Examination of Witnesses (Questions 780
- 799)
WEDNESDAY 13 OCTOBER 2004
PROFESSOR ROBIN
GILL, PROFESSOR
JULIAN SAVULESCU
AND PROFESSOR
ALASTAIR CAMPBELL
Q780 Dr Turner: If we pursue pre-genetic
diagnosis and embryo selection too far we run into eugenics per
se. Do you consider that using PGD to eliminate a genetic
disorder constitutes eugenics? In any event, do you have views
on the moral validity of eugenics?
Professor Gill: It does seem to
me we want to make a very careful distinction when we talk about
eugenics. What I think most people object to about eugenics is
coerced eugenics. This is political regimes deciding that some
people should not exist or should not continue to exist. Rightly,
that is regarded fairly universally now as being morally deplorable
and as being one of the great shames of the 20th Century. Eugenics
actually just means good beginnings. If you are asking if couples
who are concerned about the welfare of their children when they
know they have a known serious genetic risk—and I would
not go down Julian's path at all, I would want to add the word
"serious" at every point—should be allowed to
have children that do not have that genetic disorder and it is
safe as far as we can see to do that, then my answer is yes. Where
I differ with Julian at almost every point is when we are involved
in medical interventions. I do not think this is simply a matter
of the couple's choice. It involves the medical profession and
it involves other people in doing this. I do not follow Julian's
libertarian line but I do think that the word eugenics does not
resolve the ethical issue. If you are talking about coerced eugenics,
of course it does. If we had a law which said that when there
was a test and they found that the child, for example, had a particular
disease and must be aborted, I would be the first to oppose it.
That would be coerced eugenics.
Professor Savulescu: We practise
two forms of eugenics already, one of which I believe to be acceptable
and the other unacceptable. The acceptable version is when a couple
has a test for Downs Syndrome or any other genetic abnormality
and decides on the basis of that to abort the foetus. It is acceptable,
as Professor Gill said, because it is voluntary, it is their choice
about what kind of child they have. Unacceptable eugenics is where
there is a state blueprint for what kind of society there should
be and that is precisely what we have when we restrict access
to reproductive services through the HFE Act, because what we
are doing is we are saying, "This is the blueprint for society
and you cannot access these technologies in this way because we
deem it unacceptable". That is the spirit of eugenics that
was practised in Nazi Germany.
Professor Campbell: Let us hold
on to the point, which is that there is a debate to be had about
whether there should be some regulation in this area, that is
the debate that I think this Committee is going to continue to
have and then they will determine what they believe is right in
terms of regulation. To then push that to imposing some vision
of the nature of humanity on people is nothing like the current
situation which, if you actually look at what happens under the
current regulation, is quite liberal in terms of where it might
prevent any conception taking place. So it is nothing like imposing
some vision on the future. I find your theme much more frightening,
which is that we are going to bring technology in in some way
that will allow people to try to create well behaved children
in the future. It sounds to me like a Brave New World or
even 1984 in the way that it regards this as using technology
in order to mould or shape human beings in certain ways. It is
for that reason that we should stick with a very simple and ancient
medical principle and that is primum non nocere, above
all seek to prevent harm and that is the one which currently determines
things like decisions about terminations in relation to a serious
handicap which an individual will have. If you start going down
this other line where we are going to judge that, for example,
it is better to be intelligent than not to be intelligent, it
is better to be conformist than not conformist, I think that is
where we are going into a nightmare and we should not go that
way.
Professor Savulescu: When I decide
as a parent to improve the behaviour of my children or to try
to enhance the intellectual abilities of any child I make a judgment
about the risks and the benefits and what I think will make for
the best life of my child. Why is genetic and reproductive technology
any different to all the environmental interventions? We already
accept they have biological effects. These things are not just
things that happen in the air, they affect children's biology.
Q781 Dr Harris: Should we not make
schooling compulsory as well?
Professor Campbell: Analogies
break down.
