Examination of Witnesses (Questions 180
- 195)
WEDNESDAY 23 JUNE 2004
MS ALISON
DAVIS, MR
PATRICK MAHON
AND DR
MAUREEN MCHUGH
Q180 Dr Harris: Can I take you to
a different scenario which is—and I know this is an assumption
but let's agree the assumption—that increased use of PGD
to screen for medical conditions that would otherwise be diagnosed
during pregnancy and lead to abortion, early or late but in pregnancy,
if that was increased and made more available and was shown to
reduce significantly the number of abortions in utero,
especially late abortions, would you consider that to be, albeit
not the ideal situation, at least better than the destruction
through termination of foetuses and unborn children, as you would
see it? So you take it at a very early stage pre-implantation?
Ms Davis: I think that both PGD
and abortion kill a living human individual. The age at which
they are killed is of no significance. If you killed a five-year-old
child or a 30-year-old person the fact that you had killed would
be significant and not the age of the individual killed. So I
see the moral argument as the same in both.
Q181 Dr Harris: That is a very clear
answer. I would like to take you to a different issue which is
the issue you raised, which we also heard about in the previous
session, in your submission where you say that eliminating disability
is laudable, eliminating disabled people is not. You call it the
ultimate eugenics. If we can leave aside—because I think
there are people who do not necessarily share your view on abortion
who are also concerned about this—your view on abortion,
would you argue that treating someone who is disabled so that
they are no longer disabled, in other words completely curing
serious disability through a technique (it does not matter what
it is, one that does not involve stem cells, for example) would
have a bad side because it is removing the disability completely,
and if we could do that for a huge range of people there would
be fewer disabled people walking around, the same people but who
had no disability, would you go as far as to say that that is
a bad thing?
Ms Davis: Obviously not. My primary
condition is spina bifida and now it is possible to largely prevent
it by the use of folic acid so that the individual conceived does
not have spina bifida. I think that is entirely laudable. We do
not want to make people disabled who need not be disabled. My
argument is that individuals who are disabled ought not to be
killed or in the case of embryos thrown away because they are
disabled. We have an inherent right to life.
Q182 Dr Harris: That was my next
question because I am trying to separate out your view that the
embryo is life from the separate argument which can be made by
people who do not share your view on the right to life of embryos
that preventing disabled people being born through—and folic
acid was the example I was going to give—supplementation
could be wrong in itself because it is, regardless of the embryo
issue, eliminating disabled people. Arguably, if we were able
to do that for all genetic conditions through nutritional supplementation
then that might be conceived in your terms as eugenics because
it is preventing the birth of disabled people because we are not
getting this diversity. Do you share that view separately from
your concern about the right to life of embryos?
Ms Davis: No, I do not. I think
that preventing disability from occurring is entirely laudable.
Preventing disability by killing individuals who have a disability
is to be condemned.
Q183 Dr Harris: Can I just deal with
one other issue in this respect which is that you have a view
clearly and it might be argued that you are entitled to maintain
that view in respect of your own reproductive choices and the
reproductive choices of those you influence and those who share
your view but is it right that we should have a society where,
even if your view were the majority view, that would, in effect,
impose disability by not allowing it to be avoided on people who
do not share your view about the equality of the right to life
of an early embryo compared to a late-term pregnancy, a foetus
in utero late term? Should you impose your views on others?
Ms Davis: I think there are two
questions there. I am not talking about imposing disability on
anyone. We are talking here about a disabled individual who is
already disabled and already alive. That is the base line. The
only question is whether we can, if they are an embryo, throw
them away or if they are an unborn child whether we can kill them.
I am not talking about imposing disability; I am talking about
an individual who is already disabled. So that is my first point.
The second point is that there are some things that are unequivocally
right or wrong. For instance, we have a law about murder. We do
not say that we are imposing our views on people if I do not think
murder is wrong therefore I can go and do somebody in. We have
absolute arguments and laws which prevent killing of human beings
who are born, at least in most cases. I think it is objectively
the case that human life begins at the moment of fertilisation.
If it did not, for instance, embryonic stem cells would be no
use to us if they were not human and live. So I think it is an
objective truth that human life begins at fertilisation and from
that moment on human beings are entitled to the protection of
the law and have the right not to be thrown away.
Q184 Dr Harris: Your answers are
very clear and consistent on the pro-life position and I have
not been able to get round that fundamental thing, which is fine.
If it could be done without destroying embryos, do you think it
is legitimate for a disabled couple, for example the case of the
deaf couple, to arrange things so that even though they had a
choice and it did not involve selection and killing embryos they
could specifically bring into the world a child that shared their
disability? Would you have any objection to that? If you do—and
I am working on the assumption that it did not involve killing
embryos in the process—what are those objections?
Ms Davis: The first thing is I
think it would involve destroying some embryos because if you
are selecting a particular sort of embryo then, by definition,
you are deselecting another sort embryo and they would be the
ones who do not have a gene for deafness or whatever.
Q185 Dr Harris: Let's say that they
were fertile and that it was 100% likely to transmit because they
were both carriers of the dominant disorder?
Ms Davis: So then you are asking
a different question.
Q186 Dr Harris: Yes I am.
Ms Davis: Should they be allowed
to have children? And, yes, they should be able to have children.
If you are talking about deliberately selecting an embryo that
has a gene for deafness then I suggest that it is wrong to design
a child to any specification, whether to be deaf or not to be
deaf.
Q187 Dr Harris: The example I am
using is if they needed donor insemination. That is the situation
I am talking about.
Ms Davis: You did not say that.
Q188 Dr Harris: I am sorry but that
is the situation I am envisaging. You do not have a problem with
that?
Ms Davis: I do have a problem
because I have a problem with designing children to a particular
specification.—
Q189 Dr Harris: By donor insemination.
