Examination of Witnesses (Questions 880
- 900)
WEDNESDAY 27 OCTOBER 2004
PROFESSOR KENYON
MASON, PROFESSOR
MARGARET BRAZIER,
MS SARAH
ELLISTON AND
MR JAMES
LAWFORD DAVIES
Q880 Dr Harris: Do you think it is
better that that child (the child who would be orphaned in five
years, say, in the example you gave) never existed, than took
their chances in the care system as an orphan at five? That is
effectively what you are saying when you deny reproductive opportunity
to that mother.
Professor Brazier: I entirely
disagree with my esteemed colleague Professor Harris and his analogy
of the "better never to have been born" and I think
I would agree with the views which are very much taken by Professor
Alastair Campbell that for several reasons, philosophical, theological
and plain common sense, it is an analogy that sounds very good
and, with the greatest of respect, means very little.
Q881 Paul Farrelly: I would like
to address very briefly another form of assistance, surrogacy.
Back in 1998 the Brazier Committee recommended a new surrogacy
act and a raft of other measures. Is anyone on the panel concerned
that we have not had a new act?
Professor Mason: I think it is
absurd, first, that the acts are different, and, secondly, that
surrogacy only indirectly comes under the control of the HFEA.
I think the trouble here is that we are forgetting—and it
is what we should really concentrate on—that we are treating
childlessness. By surrogacy we are treating childlessness due
to either the absence of the uterus or to the inability of the
woman to carry a child. This is a medical treatment and it should,
to my way of thinking, be certainly taken into the same act which
is to do with the medical treatment of childlessness. That is
my first point. The other point about surrogacy that worries me
is that of course there are two types of surrogacy: partial surrogacy,
where the surrogate mother provides the egg, and full surrogacy
where we impregnate her with an embryo. It seems to me absolutely
absurd that these two types of surrogacy should be treated differently.
Somehow or other we have to work it out. Either we should make
the particular situation where full surrogacy in actual fact is
given a dispensation under the act, or, alternatively, in order
to have some form of uniformity, we should unfortunately say that
you cannot have partial surrogacy, or you cannot get a parental
order, outside having had your child by way of a licensed clinic.
But it ought to be the same, it ought to be uniform, and, whichever
way you go, it has to be a matter for Parliament.
Q882 Paul Farrelly: Is that a consensus
view?
Ms Elliston: I certainly do not
agree with the latter point because the problem there would be
in terms of penalising the child and penalising the parents for
the way in which the child is brought into the world. I think
it would be deeply problematical to go down that particular route.
In terms of whether the law should intervene, I do have a slight
question about whether we are talking about all types of the alleviation
of childlessness. If we are going down that route, then presumably
we should be looking at hormone treatment for women who require
treatment to enable them to have children, and, similarly, we
should be regulating much more strictly the reversal of fallopian
tube surgery—because, again, that does exactly the same
thing: third party intervention to help people have children,
which they cannot already do. So I think it cannot just be that
we are talking about regulation in the field of the alleviation
of childlessness; there has to be a bit more to it than that.
Professor Brazier: I would certainly
like to see the question of the regulation of surrogacy looked
at again. The report that Alastair Campbell, Susan Golumbok and
I issued was in 1998, and a great deal has changed—particularly
Professor Golumbok's most recent research into children born as
a result of assisted reproduction, and some specific research
on surrogacy, on which, I regret, I am not fully up-to-date but
which I think is crucially important. I think it is very difficult
setting boundaries in surrogacy. Were one to regulate, as I think
one should, both gestational and partial surrogacy, one would
be regulating partial surrogacy when it is achieved by means of
donor insemination. Some of the evidence that came before us—we
were not in a position to conduct a full review—is that
there is still a small but to me quite surprising number of surrogacies
that are established by means of normal sexual intercourse, and
that, I presume, would fall rightly outwith the view of regulation
of both the HFEA and Parliament.
Q883 Paul Farrelly: In several US
states, surrogacy arrangements are enforceable by law, so the
child can be taken from the birth mother and given to the genetic
parents. Would you advocate that we follow that approach?
Professor Brazier: There were
powerful arguments put before the surrogacy review that one should
allow not just nominal payments but substantial payments for surrogacy
arrangements. If one simply looks at the minimum wage and considers
how long a pregnancy lasts, you would be looking to a sum that
ran to £20,000-£30,000. Should one accept the strongly
and persuasively put of view that surrogacy is just a form of
reproductive service, and if you put your uterus to the service
of another couple you should be paid just as much as we are all
paid for putting our brains to the service of our various masters,
then it follows—if you accept that thesis, which I do not—that
it is an ordinary sort of contract and an ordinary sort of contract
should be enforceable. I think one of the admirable parts of the
evidence put to the Surrogacy Review by COTS just that. They said:
"Surrogacy services are just another kind of labour; it is
just another kind of contract." If it is just another sort
of contract, then the contract should be enforceable as any other—not
necessarily by specific performance in terms of handing over the
baby, because that is a very rare means of enforcing a contract,
but by an action for damages. If you follow down that route—
Q884 Paul Farrelly: Professor Mason,
you are champing at the bit.