Professor Gill: The point Julian
has yet to answer is, and it is a point I have made several times
already and he has ignored it every time, that you are involving
other people in this, you are involving the medical profession.
Professor Savulescu: Yes, let
them decide for themselves. You want to say to them you cannot
do it. I am saying as an individual doctor you should decide yes
or no.
Q782 Dr Turner: It is quite clear
that embryo selection is a tool of eugenics in practice. Given
that half of all disease is estimated to be genetic, do you think
that "preventative medicine" implies the use of PGD
and embryo selection as an extension of preventative medicine,
and where would you set the limits on embryo selection?
Professor Campbell: If I could
take issue with the way you put your statement about the genetics
factors in disease.
Q783 Dr Turner: I am just quoting
a document.
Professor Campbell: It is rather
more complicated than that as I understand it. We are talking
about the interaction between predisposing conditions and environment
and lifestyle is an important factor as well. I am about to chair
the Ethics and Governance Council of the UK Biobank where UK Biobank
will be trying to get half a million people's genetic profiling
and records and so on on the understanding that this is highly
complex. One of the dangers—let us not start a dog fight
again—in the kind of argument that Julian is putting forward
is also what some people call genetic fundamentalism, which is
that you think if you get the genetics right you will get the
rest right. That is not the evidence we have about disease. Disease
is a subtle interaction, it is often multi-factorial in its causation
including in its genetic background and for that reason we should
not place too much on the genetic factor. Environment is going
to be very important, the living conditions of people, the chances
for good parenting, schooling and all the rest of it. These are
all factors that will affect whether what was there as a possibility
will become an actuality.
Q784 Dr Turner: But you do accept
its use for serious genetics disorders. Where do you set the limits
there?
Professor Campbell: There are
conditions in which the prediction is more secure. I may still
be wrong, of course. After all, we do have terminations when it
turns out the baby was not affected at all, so you could have
a false positive, but the predictions are more secure in terms
of potential outcome and in that area I feel comfortable. I do
not feel comfortable with the extension of it to attempt to engineer
the future by a whole range of genetic predictions.
Professor Gill: There has been
a persistent worry in Parliament about the role of insurance in
this and there have been a number of Select Committees on this
particular issue. I think what is remarkable about this is that
the confidence with which everybody started, we would be able
to predict X, Y and Z and this would have insurance implications,
has got narrower and narrower.
Q785 Dr Turner: You have been reading
our reports!
Professor Gill: I am afraid so.
Even with Huntington's Disease, which is one of the few that people
really can agree about, the fact is that if you have that gene
then you will get Huntington's. There is no way of estimating
at the moment how severe it is going to be or even when the onset
is going to be. The families themselves with Huntington's in the
majority of cases do not opt for genetic diagnosis because it
is part of their family. So there are a lot of ambiguities there.
I think we should learn from the role of gene therapy. When gene
therapy started there was great confidence this was the way forward.
There is huge ambiguity in that whole area now, both about whether
it actually works and, if it does work, what the implications
are and what the consequences are. I think as an ethicist I want
to be extremely cautious about all of this and I do want the protections
and I do want you to be cautious and not over-estimating what
is achievable now.
Professor Savulescu: Just as genetic
fundamentalism or genetic essentialism is wrong and so is the
idea that everything is environmental, it is clear that there
will be some genetic contribution. Let us take an example that
I have written on. Haemophilia is an x-link disorder which means
that males are affected and females carry the gene. In the service
where I worked there were requests by healthy female carriers
to use genetic selection to ensure that the child that they had
was not a carrier. A carrier will generally be healthy but might
have minor bleeding. We know, as we have seen it, it is a very
mild abnormality. It has a chance of passing the gene on. Here
we seem to have a simple choice: do we allow this couple to make
a choice as to whether to have a carrier or not to have a carrier
or do we leave it to chance? I do not see what the ground for
intervening in that situation is even though the abnormality is
very mild. I do not see what the ground for interference in that
decision is.
