would underpin particular types of insurance product in relation to observable facts of biology. Those two things. And I would quite like to have more insight and more information into the use of family history data.

  26. Do you not think that the insurers are justified in pointing to the example of HIV/AIDS, in the eighties, when many sufferers took out large life insurance policies without disclosing their HIV status, and do the potential costs for insurance, and the creation of a level playing-field for insuring a client, not justify the insurers' demands for access to this information?
  (Professor Bobrow) I hope I put in my evidence that I certainly do say, and have always said, that I think the industry have a genuine problem, and that problem could become worse if more genetic information, which is genuinely predictive, does come to light. Were that not the case then the argument, which many other countries have followed, of simply putting down an outright legislative ban on them ever seeing genetic test data, would be reasonable. It is because there is a problem there that I think personally that an outright ban on insurers having genetic information, ever, under any circumstances, would not be reasonable. The question is one of balance, it is a question of the balance of the companies who are entitled to be protected against being taken for a ride, against the general atmosphere of coercion against the great majority of people who are extremely unlikely to do any of those things, that I think is wrong, at the moment.

Dr Williams

  27. I have got just one or two brief ones, arising from Lynne Jones's questions. You said that the human fertilisation and embryology authority was working, was good; is it that the participants in that field are, on the one hand, the legislators and the petitioners are scientists, so there is a dialogue of scientists with scientists, and they understand each other and they can work, whereas in this field of insurance we are dealing with financiers rather than scientists, in the other half of the argument?
  (Professor Bobrow) Gosh, that is probably well beyond my competence. What I had in mind was a rather different point, which I thought Dr Jones was raising, which is that the HFEA is enabling legislation which does not lay down, beyond a few issues that have been aired again recently, very detailed, scientific yeses and noes within the framework of the primary legislation, whereas several other Acts, that have actually tried to write detailed science into legislation, have got outdated rather quickly. So I think it is flexibility in response to advancing science that I am concerned with.

  28. Within the Sub-Committee, was it AITC that you were involved in; were the representatives of the insurance companies in that company?
  (Professor Bobrow) No, they were not represented. It was not primarily a technical committee, the HGAC, it had a wide range of people, but I do not believe there was anyone who was from a financial background. However, the group that drafted the report on insurance took very extensive evidence from a substantial number of people who were actuaries, financial regulators, insurance companies, several of them, the ABI itself.

  29. As I understand it, Norway, Belgium, some other countries, do not allow insurance companies to take account of genetic testing; why is that, and how well is their ban, or moratorium, working?
  (Professor Bobrow) I am not aware of anything very complex in the answer to why is that; they have had this sort of discussion and made a different judgement. How well it is working, I am afraid, I simply cannot answer. If I could put my concern about a blanket ban down, it would be as follows. Firstly, the principled problems that I have spoken about, the science will change and there might be, at some stage in the future, much more serious issues, where all would agree that the industry has a genuine right, because the science has changed so much, to some sort of information. Secondly, insurers at the moment do have access, without contest, to very strong genetic information by asking about family history; how that is interpreted in detail, I honestly do not know, but they do have access to that, every time you go for a life examination, you are asked about your family history. As I understand it, the reality for these diseases and others is that if you do not declare a family history of Huntington's, or whatever it is, you have not declared a germane item of information and your insurance will be null and void; if you do declare that family history, they have you, they know that you are at very high risk, and they do not actually need to do genetic tests to validate that. Therefore, if one is going to try to impose a real ban on the use of genetic information, as opposed to just tinkering in a laboratory test, I think one needs to grapple with the use of family histories, and I do not know any country that has done that. So I see it as a bit of a sham, to be honest, because I think it does not address the real issue, which is the information, it addresses the trivial issue, which is the test.

