Examination of Witness (Questions 40 -
WEDNESDAY 24 JANUARY 2001
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?
(Professor Bobrow) I cannot answer that, I have no
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,
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.
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
(Professor Bobrow) Would that be all right? Yes.
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
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.
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.
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
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.
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
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.
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
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?
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.