Examination of Witnesses (Questions 1046
- 1059)
WEDNESDAY 24 NOVEMBER 2004
PROFESSOR ROBERT
EDWARDS, PROFESSOR
CATHERINE PECKHAM
AND PROFESSOR
HENRY LEESE
Q1046 Chairman: Thank you very much,
Professor Peckham, Professor Edwards and Professor Leese for coming
to help us with our inquiry. No doubt you have been hearing and
reading of some of the events that have been taking place and
some of the issues we are trying to address. You know that we
feel it is time to revisit some of these questions and I hope
you will agree, and that is why I am going to start opening the
questions up by saying that if we look forward 25 years, and let
us assume we are all going to be here then, what do you think
are going to be the capabilities and concerns of assisted reproduction
practitioners? What are they going to be worried about, and concerned
about?
Professor Edwards: Your question
is very timely, Chairman. We have just had a meeting at the Royal
Society where one of your members was present, and many people
said what they saw coming. They see coming much wider use of pre
implantation genetic diagnosis, a method which runs into great
problems with the disabled, and also gene injections. Now, what
we call pre implantation genetic diagnosis, PGD for short, is
now exploding, since the genome project came. Literally every
gene can be analysed, I suppose, in the early embryos; I do not
know any reason why it should not, so suddenly we can look for
many genes that we did not even know existed. Already, it must
be a hundred diseases that are being treated. In Cyprus, for example,
the government has joined in a trial of B-thalassaemia, because
Verlinsky and Kuliev, who are from Chicago, signed a deal with
them that they would score all the embryos of people carrying
the gene and transfer non embryos in an attempt to rid Cyprus
of this terrible disease. So far twenty babies have been born;
none have been affected. It will continue, and I think they will
clear Cyprus, ie Greek Cyprus, of this disorder. Also, you could
never do late on-set diseases—cancers, Alzheimers. You are
entering difficult areas here because if you diagnose the embryo
and define it as Alzheimers, then the parents know they have it
which is not a fact they wanted to hear. In fact, many of them
would rather not know. They just say "transfer the right
embryo", so do not tell them anything. So this is where we
are going.
Q1047 Chairman: So there is a flurry
of information coming at us. Do you think we are ready for it?
Do you think we are set for it, or is the science moving too fast
for the changes, the regulations?
Professor Edwards: I have faced
this question all my career—
Q1048 Chairman: I know that.
Professor Edwards:—and every
step we had to come down here to Parliament or go on television
or do what we could, and at times people were very hostile to
us. We came through that. Even James Watson, the DNA pioneer,
is now satisfied that what we did was correct and ethical, and
he did not at one time think that. So it took about twenty years
to get the idea over, and I think the happy event of the birth
of Louise Brown was very decisive in this matter. I was speaking
to Leon Kass who is adviser to President Bush, and he was very
anti us but when Louise Brown was born he was totally converted,
he said, in a meeting. They even now have two IVF babies so he
is more than converted. I think the same with PGD is happening
now, because these diseases are terrible diseases. If you look
at some cancers, you see the pedigree is riddled with deaths—not
one cancer but several. If you have a tumour supressor gene which
has mutated the lid is off for cancers so that has made a terrific
impact on many families now, and what can be done on the simple
genes for cancer is being done. So I think it will swing round
to us, and in the meeting that we had at the Royal Society, one
or two philosophers were saying that if these stem cells are used
and people get better, or maybe get better than they were before—it
depends what kinds of cells you put in, the parents who have not
done it may find their children are handicapped in comparison,
not handicapped in the sense we take it but are running behind
those who have gene technology. So when you say 25 years, that
is a long time in science—
Q1049 Chairman: Should I have said
five?
Professor Edwards: What I am saying
may be starting in five years I would say, not 25, so I think
we are entering a different world and one philosopher said that
the major future for human kind was not space research but examining
ourselves and looking at ourselves, and making this a better world
to live in.