Q786 Dr Turner: Germline therapy
is not allowed at the moment but it is a fair medical possibility.
Do you see any ethical differences between PGD and germline therapy?
Professor Campbell: Yes. Clearly
what we are doing is introducing some change which will be passed
on through the generations exponentially, so something that we
might see as apparently beneficial at one generation after about
four generations could turn out to have effects that were not
predictable at the time but, nevertheless, have extremely adverse
effects. I do not think that is the sort of lottery that we should
enter into in relation to future generations. We know how often
science has got things wrong and how there have been quite unpredicted
consequence of scientific interventions. That is why I believe
we are quite right to prevent germline therapy. We are back to
the precautionary principle, Evan. I think in this case nobody
can answer what the likelihood is, that is the trouble. So, you
cannot say, "Give me the evidence that it is going to do
harm." We do not have the evidence and that is the trouble.
We will not have the evidence until that harm has been created
and created across a very wide range of potential individuals
and, for that reason, I think the majority of opinion, scientific
and lay opinion, is that it is just not a road that we should
go down.
Professor Savulescu: Even a libertarian
here can accept regulation because there is a difference between
PGD and germline gene therapy. In PGD, you are selecting between
two different individuals. Say that we are testing for cystic
fibrosis—this one is normal, this one has cystic fibrosis.
We are choosing which child to bring into existence. Now consider
the germline case where we have an embryo with cystic fibrosis
and we try to correct that genetically. If that goes wrong, we
will be harming that future individual. So, there is a potential
for harm which is much greater with germline gene therapy than
there is for selection with PGD. So, for that reason, I would
support regulation in that area. Unlike Alastair, that would not
be a reason to exclude it entirely, it would be a reason to balance
the risks and the benefits because of course, if you have an embryo
with cystic fibrosis and you have the potential to cure that in
every cell in the body for a disease with no cure, we have to
weigh up the risks and benefits because to deny them that intervention
is to commit them to a future of cystic fibrosis. It is not a
question of ruling it out of court, it is a question of evaluating
it at the time.
Professor Gill: When we talk about
germline interventions, it is quite a different thing from gene
therapy in this area. In germline interventions, it seems to me
that PGD is a much more preferable path than any kind of germline
intervention. It is exactly why I do not believe in the possibility
of human reproductive cloning because obviously there is no consent
and I do not think there is any real reason for doing it but,
most worrying of all, you really cannot tell until you do it what
the consequences are going to be.
Q787 Dr Turner: You all seem to make
the same ethical distinction; it is the difference of risk that
matters.
Professor Gill: And it is generational
and that is the problem.
Professor Savulescu: There is
benefit with the generation too.
Professor Gill: Yes, but you can
do it through safer means, PGD.
Q788 Dr Iddon: I want to return back
to welfare of the child aspects which came late into the HFEA
debate of course. What has the suitability of the parents got
to do with this? Why do they have to effectively pass a test of
good parenting?
Professor Campbell: I use the
analogy with adoption here which has its limits. All analogies
have their limits and I was trying to say this a minute ago to
Julian when he was using analogies that do not perfectly fit.
I accept of course that a child born through assisted reproduction
is not the same as a child who is adopted but there are some similarities
in cases where there is a parentage that is other than biological
parents on either one or both sides and we know this from individuals
who have spoken about this, for example in the product of donor
insemination for anonymous donor. We know that some people find
this extremely difficult to deal with and are extremely distressed
when they discover that actually there is, as it were, an unknown
biological progenitor somewhere. That is why I believe again we
have some kind of regulation although I think it is pretty light-handed
regulation but it is regulation that allows the couple to get
outside the privacy of simply the conception that would normally
be our own experience and talk over their plans and talk over
how they see bringing up this child in order that we can minimise
risk to a child of what could be a difficult situation for them.