Ms Davis: Sorry, I do not understand
what you are saying.
Dr Harris: We will leave it there. I
think you have answered the question.
Q190 Dr Iddon: Can I put at least
one question to our other two guests this morning. Thank you for
coming. Patrick Mahon first, in the submission on the consultation
you said that you were not comfortable with the idea of parents
cloning themselves with a view to having children. Would it be
acceptable, in your view, to clone a child that had, say, died
in child birth?
Mr Mahon: No, that is the classic
scenario, is it not, and it strikes me that that is exactly the
situation where you end up with massive ethical dilemmas where,
picking up on a point made in one of the earlier bits of this
session, leaving it to the parents does not seem to be a particularly
sensible way forward because the parents would only consider these
choices in a position where they are already in a very sensitive
and difficult state. Personally I normally think relatively rationally
and I suspect that I would not be thinking particularly rationally
at that point in time. The issue for me on all of these types
of discussions is for whose benefit is this being done? In the
case of the parents who want to clone their dead child, it is
pretty clearly more in their interests than any interests of the
child and therefore I do not think that is a particularly sensible
thing to do. If cloning were in any sense available to help the
child then I think there is an ethical issue there and one has
to decide what the relative costs and benefits are.
Q191 Dr Iddon: Do you think that
minimising disability in future generations is a goal that should
be pursued for the public good using these techniques we are talking
about?
Mr Mahon: I think I would agree
with Alison that the idea of removing disability in ways that
occurred before birth, making sure that people are not deliberately
born disabled or avoiding disability where possible is good, but
the other side of it, of discriminating against disabled people
once they exist is a difficult and probably wrong thing to do.
Q192 Dr Iddon: Thank you very much.
If I could turn to Maureen please. Maureen, if we could isolate
the gene that caused Parkinson's Disease do you think it is right
that people should be allowed to select embryos without that gene
so that we could eliminate Parkinson's?
Dr McHugh: Yes I do, but unfortunately
that is not case. Parkinson's disease has many causes. There are
many genetic and environmental factors so it is unlikely that
will ever happen.[2]
Q193 Paul Farrelly: Maureen, in your
submission to the consultation you said that the 1990 Act needed
reform with respect to PGD. How do you think it should change?
Dr McHugh: I am not sure really,
I am not an expert on these aspects. I think that it needs amendment
to define the purpose of the genetic testing. We need to define
who is going to benefit from the procedure, the unborn child or
the child that exists already.[3]
Q194 Dr Iddon: Perhaps I could also
ask Patrick, we had an informal session at which Baroness Warnock
was present and there is a feeling coming from people like Baroness
Warnock that the 1990 Act is okay, it is a perfect framework to
allow decisions to be made even about the new technologies. Would
you agree that the 1990 Act should be left as it is according
to Baroness Warnock's principle or do you think it should be changed?
Mr Mahon: I recently read the
HFEA submission to this inquiry and I think they were saying that
they felt it was worth having another consultation. I think I
would probably agree with that. The broad thrust of the 1990 Act
seems to still be reasonable but many people have suggested that
it does not take full account, unsurprisingly, of things that
were not around in 1990. At minimum I would suggest that it is
probably worth having a public consultation exercise to ask people
whether they think it needs amendment. If the views that come
forward do not appear particularly strong then leave it as it
is but it may well be that there is enough evidence to suggest
that it does need amendment.
Q195 Dr Iddon: Where do you think
are the biggest dangers that Parliament should really pay attention
to in the developing technologies?
Mr Mahon: I am not an expert on
this but the case last year that the HFEA ruled on (on which there
was a judicial review) of the parents wanting to have one child
to help another child with a rare genetic defect, that seems to
me to be a case where the legislation is somewhat grey and maybe
that needs more thought.
Dr McHugh: I was just going to
say I think the status of the embryo is one aspect that needs
redefining. We have technologies such as parthenogenesis and cell
nuclear replacement and we need to define embryos so that they
come under the protection of the HFE Act. Otherwise I think the
HFE Act provides a pretty sound basis and we should only to amend
it to take into account new technologies.[4]
Chairman: Thank you very much indeed
for coming along and giving us your views and advice and so on,
it is very helpful. If you have any other ideas or things you
would like to have said after the questions, please write to us.
You will maybe think of things, "I wish I had said that,"
as I am sure we all do. Please write in, you are very welcome.
2 Note by the witness: If it were possible
to deselect an embryo at the very early pre-implantation stage
to exclude the possibility of Parkinson's disease, then I think
it would be morally wrong to allow that embryo to develop further.
The same would apply to any serious disease or disorder that brought
real suffering. This is not discriminating against disabled people
and it is not murder. It is simply trying to prevent disability,
pain and misery. The stage of de-selection is crucial. The six-day-old
blastocyst is not an unborn child. It is a potential human being
and while it is given special consideration because of this, its
termination either passively via de-selection as in PGD or in
the process of extracting stem cells for research that might one
day benefit countless individuals is more than justified. Back
3
Note by the witness: I am thinking here of the Hashmi
and Whitaker cases recently in the news where the legal framework
did not provide adequate guidance or allow flexibility for sensitive
decision making. Wherever a selected embryo is allowed to implant
we have to ensure that the rights of the now developing individual
are taken into account and that embryos are not selected for dubious
or frivolous purposes. Back
4
Note by the witness: Parthenogenesis is the activation
of an unfertilised egg or oocyte via biochemical means so that
it develops as a fertilised egg would but with two sets of identical
chromosomes. Cell nuclear replacement also known as therapeutic
cloning involves the removal of the nucleus of an egg or oocyte
and its replacement with the nucleus of a mature cell or somatic
cell. The fertilised egg, once activated is or would be a clone
of the somatic cell donor. Back
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