Professor Mason: This is another
bee in my bonnet, but I think that, as we have the situation now,
it is the worst of both worlds. We have a positive statement:
"No surrogacy arrangements are enforceable." That is
just an open invitation to people to break the contract. "What
is it there for?" I ask myself. It is such a negative thing
to say. I think we really want to be looking at certain things
which could not be included in the contract. If we looked at it
from that way, then I think it would be very much more appropriate
than this business where anybody can break the contract and say,
"Ah, the law says I can break my contract. Hooray."
That must be wrong.
Paul Farrelly: It is like gambling debts,
unenforceable.
Q885 Dr Harris: Could I ask Professor
Brazier why she thinks there has been no action on her report
by the Government.
Professor Brazier: It could be
that the Government carefully considered it and considered it
to be philosophically and conceptually wrong.
Q886 Dr Harris: Have they said that?
Professor Brazier: No, they have
said nothing. I think that there were other issues in this field
of bio-ethics that have had a much higher profile since 1998,
so it was demoted from premier league to division 3 (or whatever
it is called now).
Q887 Dr Harris: That is regrettable
in your view, obviously.
Professor Brazier: It is regrettable.
It would be equally regrettable, I think, now just to pick it
up six years later and say, "Let's do something about it,"
because everything has moved at such a pace.
Q888 Paul Farrelly: Are the current
definitions of gametes and embryos in the act adequate?
Ms Elliston: Given the challenges
there have been to them already, I think it is arguable that there
are so many different ways of creating something which can develop
into a human being that the definitions are not correct. I think
this brings us to one of the central problems, in that, if you
say the human embryo has a certain status so it deserves special
respect, then you have to decide why it is that it deserves that
respect. Is it because of what it is made up of? Is it its DNA
composition? Is it its potential to develop into a human being?
What do we mean by human being? Suppose it was possible to develop
an embryo that had one or two genes inserted from an animal—and,
of course, we are not allowed to create animal-human hybrids at
the moment, but suppose that was done—would we call that
a human being? What status do we give it? Why do we give it that
particular status? I think that is going to be very difficult
to determine, in terms of actually creating a new definition for
embryo.
Q889 Paul Farrelly: Should we base
definitions on the process by which the organisms are formed rather
than capability or potential?
Ms Elliston: Again, I think it
goes back to why we think that the embryo is deserving of special
respect. If it is because of its composition, then the technique
that is used to create it matters not one wit. If it is actually
where the genetic material has come from and that kind of issue,
then it might well be a relevant issue.
Professor Mason: I think Parliament
ought to have a look at the case decision that an organism produced
by cell nuclear replacement is an embryo. I have written on the
subject, and I personally think we have to make a distinction
here. In fact one of the troubles, one of the problems about IVF
in general, about the whole system really, is whether you are
looking at a human being or whether you are looking at a laboratory
artefact. Certainly, when it comes to cell nuclear replacement,
you are looking at a laboratory artefact. It is made in a laboratory;
it cannot be made anywhere else. It cannot be made naturally.
We have to think of some way else to look at it. An organism produced
by propagation must be different from an organism produced by
fertilisation.
Mr Lawford Davies: I think it
is worth reviewing the definitions as part of the wider consideration
of regulation in this area. If the HFEA is merged with the Human
Tissue Authority, as it will be, there will be a range of definitions
which will be quite crucial to phrase carefully in legislation
relating to human tissue, human material, embryos, gametes, and
the processes by which they are created, used and stored. I think
it would certainly be very useful to try to establish some clarity
about what each of those terms means and in relation to one another
as well.
Q890 Paul Farrelly: Clearly the subject
of stem cells is topical, not least because of the American election.
Is there a danger that definitions based on capabilities would
bring embryonic stem cell cultures within your regulation on the
basis that they have the capacity or potential to form an embryo?
Ms Elliston: It depends on exactly
how one defines that, because a stem cell in and of itself is
not going to be capable of developing into an embryo unless it
is put in certain conditions: it has to have the epigenetics,
it has to have the outside materials and the right environment
in which to develop further. So I think it is difficult to say
that stem cells as such would fall within the definition, but
it really depends on how one defines capabilities, whether it
is intrinsic capabilities or capabilities in a particular kind
of environment.
Q891 Paul Farrelly: James, you were
just referring to the potential benefits from merging legislation.