I happen to be the parent of some adopted children and I do know
that there are extra vulnerabilities there. So, it has not been
done in a heavy-handed way, it has been done in a way that really
is seeking to help cases, now in some cases individuals, not couples,
to think it through before they agree and also to avoid evident
harms. I have seen cases from the clinic in our area in Bristol
where people have applied who have a record of family breakdown,
domestic violence and all the rest of it but they want to have
another child and I think this is an opportunity to say, "No,
we will not do this." There is nothing to stop them in many
situations just going out to a club somewhere and getting pregnant
and we cannot control that but you can control it within the context
of a clinic providing services. I think it is reasonable provided
that we do not think that we are going to have lots and lots of
criteria of good parenting because that would be ridiculous.
Professor Savulescu: At the moment,
we have discrimination against gay couples, single couples and
people with HIV on the basis of people's attitudes to them. As
you correctly infer, these people could have children outside
of the area of assisted reproduction freely, yet we make judgments
about their worth as parents as a category: no IVF for gay people.
Surely that is a decision that should be made on a case by case
basis. Just as Alastair's case of a couple with a history of child
abuse, the doctor has to make a decision about whether to help
that couple. These discriminatory attitudes of putting people
into categories went out 20 years ago, yet we still have them
in place in the area of assisted reproduction. Doctors should
be making those decisions, not legislative bodies.
Q789 Dr Iddon: You have partly answered
my next question but the other witnesses might like to respond
to the question. What are the ethical grounds for in fact refusing
treatment on the basis of several conditions, age being one, sexual
orientation, which has just been referred to, being the other
and marital status? I have to say that the vast majority of my
constituents are ruled out on income grounds.
Professor Campbell: While I am
in favour of regulation, I am not in favour of discriminatory
regulation and I have difficulty with current aspects of the guidelines.
That does not mean it should not happen, it just means how it
should be operated. If, for example, we allow same sex couples
to adopt, as we do, it would be quite odd, extremely odd, to say
that, in that circumstance, same sex couples could not receive
reproductive assistance. I think the whole question of single
people . . . I am with Julian here; we do not disagree on absolutely
everything. I think that what we want here is the chance to talk
it through and consider it on a case by case basis before such
a service is provided. So, it does not have to be discriminating.
Professor Gill: I think one of
the troubles with having a pluralistic society is that, when we
do not have guidelines and we deal with things on a case by case
basis, because we are a pluralistic society, we find it very difficult
to make judgments on an individual basis. I think that is one
of the difficulties that we have. I would want to give some attention,
more than Alastair and Julian have given so far, to widespread
data of the effects upon children of certain kinds of parenting.
I realise that it is a contentious area and that it is one that
is still being debated and I do not have any dogmatic views in
this area, but I do want people to take the evidence seriously.
If our concern is primarily not for the rights and liberties of
the parents but with the welfare of the child—and I think
the welfare of the child must be a prime consideration particularly
if we are involved in medical interventions where we are actually
doing something—then I think that we have to pay some attention
to evidence about different arrangements of parenting. I do not
have fixed answers to this but, if that were missing from your
own perspective, I would think that would be a serious weakness.
Q790 Dr Iddon: Professor Campbell,
you consider that children should be regarded as a gift rather
than as a commodity and there is a danger in the whole of this
argument that some people are looking at children, perhaps subconsciously,
as commodities rather than gifts. With a view to the later child/parent
relationship, does it really matter?
Professor Campbell: Of course,
the criteria here is always what the quality of the upbringing
of the child is, how good the parenting is and whether the child
feels loved and cared for in its own right. That is always going
to be a critical question.
Q791 Dr Harris: And how rich the
family is.
