Examination of Witnesses (Questions 208-219)
MR SIMON
DENEGRI AND
PROFESSOR RAANAN
GILLON
5 FEBRUARY 2007
Q208 Chairman: We welcome our second
panel. If I could start by asking each of you, in no longer than
a minute, to say who you are and which organisation you represent
and what is your area of expertise?
Mr Denegri: My name is Simon Denegri.
I am actually not a doctor. I am Chief Executive of the Association
of Medical Research Charities, which represents 112 charities
funding research in the UK, that includes the four largest funders
in the United Kingdom plus many organisations which are also patient
organisations.
Professor Gillon: I do not represent
any organisation. I have been asked to come, so I have come. I
happen to be Emeritus Professor of Medical Ethics at Imperial
College, London, and I am Chairman of the Institute of Medical
Ethics. I used to be Editor of the Journal of Medical Ethics for
some 20 years. I am partly a doctor and partly a philosopher.
Q209 Chairman: Thank you very much
indeed. Can I ask you both, if we may start with you, Simon, why
do you support the creation of human-animal chimeras or hybrids,
or whatever you would like to call these new entities? What is
the basis of your support, and could you, perhaps, in answering,
indicate how many of the charities that you represent are also
supportive of this particular line of research?
Mr Denegri: Yes, I would be very
happy to do that, and thank you for inviting us and we welcome
this inquiry. In terms of current activity by medical research
charities in the UK, there are about 20 of my members currently
funding some sort of stem cell research in this country to the
tune of about £9 million. That excludes the Wellcome Trust
funding, which has been reported to you separately in other written
evidence. In our submission to you we did mention that we had
gone back to our membership to see and to assess the level of
interest in this particular line of research and we have heard
back from approximately eight charities which would be interested
in pursuing this line of work and funding this line of work. They
cover a range of conditions, Parkinson's, motor neurone disease,
Alzheimer's disease, cystic fibrosis, heart conditions, so there
is a broad range of conditions represented there, representing
many millions of people. What I hear back from my members, in
terms of the viability of the research, although we do not yet
know whether it is viable, what they would say is that, against
the background where we have a shortage of human eggs, this research
is potentially valuable in, first, helping us to identify underlying
causes; secondly, to understand disease mechanisms and, thirdly,
as a potential route much further along the way to identifying
possible treatments. They see it as a significant potential for
eventually helping people who are suffering from one of those
conditions I have mentioned.
Q210 Chairman: Are you just buying
into the hype?
Mr Denegri: No. I think what my
members will tell you is that they are suffering from that kind
of shortage in human eggs and it provides a viable route forward
for getting round that problem.
Professor Gillon: I am not a scientist
in this respect, I am a doctor, but it seems to me that there
is quite enough prima facie evidence of the sorts of benefits
from this research to go along with the notion that we should
do it, unless there are strong ethical reasons against it. I do
not know if you are interested but it seems to me that there are
some principles which one can use to try to assess these sorts
of issues, and this one is the principle of beneficence, of doing
good for others. There is another principle, which is you should
not harm others, and obviously these principles can conflict.
There is a third principle, that you should respect people's autonomy,
insofar as that respect is equal for all the people whose autonomy
will be affected; and there is a fourth principle of justice.
It seems to me, that this is quite a useful framework for assessing
moral issues in general, not just in medicine but all over the
place. Combine that with a concern about the scope of application
of those principles, what do they actually apply to, and this
is very relevant in the context of embryos, and that is where
the big division about the status of the embryo comes up. Then,
finally, add to the mixture the extraordinarily difficult issue
of judgment, when these principles conflict, and I think that
gives you a sort of framework, it gives me a sort of framework
and I recommend it in my annual course to others, to try to assess
these issues.
Q211 Dr Spink: There is a lot being
said—you will have heard earlier—about human dignity.
Professor Gillon and Simon, do you believe that human dignity
is best served by doing this research within the very strict 14-day
rule and then destroying the products, or by not doing this research?
Does either of the panel have any estimate of the number of people
who potentially are afflicted by these diseases and could benefit,
if there are some positive outcomes to this research down the
years?