  30. You say, in your memorandum, that a few years ago there were many examples of poor decisions by insurance underwriters, on the basis of misunderstanding genetics. Can you give one or two examples of these?
  (Professor Bobrow) One that stands out very clearly in my mind was a person who had had a child with a serious inherited disorder; this is a dominantly inherited disorder which passes from family to child. As a result of that happening, the parents of this child were examined extremely carefully; in one of those parents some very minor signs of this condition were present. So that person was picked out, from our point of view, as being a carrier of a gene change which had come in a severe form in the child but which was of absolutely no relevance to the person himself. Yet, in declaring that, he got into terrible trouble with an insurance company, because they simply took the word `genetic', `carrier of bad gene', without understanding anything of the condition, its inheritance, or its manifestation. But that is from some years ago; and there were others of that sort, simply getting it wrong.

  31. Do you think there is a serious risk of creating a genetic underclass?
  (Professor Bobrow) I think there is an extremely serious risk of creating a group of people who see themselves as a genetic underclass, which may be almost as damaging, because they will avoid some forms of medical care, and so forth, or research participation, because of this concern. Whether it would actually turn out that way in practice I think is extremely hard to predict.

  32. But careless use, or poor use, of genetic information by insurance companies is going to exacerbate whatever the problem may be?
  (Professor Bobrow) I think it is a public issue, clearly, or you would not be having this hearing.

Dr Iddon

  33. Professor Bobrow, in your memorandum supplied to the Committee, you helpfully differentiate between tests for medical use, where people are counselled, given advice how to prolong their life, and so on, and there is a real reason for doing the test, set against having a test for insurance, where, of course, none of that happens. You have also said, if I can concentrate on Huntington's chorea again, that the disease can set in early, or later, there was a grey period in the middle, those were your words, and you also said, I think I am right in saying, that you did not know anybody who could predict the onset of the disease. Now I find it remarkable that the GAIC, therefore, have approved this test for use in the consideration of risk, when the parameters are so broad; and I would like you to comment on that. And I also suggest to you that to allow this test to be provided to the insurance industry is very dangerous, in view of everything you have said to us today?
  (Professor Bobrow) I have no particular knowledge of the GAIC's decision and the reasons for that, other than that which is publicly available. It did not seem to me a decision with which I felt particularly comfortable, and I did write and say that, but that is, of course, possibly because I do not have all the facts at my disposal that they had at theirs. I think, at the very least, it would have to be said that I read everything I could at the time, that was publicly available, and if I landed up not understanding the basis of the decision, or not being persuaded, then possibly, if there are other facts, they have not been made as widely available as they might have been. I think it was a somewhat soft decision under difficult circumstances; that is a personal opinion. Is it dangerous; well, I guess it is the same answer, is it not, I would be saying it all again. I personally do not think that the test for Huntington's is one which should be used for insurance purposes at this stage. I think that might be quite different two or three years down the line, but as it is now I think the data are lacking. The argument which has been put forward is that using these test results is a benefit to the families, because having a family history marks you, from an insurance point of view, having a test either confirms that you do have a duff gene or that you do not, in which case you are free from this threat, and eligible for normal insurance terms. If I could just address that one particular point. My view on that, my starting-point, is that what I ask of the insurance companies is that they should use genetic information on the basis of clear, agreed, reasonable, objective evidence. On that criterion, someone from a family who has been tested and is negative, I think the evidence is clear, we all agree that that person is not at risk, and I have no objection to that result being used. What I do object to is the use of the positive results, being used, because they do not predict time of onset and all the other things that we have discussed earlier. So, although it sounds an asymmetry, I actually do not think it is that, I think it is a consistent view that what is required is transparency, openness and evidence-based practice.

  34. Thank you. Would you say that what you have said about Huntington's, because we have dwelled on that quite a lot in this interview, is also true of the other six conditions where genetic testing is possible, to supply information to insurance companies?
  (Professor Bobrow) I think that the dearth of actuarial evidence, of life table type evidence, more or less applies to all of them, although they are all rather different. In some them, there is the additional complication that the relatively recent acquisition of knowledge of the genetic basis and the tests means that treatment strategies and management strategies are being developed, and the influence of those is not yet known, and that applies to several of them. And, in the end, the insurance policy needs to be written, I would suggest, not on the basis of which gene you have got but what your outlook is, and that includes what sort of treatment you are on; and I am not aware of any serious evidence for those conditions that are treatable that would allow that sort of decision to be made today.

