Examination of Witness (Questions 20 -
39)
WEDNESDAY 24 JANUARY 2001
PROFESSOR MARTIN
BOBROW CBE
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.
Chairman
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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