Q1050 Chairman: I think we would
all agree with that but my question really is are we up for it?
Is the regulation ready for it? Are the powers that be sold on
these ideas that you are putting forward and are aware of this,
and are they going to do it or are we just slow?
Professor Edwards: I think people
are aware of it, and I think they will become more and more aware
of it. Public awareness runs ten years behind the science, I would
say. To give an example IVF took ten years and now it is everywhere,
so I would say that whereas PGD is coming very fast when we hear
about designer babies and children and things, it is coming very
quickly indeed. It is getting an excellent press, and patients
are queuing up for their treatment, so I think awareness is coming.
Q1051 Chairman: Before I ask your
colleagues to come in too, can you just tell me about the issue
of choice in this arena? Do you think there is enough choice available
for individuals to make that decision?
Professor Edwards: I am sorry
to say I am shocked at the support given to patients in the United
Kingdom compared with my colleagues in Europe.
Q1052 Chairman: Could you amplify
that, please?
Professor Edwards: We have just
reluctantly given one free cycle of IVF. Belgium gives six; Germany
gave three but it is now bankrupt so it has gone down to one;
France gives four; Sweden, Finland give a lot—I do not know
how many. We and the United States are terrible. Our scores are
far lower. In Finland, for example, I think now well over 3% of
all births are IVF; Patrick Steptoe and I thought it would be
8%; it is heading that way. If you add PGD on it will be more
still, and then when you come to stem cells this afternoon there
will be more still there. I think we have not treated our patients
very well.
Q1053 Chairman: I am sure we will
take that up. Professor Leese, Professor Peckham, would you like
to amplify that? Do you disagree?
Professor Peckham: I would say
one of the prime things would be to reassure the public that these
technologies or procedures are safe and we need to have systems
up and running to be able to address that and this certainly came
out of the recent MRC working group. The public need to know that
technologies are safe and are properly evaluated because unless
you know that—
Q1054 Chairman: Are you suggesting
they do not at the minute?
Professor Peckham: I am saying
we have not got the systems in place to look at the consequences
both immediate and long term.
Q1055 Chairman: It is not being done,
is that right?
Professor Peckham: We are moving
towards that but at the moment that is not done and it has not
been possible. With the new information systems that are becoming
available, data linkage systems are going to become possible.
We have to address the difficulties, the ethical issues and the
governance around some of these factors when we are thinking about
monitoring long term, what the outcomes are of some of these new
technologies.
Q1056 Chairman: So you share Professor
Edwards' frustrations?
Professor Peckham: Somewhat yes,
because unless we can reassure people this will not be possible.
Professor Leese: I agree with
what has been said. I share the frustration from the point of
view of the equity issue. PGD is very expensive and I agree as
well that the major implication 25 years ahead for our field is
the new genetics, the human genome project, etc, which has arrived
at the early human embryo. Until three or four years ago we could
not do all the genetics we can now but now we can amplify single
human embryos. What I find very difficult, and I just do not know
the answer, is whether PGD will extend to fertile couples who
have a predisposition for disease in later life, and the Biobank
will come in here providing information on predispositions, so
it will all come together. I think for the infertile it is obviously
less problematic; they have a known susceptibility to a genetic
disorder, PGD. If you have the chance of one in later life, are
fertile couples going to go through this quite traumatic procedure?
I really do not know. On the regulation side, I am quite an optimist
here. I was on the HFEA and, by and large, I think it has done
a very good job and I do not see why we cannot put in appropriate
systems to regulate in this area. It is back to you people, ultimately;
I have always been quite clear about that. The buck stops with
Parliament. Arguably perhaps a few more things might have been
put to you but the HFEA is a body that has performed well. I think
we should see this whole field as an opportunity not a threat.
It can be managed; the opportunity is there. The equity issues,
the affordability, is a real problem but I am quite an optimist
for the future here.