Professor Campbell: And there
are other issues like whether the family can afford to give the
child a reasonable environment and so on. I would not for the
moment want to downplay any of these or want to downplay the importance
of that. Let us go back to the quotation from John Harris right
at the beginning where John mentions harm to individuals and he
also mentions harm to society. I think that we do have to ask
about laws in relation to regulations and in relation to the effects
on social attitudes in society as a whole and the reason that
I am absolutely fundamentally opposed to some of the proposals
that will allow you to, as it were, plan the child of your dreams
using technology is that I believe that that is creating society,
what we have been trying for years to get away with, which is,
"This child is part of my possessions and I am going to have
the best possible child." We go down other lines like you
see in the States, for example, where children are given drugs
to enhance their growth because you want them to be six feet and
not five feet ten inches, or you use Ritalin or other products
in cases where there is no obvious disorder but in order to try
to get your child to achieve better and so on. There are all sorts
of areas in which we can go into engineering of people according
to our specifications. So, that really is the centre of my argument:
it is to say, let us not start going down the line of product
enhancement. Let us go down the line of helping people to become
parents as best we can but in relation to seeing the child as
an individual in its own right, not a creation.
Professor Savulescu: This is a
critical question. There are two views: one is that the child
is a gift that is given to us by chance or by God.
Professor Campbell: I did not
mention God, not once!
Professor Savulescu: The other
view is that couples make a decision about what kind of child
they have and that is what happens when a couple decide not to
have a child with Down's Syndrome or not to have a child of a
certain sex. They are making a decision about the child they can
bring into the world in their circumstances and bring about the
best opportunities for that child. The question is, who decides
that? Is it going to be an authority or is it going to be the
couple themselves? Whatever Alastair says, by forcing chance on
to them, he is forcing his view on to couples. My view is that
they should reside with the couple that has to bring up that child
for 20 years.
Professor Gill: Actually, it is
not, because you have considered the role for a regulatory authority
at several points in your argument. So, we do not actually disagree
with each other but what finally has to be in our judgment is
a mixture of regulatory authority and parental choice. Where we
differ, I think, is where we get the balance, not that you do
not believe in regulatory authority.
Q792 Mr McWalter: If human stem cells
have the capacity to eventually form an embryo or a gamete, do
you think that that means that experimentation on those should
be ruled out even bearing in mind the representations made to
the world community by Christopher Reeve?
Professor Campbell: We are both
involved in this because Robin is on the Stem Cell Steering Bank
Committee and I was on the CMO's advisory group that led to the
amendments to the Act that has allowed stem cell research.
Q793 Mr McWalter: So, you do not
have any ethical concerns about that at all?
Professor Campbell: No, that would
not be correct. I think we should notice that what was said is
not an absolutist position for or against but rather is an argument
for the justification in cases of potentiality of dealing with
serious disease of allowing work, extracting stem cells from embryos.
So, it is not either a total prohibition nor is it open, you can
do anything you like, it is this difficult middle ground.
Professor Gill: One of the points
we have in common as we are all gradualists is that it is not
the only ethical position and, as a religious person, I am conscious
that quite a number, not all and in my opinion not the majority,
of religious people are vitalists in the sense that they believe
that, from the moment of conception, this is a full human person
or at least it deserves respect as a full human person. I do not.
I regard it as human life, it is manifestly human and it is manifestly
alive.
Q794 Mr McWalter: But you would accept
that stem cell research under the conditions laid down by Professor
Campbell perhaps although—
Professor Gill: And I would not
obviously be involved in the Stem Cell Steering Bank if I did
not accept that position but what I do believe is that it must
be for serious reasons, not for trivial reasons. There is constant
pressure to have it for trivial reasons but I think rightly there
should be constant public pressure and pressure from yourselves
to make sure that it is for serious reasons.
Q795 Mr McWalter: Professor Savulescu,
you talked about the primacy of these individual choices but we
do know that sometimes a series of utterly uncoordinated individual
choices can have clear long-term effects. For instance, the sale
of council housing to take one example. We knew that the best
stock would be stripped out very quickly and that the next generation
would be lumbered with two kids in a fourth floor flat because
the normal three-bedroom houses had all gone. We know that was
going to be a consequence of those decisions and, if you start
transposing that back to the genetic situation, you could easily
get a clear pattern emerging among all these individual decisions
which would then have very undesirable social consequences. Do
you write that into your ethical assessments of the primacy of
individual choice?