Professor Gillon: As has already
been indicated in the previous panel, the concept of human dignity
is a very complex one and people have different accounts of what
they mean by it. I think that the first of the three offered by
Dr MacKellar is the most plausible one, which is to do with the
autonomy of the individual, the Kantean view of dignity. On that
basis, it seems to me perfectly clear that this sort of research
does not offend anybody's dignity and, on the contrary, may very
well enhance dignity, in the sense that medical treatment does
enhance dignity, of the people who may benefit from it.
Mr Denegri: I would agree with
that. We do not believe that it compromises human dignity, in
a way, because I do not think anything has been suggested that
would not be within the 14-day limit. We do think it is in the
interests of those people, human dignity, of that larger group.
In terms of numbers of people affected who might benefit from
that, if you take Alzheimer's just as one example, there are currently
800,000 people with dementia in the UK, and then, of course, you
are also thinking of their families and their extended circle,
who are suffering from that disease in different ways. Then, of
course, there is the cost in terms of the impact on our healthcare
system and our social care system. I think there is a wider social
benefit there from this particular research.
Q212 Chairman: Simon, you were quite
clear, in answer to my first question, that a significant number
of the charities which you represent are supportive of this line
of research, yet, to my knowledge, and correct me if I am wrong,
in terms of straightforward, human embryonic stem cell lines we
have not seen any major advance in terms of treatments yet. Why
are we not concentrating just on that rather than going down this
side-alley?
Mr Denegri: As I understand it
from my members, there is a clear issue in terms of the shortage
of human eggs, which they are fighting against—if I can
use that language—and that will continue to be pursued.
I think the suggestion is may be that perhaps they may go for
any potential technique at all costs. I can assure you that these
are organisations which are spending public money they have raised
on a daily basis and they will be looking at these sorts of scientific
avenues very rigorously, both internally, as organisations, but
with their own scientific experts.
Q213 Chairman: What I am trying to
get at is, is there no avenue that you would not go down, or do
you see any of these as opportunities to produce cures, even though
there is no clear evidence yet that is the case?
Mr Denegri: No, certainly not
about going down any avenue at all costs, if I can put it like
that. I think that is one of the things which interests me, when
sometimes it is said that, of course, the patient groups for whom
it will be directly relevant will always go for this research
and so will the patient constituency around them. My experience
of working in these charities, where you do have a strong patient
group around you, is, yes, they will want to see research pursued,
very vigorously, but they also see themselves being there as almost
encapsulating society's interest and to ensure it is in the public
interest and being done in the best possible way and within the
tightest regulatory mechanisms possible. It is not without due
concern to what is ethically appropriate and right.
Q214 Chairman: What has been suggested
strongly to us is that, in fact, rather than going down this particular
avenue, if it was banned, as the Government originally intended
when it made its press statement, but there would be a greater
concentration, for instance, on the use of adult stem cells, in
which case there are plenty of those available and that would
be a much more profitable use for your charitable organisations,
in terms of research. How do you respond to that?
Mr Denegri: I think what my members
are telling me is that this is a potential avenue for combating
that shortage, that it will eliminate some of the inefficiencies
in the current process which exist with human embryos, and in
some cases for instance Parkinson's disease, it does offer the
opportunity to create your own brain cells, for instance, which
is not possible currently for obvious reasons. I am not too sure
whether I am responding to your question clearly, but I am trying
to.
Q215 Chairman: I am just thinking,
where there is a limited level of research funds, are you better
going down an avenue where there is some real sense of hope, rather
than going off down another avenue which may turn out to be perfectly
fruitless?
Mr Denegri: They would say, if
they were here with me, that it is an avenue worth exploring and
it looks potentially highly viable.
Q216 Dr Harris: On the original ethical
question about dignity it was also suggested that the `yuck' factor
was something we ought to take into account. I do not know whether
that was ethical or not but can I ask you whether you think it
is?
Professor Gillon: I think that
Mary Midgley's view, which others share, that was mentioned earlier,
is a very important one, to see the `yuck' factor as a yellow
light or a flag waved, or whatever metaphor you want to use. Sometimes
a `yuck' factor is tremendously important, it is very important
to feel `yuck' when you see some person beating up a defenceless
person in the street, you should have a `yuck' factor which says
it is disgusting and appalling and wrong. Also we know that there
are lots of occasions when people's `yuck' factor itself is wrong.