  35. As a Professor at Cambridge, of course, you are probably better paid than most academics throughout the country, but you would be even better paid if the insurance companies made use of the knowledge that clearly you have. Therefore, can I ask you whether geneticists, like yourself, are in huge demand, or are likely to become in huge demand, by the insurance companies, to give them the very clever insights that obviously you have? And, if I could pose a second question, is there a danger, if that happens, that the people doing the research will get too close to the people that they are providing the information to, and that could develop into, and I want to use the word `corruptly' softly, but perhaps a corrupt relationship, almost?
  (Professor Bobrow) If I could take those points one at a time. I have a perfectly satisfactory salary, but, by and large, professors at Cambridge are paid less than at other universities in this country, for reasons that we should not go into here; but thank you for the opportunity to say that. I suppose, not at all curiously, I have not found myself much in demand from insurance companies. There certainly is a colleague of mine who does have a specific role as an adviser to the ABI, and no doubt you either know of him or soon will, and that is a very open and clear relationship. I am not aware that there has been a lot of discussion between the insurance industry as a whole and individual geneticists; it is one of the things that rather disappoints me, not quite for the reason that you were suggesting, but because it does seem to me that there is a research agenda and an evidence-gathering agenda which requires a degree of working together, and not an awful lot of that has been happening in the last several years.

  Dr Iddon: Thank you very much.


  36. Professor Bobrow, just before we go to Dr Kumar, you mentioned very early on that you wanted greater insight into the use by insurance companies of family history data. If I go for an insurance policy, they ask me when my parents died and what my parents died of, they are gaining family history data by those questions. Did your comment on family history data refer to the sort of information that I would give in those few words when I was questioned, as well as to genetic information, or was it just genetic information? And, finally, in that question, is the real thing you are getting at whether it is simple information like I would give, or genetic information that might come from elsewhere, is your real point that you want transparency on how information is used?
  (Professor Bobrow) I was referring to both types of data, and my point was precisely as you summarised it.

  Chairman: Thank you very much indeed.

Dr Kumar

  37. Professor Bobrow, the Human Genetics Commission has been around now for a couple of years; it was set up in 1999; and how do you assess the performance of this particular organisation? Let me try to help you here, if the question perhaps is too loaded. The sort of inquiry we are doing today, that if you were trying to assess the moral, ethical and social implication of the inquiry we are doing, do you think the Human Genetics Commission has been able to deal with those problems effectively?
  (Professor Bobrow) My understanding, and again it is an understanding from reading public media, I have no connection with the Human Genetics Commission as it is now, it is a different group of people, under different rules, they have a substantial number of major issues that they could address, and my understanding is that they have a number of these that they are trying to progress rapidly, and a number of others that will just have to wait on a back burner, because you cannot do it all at once. I am not aware that they have actually produced any results of major inquiries to date, but these things do take quite a long time. So I am not sure that I am in a position to judge them until there is some output on which to make a judgement, if I can be as cautious as that.

  38. So you are, what, saying nothing, that you have no opinion on this?
  (Professor Bobrow) I am agnostic until such time as they produce something. I guess one stops being agnostic if nothing ever comes out, but I do think that these are quite difficult issues, and a new group of that sort must take some time to settle down; so I have not reached a point where I would say that they are unproductive, I am just not in a position to make a judgement yet.

  39. Then let me ask you another question. Do you think it is acceptable for Government to delegate the decisions of policy matters to the HGC; surely you have an opinion on that?
  (Professor Bobrow) It is not a geneticist's opinion or an expert opinion, it is a personal opinion.

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