Would it be beneficial to have one act regulating all uses of
human tissue, be it stem cells or other parts of the body?
Mr Lawford Davies: I did not mean
to imply that I thought it was beneficial that they be merged.
I actually have the opposite view. I think it was a moment of
reckless abandonment to suggest that the HFEA and the Human Tissue
Authority should be joined together. I think they are fundamentally
different organisations. The point I really want to make is that
if they are to be joined, then in that legislation it would be
very useful to think very carefully about what the different definitions
meant. I do think, though, that it is important to have a more
holistic approach to regulation of the use of human material per
se. Whether that is done by the same body, and which of those
bodies is the competent authority under the directive, is another
matter. I think at the moment there is a danger in looking at
IVF as a very limited focused area of medicine and cutting it
off from other practice.
Q892 Dr Iddon: Does the fact that
the HFE Act applies to the whole of the United Kingdom but family
law is devolved cause lawyers any problems?
Mr Lawford Davies: Not in my experience.
Professor Brazier: Not as far
as I know.
Ms Elliston: Because of the way
the act is worded at the moment, it reserves matters of family
law where the child is actually born to the individual jurisdiction,
so that does not actually cause a problem. I think there is more
likely to be a problem with the Human Tissue Act and the proposed
revision of the HFEA, because human tissue, as such, falls within
the remit of the Scottish Parliament, whereas gametes, embryos
and such like fall within the remit of the Westminster Parliament,
and there is at least the potential for there to be some disagreement
if Scotland, which is not following most of the Human Tissue Bill's
provisions as it stands, chooses to legislate in a rather different
manner. Obviously there are certain things that would be common
to all jurisdictions because of the EU Cell and Tissue Directive,
but there are other matters of policy that might be regarded as
differently to be legislated between the two parliaments.
Professor Mason: It is just a
good argument for keeping the two authorities separate, is it
not?
Professor Brazier: I would entirely
concur. I think it would be disastrous to merge the two authorities.
Q893 Bob Spink: It I could turn to
donor anonymity. There are nearly 40,000 donor-conceived people
in the country at the moment. Do you think the removal of anonymity
for future donors would give grounds for existing donor-conceived
people to make a claim for financial support from their donor,
even though the Government intend that the genetic parent will
have no financial or legal responsibility for that child?
Professor Brazier: I think it
is highly unlikely that a retrospective claim for financial support
would succeed. I would be less certain, because it is not an area
in which I have worked recently, about whether a claim for access
to the identity of a donor, who would of course have been promised
confidentiality prior to 2004, would succeed. I think the Rose
case, of which James knows probably more, suggested there might
be a right to a certain degree of information but that the balance
of rights was would mean that if you had been promised anonymity
at the stage at which you donated it would be unlikely that a
court, even on a human rights application, would provide access
to the actual identity of your genetic father.
Q894 Bob Spink: The original adoption
legislation was not to be retrospective but then they re-legislated
on that. Do you think there is a chance, even though they are
promising it will not be retrospective, that they might go back
on that?
Professor Mason: Ms Elliston:
One would hope not, surely
Q895 Bob Spink: They have done it
before.
Professor Mason: They would have
no reason for doing it again.
Ms Elliston: If you did that,
it would be equally open to challenges of a breach of rights with
respect to private and family life on behalf of the donors who
had donated under the legislation as it then stood. If that were
to happen, I think that would be at least open to challenge on
that.
Q896 Bob Spink: Is there not a balance?
On the other hand, the child has a right to some sort of welfare.
The child did not ask to come into the world, and if the child's
welfare or identity is inhibited from not knowing that, from not
being able to trace that, is that not a major factor? Also, of
course, we have the UN convention on the rights of the child which
covers this.
Mr Lawford Davies: That is a very
different point to the issue of financial assistance. I am not
suggestion you were implying this but it would be wrong to suggest
that children born through donor conception are in any way suffering
as a result of that and that their welfare is affected adversely
through that. To the contrary, the evidence suggests that that
is certainly not the case. There are issues about what information
they give and whether they know that they are donor conceived.
The Rose case that Professor Brazier has mentioned certainly
did consider what identifying and non-identifying information
might be allowable, but those interests of the child would be
balanced against the interests of the donor. In that case, the
court did not have to do that balancing act, because it did not
go to that stage, but I am sure it would be balanced very carefully.
Q897 Geraldine Smith: How much flexibility
does the HFEA have in interpreting its remit? Do you perhaps think
it has gone too far at times? Do you think it has exceeded its
authority?