Q1057 Dr Iddon: I want to pursue
the tension that we believe exists between the HFEA and research,
and you, in a way, Professor Leese, answered my first question
but I would like the views of our other two witnesses. Do you
think the development of IVF and PGD, which I understand predated
the Act, would have been possible had the Act been in place at
the time, and of course we have one of the pioneers here today
so perhaps we should ask you, Professor Edwards.
Professor Edwards: That is an
incredibly difficult question. When IVF started there were hardly
any ethical committees in hospital. It was a sort of American
invention that was entering our practice, and when I started working
with Patrick Steptoe we had to strengthen the ethical committee.
It was doing nothing. We had to make it much stronger, and we
had to tell someone else to appoint the people otherwise we were
biasing it towards ourselves. I think in those days you talked
to your colleagues and your friends and your doctors and you decided
things were safe and you had to make a lot of decisions by yourself,
and this is what we had to do, but at every step we took immense
advice from everybody. For example, from Chang who was working
in the States, who had large problems of IVF in mice; from epidemiologists
and terotologists who all told me to go ahead and that what I
was doing was safe. So I never had any problem on the safety issue.
I think in committees today, if you gave them the same evidence,
they may just agree with me. If we could imagine they were now
re-invented I think they probably would agree that it was safe,
or that it would be safe to go ahead.
Professor Leese: I agree with
that quite strongly. I served for two years as chair of the working
group on the HFEA that is now called something else that dealt
with research applications, and I have been asked, "If you
had received the application from Professor Edwards and Steptoe
in the mid-70s 'Can we go ahead and attempt to produce a baby",
I think the answer would have been "yes", with cautions
thrown in, etc, because there was a very strong evidence base
going back 60 or 70 years. The first embryo transfer was carried
out around 1900. There had been a lot of work on mouse, rabbit,
primate models. It had been shown that you could create human
embryos in a dish; to the best of our knowledge it was time to
proceed with caution and do it, so I think then the evidence base
is pretty strong. For some of the recent things the science has
been moving fast. We did our best on the working group; we took
the best evidence we could, and maybe later on I could give you
specific examples if you like, but there is general recognition
the evidence base is not as robust as it should be. The field
has been largely techniques driven, I would say; things like intra
cytoplasmic sperm injection, PGD itself, biopsy, cryopreservation,
etc, largely about techniques, and the underlying science has
to catch up, and we were struggling against the lack of good evidence,
of safety and efficacy when I was a member of that Committee,
and I think the implications of the report that Professor Peckham
has produced will strengthen the evidence base immeasurably, and
that is why I support it. But I think in the original case the
evidence was good enough to proceed.
Q1058 Dr Iddon: Perhaps we should
have the view of Professor Peckham?
Professor Peckham: I would say
we need to strengthen what is in place and I think the HFEA have
done a very good job, but they are not a research organisation.
We need to make sure that the evaluation of the new technologies
is underpinned by scientific evidence and that we can build on
that and feed back into the loop and identify areas of research
that need to be addressed and pursued, and I think this is happening
in other areas. It is not just assisted reproduction. Any area
that involves interventions, technologies or drugs in pregnancy
you need to address and look at the scientific overall evaluation
of what you are doing. Assisted technology has become increasingly
complex, increasingly difficult, and I think it needs a much stronger
structure to underpin it and build on what is already there, which
I think has been very good.
Q1059 Chairman: Have the social values
that set the 1990 Act changed as well as the science?
Professor Peckham: Yes, but I
think there are clear needs for change, because many of the issues
addressed such as the long-term consequences, on the health of
the child and the mother, are not possible to pursue because the
legislation is such that that information cannot be passed across.
Therefore the database, which is an incredibly rich, quite unique
database, is not being maximised and used to address new questions
which perhaps were not asked in the same way previously. But there
is huge opportunity to build on and strengthen rather than say
that what is done now is not good.
|