Professor Savulescu: Yes. Clearly,
if there is a significant social cost and it is highly predictable,
that is a reason to interfere. However, that argument is overused.
Q796 Mr McWalter: It is only one
per cent, so it does not apply.
Professor Savulescu: In principle,
yes, if there was a clear social consequence. To take an example:
sex selection. This is often used as an objection to sex selection
in Britain. If sex selection did deserve the sex ratio significantly
in Britain, that would be a reason to allow it. There is no evidence
that it would significantly disturb the sex ratio. In clinics
that have allowed it in the US and in Austria, people come forward
for the reason of family balancing—they have two children
of one sex and they want a child of the opposite sex. Indeed,
if you were concerned about the sex ratio, you would simply allow
sex selection only for family balancing and there would be no
effect on the sex ratio. So, I think this argument is right in
theory but overused in practice.
Q797 Geraldine Smith: How do you
think the State should provide an ethical framework for professionals
to work in assisted conception? Should this be separated from
licensing and inspection? What about the Bioethics Committee which
just looks at the ethical issues and replaces the ethical deliberating
functions of the HFEA?
Professor Campbell: For quite
a long time, I have felt that we are lacking a National Bioethics
Committee in the UK and we are beginning to think it more and
more unusual in this respect because there are more and more countries
that are actually setting up National Bioethics Committees. We
have the Nuffield Council which of course is a private organisation
and does good work and then we have these individual things that
are discussing particular parts, but we do not have a national
one. It would be clearly a forum for debate. This morning demonstrated
that we are not coming out with a single message but it would
be debating, looking for evidence and seeking consultancy and
so on. I think I would be very much in favour of such a committee
being set up. It would also take the heat off an authority like
the Human Fertilisation Embryology Authority which could then
become a symbol of licensing in more simple term, a licensing
authority of clinics and so on. In the absence of that being a
political reality or likelihood, then I think it is good to stay
with the kind of authority that will have a range of opinion of
the kind that we could debate.
Q798 Geraldine Smith: Do you think
at the moment the HFEA does have a wide range of opinion? Do you
not think really that you need some sort of Ethics Committee that
does have different points of view and different people, not just
scientists?
Professor Campbell: There are
non-scientists on the HFEA and places are advertised and there
is quite a good selection process, so it does have a range at
the moment. It could never do what a National Ethics Committee
could do—
Q799 Geraldine Smith: But there is
no one on there that would be against the principle of destructing
an embryo.
Professor Campbell: That is true.
If it going to be restricted by the legislation and in fact you
would not go on to the authority if you were opposed to some aspects
of the Act, would you? So, from that point of view, a national
committee would be rather different in the sense that it could
have a real range of opinion. I am a bit of a defender of the
HFEA and I say that in my evidence. I think that while no doubt
it will change, at the moment we need something like it in this
area.
Professor Savulescu: I think it
is a very good suggestion. For example, I think there is a broad
role for better education of professionals as well as the public
on these issues. For example, I have argued in the paper although
I believe the desires of people with disability to use technology
to deliberately choose to have a child with disability is wrong,
I believe that, if we are serious about respecting people's procreating
autonomy, we should respect those decisions. That is a very controversial
view and one which most of the medical profession does not accept,
but that is a view that I think should be put to the profession.
Whether they choose to accept it is another matter but I think
the ability to put these kinds of views is very important in a
liberal democracy and that we should have a much greater role
for professional debate around those issues.
Professor Gill: I think there
does need to be some kind of balancing. I think it is one of the
great virtues of the BMA Ethics Committee, in that it does have
a balancing between elected members and co-opted members. Inevitably,
organisations co-opt people who will be broadly sympathetic with
the organisation but electors sometimes put people on to committees
because they thoroughly disagree with the committee. I think that
balancing is quite healthy. Indeed, it is only in the context
like that that you do get minority views, for example the pro-life
position, being represented. I do not agree with it but I certainly
want it to be there and I think that ethics committees are impoverished
if they are not hearing that kind of view.
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