Professor Mason: That is: "How
long is a piece of string?" is it not? Every now and again
one feels, "Yes, it has," but presumably Parliament
can always come back if it thinks it has gone too far. That seems
to me to be the long-stop situation. Admittedly, it is reactive
rather than proactive, but, given the fact that if the HFEA did
make a decision which was clearly against parliamentary will,
they could always come back and say they did.
Q898 Geraldine Smith: Should there
perhaps be some sort of bio-ethics committee to take over some
of the ethical policy-making decisions?
Professor Mason: You are looking
at me and I thought I had already said that I am a maverick on
this.
Q899 Geraldine Smith: I would ask
all of you.
Ms Elliston: It partly depends
what the purpose of a bio-ethics committee actually is. If it
is to set policy, then that is one particular route that could
be gone down. If it is merely to act as an advisory body, that
is another one. Even if you are talking about issuing advice,
does it give advice on general policy areas or are you expecting
it to make decisions on a case-by-case basis? Suppose we had a
case like the Whittaker case, would a national bio-ethics
committee be the one which actually made the decision there or
would they have been asked to issue general guidance on policy?
I think there are very many different models of a bio-ethics committee
and a bio-ethics commission that we could actually follow and
each of them would have different implications.
Mr Lawford Davies: I think policy
is something that the HFEA does pretty well. I think it is the
implementation of that policy and the regulation of the clinics
that they do not do so well. Of course the HFEA as an authority
is quite free to ignore the recommendations of its ethics committee
and policy advisors, which it has done, certainly in relation
to saviour siblings.
Professor Brazier: I used to be
very much in favour of a national bio-ethics commission. I think
my doubts now are that I would want to see some substantial research
into how such committees and commissions operate in other jurisdictions
where they have been set up because I think there are a number
of holes in which they can fall. They can simply be talking shops;
they can be hugely expensive bureaucracies; or they can become
extremely politicised, not necessarily on party political lines
but on, if you like, pro-life/anti life, pro-medicine/anti-medicine
lines. I would think it is something the Government should continue
to consider, though I know Lord Warner's review ruled it out for
the moment, but they should do so, I think, on the basis of very
careful scrutiny of the kinds of models that have been operating
abroad and to see if such a comprehensive commission actually
does the job better than our rather more patchwork network does
here. The crucial relationship to my mind, which I am sure you
will be looking at, is the relationship between the HFEA and the
Human Genetics Commission. If one is thinking about a merger and
a rationalisation, they seem much more natural partners than the
Human Fertilisation and Embryology Authority and the proposed
Human Tissue Authority.
Q900 Dr Harris: When I was asking
about the welfare of the child, we did not have a chance to establish
the views of the other people on the panel. Professor Brazier
gave the view that she thought you could reword 13(5) in an inverse
way to require there to be specific evidence, presumably requiring
intervention or inquiry. I was conscious of the fact that James,
for example, may have had something he wanted to add to that general
discussion, or Sarah.
Ms Elliston: I am certainly more
attracted by the proposition that to say there has to be some
significant risk of harm demonstrated than the proof that the
welfare of the child requires treatment to be given. I think that
is a more attractive way of wording it, but I think it still comes
down to how that is going to be interpreted in practice. What
risks are we talking about? Again, I appreciate that not everybody
likes the comparison between non-existence and existence in terms
of the welfare of the child, but perhaps the idea of avoidable
and unavoidable defects which John Robertson uses is a more usable
type of analogy in this particular case. How does one decide,
even in this particular case, whether a significant risk is going
to be established. What risks are they? Do we have a list of disabilities,
for example, which one would say would put a child at significant
risk, in which case one would not provide treatment? Who decides
upon that? Even in those kind of terms the legislation does not
actually deal with the problem unless you are going to be very
prohibitive in the list, very strict in the list that you put
up, otherwise it is always going to be devolved down to some lower
level of decision-making body than Parliament.
Mr Lawford Davies: I think one
of the problems with section 13(5) as it is, is that it has borrowed
a family law concept of welfare, which is always applied to existing
children who can be assessed and visited and taken into care if
necessary and applied it to children who do not yet exist, so
you are asking doctors and scientists and nurses to assess what
might happen if a procedure which is very likely not to succeed
actually succeeds. It would certainly make it easier for doctors,
who are in a very undesirable position at the moment, having to
consider the parental ability of patients, if there was a very
clear requirement just to look around risk of serious harm—although,
personally, I do still have difficulty with even that because
it is so intangible and so difficult to predict what might happen
in relation to a child that does not exist.
Dr Turner: We have not only run out of
time but we have run out of a quorum, so we have to finish now
anyway. Thank you very much for your contributions to our inquiry
this morning. It is quite clear, inevitable, I suppose, having
lawyers in front of us, that you get a big hung up on definitions
from time to time, but that is the nature of the world. Thank
you very much for your contributions. They have been very helpful.
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