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Richard
Nicholson
Editor, Bulletin of Medical Ethics
Thank you to PET and
to Suzi for saying virtually everything I wanted to say, but not
actually reaching the final conclusion, which is: 'Hang on, we
really ought to call a halt to a lot of what is going on here'.
I am concerned about a number of different issues in this field,
and first of all, with the way in which there is an increasing
use of the human body as an object or as a commodity. We started
off with transplants: initially one just used organs from dead
people and somehow that seemed all right. But then it became obvious
that a lot of transplants might do better if we took organs from
living people, and sometimes even from people who are not able
to consent for themselves.
We've moved on from
there, and now we have the notion of saviour siblings. But there
is a real problem. We are not treating this saviour sibling as
a human being of equal worth to other humans. We are not creating
this saviour sibling to be a child in its own right. We have created
it - designed it - to be a source of spare parts for an existing
child. If you start designing other human beings, you are putting
them on a lower level than yourself. You are saying that it is
perfectly all right for me as an existing human being to design
and choose what sort of human beings we are going to create. This
really is genuinely playing God. I believe that all human beings
ought to have equal rights and equal status. Suzi has already
mentioned the problem with treating human beings as a means to
somebody else's advantage, rather than treating them purely as
ends in themselves.
There is a real difficulty
here. What is the difference, ultimately, between using human
beings in that way and using other human beings for slavery? Where
do we draw a moral distinction between slavery, which still goes
on in many countries, and creating what I would prefer to call
slave siblings, not saviour siblings?
I appreciate that the
HFEA, when it first had to consider this, had an enormous problem
because it is not created to deal properly with ethics issues.
It has hardly ever had any moral specialists amongst its membership.
The HFEA Ethics Committee, when first asked to look at this, said
that they saw no difference between PGD in order to avoid the
birth of a child with a gross genetic disorder and PGD plus HLA-typing
to ensure that the new embryo would be compatible with an existing
sibling. Now, to see no difference between those two is extraordinary,
but this is what the Ethics Committee said. As soon as this was
pointed out, I noted that their report was removed from the HFEA
website. Presumably, other people noticed that this was a bit
of a nonsense. You cannot have a regulatory body which does its
work as a regulator properly, but which is also capable of dealing
with the depth and complexity of the ethical issues.
There is also a problem
with the restrictions that the HFEA wishes to put on the use of
such saviour siblings - or slave siblings - at present. Once the
child is created, the HFEA has no control. It may say that the
embryo can only be used - once developed - to provide cord blood
for a sibling. But, when the cord blood transplant fails, it can't
stop people from going on to take bone marrow from that child
and doing bone marrow transplants to try to resolve the genetic
problem. And, indeed, I wonder, after reading Lord Phillips' judgement
in the Hashmi case, whether the HFEA will at all be able to use
the controls that it has currently put in place. Basically what
Lord Phillips said was that if a woman would not have a baby unless
it has been designed to be suitable in some way for her needs,
then designing the baby in that way is assisting her to have a
baby and must be permitted. Now, there is no restriction on that.
There is absolutely no reason why a woman cannot, using that logic,
say 'I want a baby with blue eyes and blond hair that looks thoroughly
Aryan' and not have a baby until an embryo has been produced with
those characteristics. The judgement and the way it was argued
to permit the Hashmis to proceed leaves very little scope for
the HFEA to put on any sort of restriction. And I suspect that
any restrictions that the HFEA does apply will be open to legal
challenge on the basis on Lord Phillips' judgement.
Another thing the HFEA
does is to impose a duty to consider the welfare of any future
child. I wonder how it assessed how a child is going to cope with
the knowledge that it was born for the benefit of its older sibling
- not because the parents actually wanted another child, but just
to make sure that their existing child would survive. Why should
we assume that the child is going to be delighted to have been
able to be of altruistic use to its older sibling - particularly
if the child is to undergo a bone marrow transplant, which becomes
an increasing probability. It seems to me that we are simply not
entitled to assume that.
Another argument is
that people have children for bad reasons, so why should we try
to prevent them from having children that have been designed in
this way? The simple answer is that two wrongs don't make a right.
That sort of argument is what helps us to have the constant slippage
down the slippery slope to greater and greater commodification
of the human body. We hear no criticism of the parents themselves,
but what about the Hashmi couple? One of them knew that they were
a carrier of thalassaemia. What happened to the prenatal diagnosis
that is so common in communities where thalassaemia occurs? How
was it that they had a child with beta thalassaemia major? I think
one has to look carefully at the ways in which parents behave.
Parents often say that they would do anything to save a child.
Do we actually want to permit that? Do we really want to live
in a world where people will do anything? I am reminded of the
story of Solomon and the two harlots. One of them had slept on
her baby and killed it, and then stole the other's baby. So there
was a great fight between the two of them as to whose this baby
was. And Solomon said 'Bring me a sword' and he was going to cut
the baby in half, knowing full well that the one who really loved
the baby was the one who was prepared to give it up, to save its
life. I think we have to be very careful about the way in which
we deal with the emotional issues.
Part of the problem
with looking at the ethical issues, I suspect, is that there are
certain taboos which perhaps we could call an ethical gut feeling.
I know there are some in the audience who will be much more precise
about it than I am. But the problem is that so often we say that
those taboos or gut feelings are worthless, unless we can produce
a completely rational reason why we should support them. I'm not
sure that that's always right. That way we go constantly down
the slippery slope, permitting more and more which, a few years
ago, might have been held to be quite unethical.
One major concern is
that almost every human being feels the importance of justice
- the importance that human beings should be treated fairly and
equitably. It is in a sense one of the most fundamental rights.
And the problem we have with assisted procreation is that that
right to justice doesn't just end at the borders of our own country.
It is a right which applies throughout the world. Assisted procreation
is part of a modern medical process which is designed just to
meet the desires of rich western people, regardless of the effect
it might have around the world as a whole. We have to be aware
of that. You cannot run modern medical systems without having
the sort of economic system which ensures that many people are
kept too poor to be able to provide themselves with any health
care at all. Is it right, in a world which is already overpopulated
- and getting more overpopulated, that we should have the whole
rigmarole of assisted procreation going on? I know it makes a
lot of people very rich in this country (and a lot of patients
very poor), but is that a good enough reason for it to continue?
I think we have to recognise that the sort of money spent on creating
one baby by assisted procreation is the sort of money that would
save many thousands of babies already alive in third world countries,
if it were used for the simple preventative healthcare that we
take for granted, but which we prevent those countries from applying
because we keep those countries poor.
There are reasons,
both from the way in which we regard ourselves as human beings
and whether we are just commodities, and there are reasons for
justice's sake, why we should not permit the creation of what
I call slave siblings.
Copyright Progress Educational Trust
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