The `yuck' because somebody has a black face, or because somebody
is disabled, and many other `yuck' factors which arise, are simply
morally wrong and we have to educate that they are wrong and we
must educate ourselves not to have these `yuck' responses; so
`yuck' factors can go either way and you have got to think about
them.
Q217 Dr Turner: Who do you think
should decide on the ethical and moral issues; should it be the
HFEA, should it be Parliament, or should patient groups have the
final say? Who do you think it should be?
Professor Gillon: That is a frightfully
complex question. It seems to me that ultimately all moral agents
should decide; and then the question is, when it is a question
of a democratic decision on behalf of others, who is to do it,
and I do not think there is a straightforward answer to that.
My understanding of it is that Parliament is the ultimate decider,
as the other people in the previous session have already said,
but that it can delegate decision-making to other organisations.
As I have understood it, that is what it has done with the HFEA.
It has said, "Within the limits of this Act, get on and then
decide;" and this seems a perfectly reasonable thing to do,
until you come to situations where it is not clear whether the
Act covers it or not. I am persuaded that the Act and the current
legislation do cover it, that if it is the case that it is all
right to experiment on human embryos, as Dr Harris already indicated
earlier on, and then destroy them within 14 days, then it seems
to me simply illogical to say, "But you can't do that with
human chimera, animal chimera embryos." I just do not understand
the logic of it.
Q218 Dr Iddon: Do both of you think
that it is reasonable that the HFEA have held up this line of
stem cell research, probably for over a year, by going out to
consultation, and even at the end of that perhaps they will hand
it over to Parliament for a decision, we just do not know? Is
that reasonable, the delay to the research?
Mr Denegri: No. My members do
not think it is reasonable and my membership would say that we
feel it was allowable within the current regulatory regime, because
that was what was being proposed. Although we welcome the public
consultation around this issue, the delay to the research is not
helpful, it is not helpful to either my members or generally research
in the UK.
Professor Gillon: My response
is that if the HFEA actually does not know what it should do,
rather than delaying by public consultation, then it should ask
Parliament, "We do not know whether this is covered under
the Act or not and whether we have authority to do it; please
tell us." I think that would be the way I would go. I think
the issue of public consultation is a very difficult one. It is
very important to know what the public, whom you represent, actually
think about things, but I think also it is very important to know
why they think about it. The bottom line is not sufficient in
ethics, you want to know the reason that you get to the bottom
line and there is quite a lot of evidence that once you start
asking people the reasons and then you give them potential counter
examples often they can change their minds. A PhD student of mine
did exactly that sort of work, a sort of philosophical and empirical
examination of people's attitudes to ethical issues, and he found
that people changed their minds as they went through the questions
and looked at the difficult questions which followed. It seems
to me that public consultation is actually a pretty difficult
thing to do, and if it is going to be done it should be done extremely
well.
Q219 Dr Iddon: These are very technical
areas to understand and it is just as difficult for Members of
Parliament to get their heads round some of these ideas as other
members of the general public, and we are representatives of the
general public, of course. How do you think we should go about
educating the general public so that they can make decisions on
difficult issues like this?
Mr Denegri: I think there are
a number of ways in which this can be approached. I think it is
true we are suffering a sort of moderate case of the `yuck' factor
at the moment, but I would say also that it has been led perhaps
by some `yuck' leaders and we do not necessarily know whether
the public are in that `yuck' place. We do know that, broadly,
out there, the public support stem cell research, maybe not on
this specific issue we know enough, but broadly, in terms of stem
cell research, we know that they are in support of it. I think
there is a range of mechanisms; there are some very good ones
being promoted by Wellcome Trust and MRC and others, but I think
where the real engagement can happen is through medical research
charities. A lot of the charities which have given evidence to
you, such as the Alzheimer's Society, Parkinson's, motor neurone
disease, have very active public involvement programmes, which
involve patients and the public throughout the grant application
and award process, they engage them in ethical and other debates
around the research that they are looking to pursue and it is
that sort of conversation which I think we should be trying to
generate, an ongoing conversation. I was quite struck by Malcolm
Wicks's evidence to the Committee where he was quite bullish,
I think, in comparison with the Department of Health, about this,
but where he said, "We do need to bring the public along."
I think we do need to bring the public along, Research charities
can provide, as they do already, a real lead on this, they have
done this in terms of animal research issues and broadly in terms
of stem cells, and I think again we can do the same here.
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