Examination of Witnesses (Questions 240
- 259)
WEDNESDAY 30 JUNE 2004
MR WALTER
MERRICKS, MS
MICHELLE SNEADE,
MR DAVID
GOLLANCZ AND
MS BECKY
GARDINER
Q240 Geraldine Smith: At the age
of 12, if you had known the identity of the donor and some details,
do you think that would have helped you?
Mr Gollancz: Enormously; yes.
It would have meant that the figure in my imagination which occupied
that space was a real person with a name and a history. Even if
I could not meet them, they would be a real person as opposed
to a ghostly insubstantial figure.
Ms Gardiner: I should like to
echo that. I was much older when I was told, I was in my mid-thirties,
only four or five years ago and at the moment of being told the
facts of my conception I was also told that the doctor to whom
my parents went had destroyed all her records on her death. It
was all in one sentence. What I felt as a result of that was a
huge sense of dislocation from the family which had brought me
up, coupled with an absolute void, just nothing; nothing. If there
had been something, it would have helped; bizarrely, it would
have helped to reconnect me to the family who brought me up. I
would just have helped me to find my way through it. It would
not have made it an easy thing, but it would have helped.
Q241 Chairman: Do you think the state
has an obligation to record the identity of donors.
Ms Gardiner: I think so; yes.
Mr Gollancz: Very strongly yes.
I would go so far as to say that keeping archives and histories
is the mark of a civilised society generally and to discard history
in that way is barbarous.
Mr Merricks: One of the points
we have made in our submission is that although the state has
its obligation under the Human Fertilisation and Embryology Act
to retain records of treatment after the Act came into force,
there are many records out there relating to children born before
1991 and there seems to be no obligation on anybody to do anything
with those records. At least they ought to be preserved and conserved
so that access to them may be possible for relevant reasons. We
know that the removal of anonymity is not going to be retrospective,
but nevertheless it seems to us extremely important that records
of the kind that Becky has just referred to are not destroyed.
There is nothing to prevent the destruction of those records at
the moment. I know of one doctor who was responsible for a number
of treatments and contact has been made with that doctor—he
is now in his late eighties—and there are some records in
his house and who knows whether or not he is going to destroy
those or his wife may do so.
Q242 Kate Hoey: Is the inevitable
consequence of your desire to have no anonymity, not going to
mean fewer people? Surely many of the people, particularly among
the student population, who used to donate regularly, almost as
a source of income, are going to stop.
Mr Merricks: We hope not. What
we hope is that a new type of donor will be recruited; that is
certainly what the Health Secretary, Melanie Johnson, has been
talking about: trying to create a new climate in which donors
are going to be valued, recognised for what they do, that donation
is going to be valued and seen in an open culture and context
in the same way that blood donation is.
Q243 Kate Hoey: It is a job for somebody
then: "I'll be a donor, it will be my job, it will be valued
and it will be paid at a certain rate".
Mr Merricks: It is not going to
be a fulltime job; it is going to be something which people do
as part of their contribution to the community. It is an enormously
valuable, charitable contribution. The most valuable contribution
that anybody can do is to contribute part of their genetic inheritance.
Q244 Kate Hoey: So none of you has
any concern that it will actually mean that there will be fewer
donors.
Mr Gollancz: If you mean concern,
it rather depends. For my part, it is important to say and I have
often said publicly that if there are fewer donors then so be
it; if there are fewer donors, then okay, that is the consequence,
tough.
Q245 Kate Hoey: You personally would
not mind if fewer families were able to be helped because of a
decision taken.
Mr Gollancz: Clearly one does
not want to be completely uncompassionate, one would feel for
them, but what I am saying, put very simply, is that if something
is wrong it does not become right because it is convenient. If
the consequence of doing the right thing is that life becomes
more difficult, well, tough.
Q246 Geraldine Smith: What about
the issue of not being retrospective? How do you feel about that,
that in the future some people will be able to find out their
backgrounds and other people will not?
Mr Gollancz: For my part I am
pragmatic about it. There is a strong ethical case for the loss
of anonymity being retrospective, that people never had a right
to be anonymous and they should not be protected, but to enforce
that would cause so much distress and resistance and turbulence
that it is in a sense not worth it. So I have never pressed for
it, even though in strictly ethical terms you can make quite a
good case.
Q247 Dr Harris: I suspect that my
colleague on my left will want to return to the issue of gametes
supply but what I want to question first is the issue of rights
and interests. You did accept in your earlier answer that there
was not a right to know, but there was a right not to have the
information withheld. Do any of you feel that there is a right
in the sense that we understand human rights these days to know
one's genetic origins?
Mr Gollancz: I think there probably
is such a right in ethical terms. I do not think it is practical
to frame it as a legal right. You can frame a legal right as it
might be incorporated in the charter in the terms I expounded
before, which is why I cast it in those terms. I do think that
is a manageable, practical thing. I am a lawyer, so I tend to
think of what we could actually make work. You could make work
a fundamental human right not to be deliberately deceived or deprived
of information. I do not think you could make work a right to
know; it is simply too private an issue to operate in that situation.
Q248 Dr Harris: Do you think there
is a balancing right of parents not to have to divulge who they
slept with when someone was conceived?
Mr Gollancz: I did say deprived
of information by public authorities. Again this is the legal
bit playing in. I am talking about human rights in the legal sense,
which are rights exercisable against the public authorities, not
against other individuals.
Q249 Dr Harris: That is why I was
asking whether you thought there was a principle here of a right
to know, because the principle of the right to know would not
depend on whether the person with the information was an official
or someone in the family if there were a right.
Mr Gollancz: There may be a whole
world of rights which could be, should be vindicated against other
individuals, one's parents, one's siblings, other individuals
in society, all sorts of people. I do not particularly think the
House of Commons is the place to debate those rights. They are
moral rights and they seem to me to belong to the sphere of private
ethics, religion, whatever. I have always concerned myself in
the context of this issue with rights which are capable of being
legislated.
Q250 Dr Harris: In your evidence
you suggest that people should not have the right to access treatment
if they do not commit in advance to divulging to their children
that they are donor conceived and that is therefore impinging
on the rights of other people in the family sphere.
Mr Gollancz: I do not want to
slither sideways out of that discussion, which I am happy to enter
into it. I think it is important for clarity's sake to say that
statement, as it is put there on the piece of paper in front of
you, is the Donor Conception Network's view and although I am
a good friend of the DCN, I am not a member and a range of views
may be represented here.
Mr Merricks: Our position would
be that there needs to be a switch in the assumption. Up until
now the assumption has been that people are entirely free to do
what they like. What we know is that people going through treatment
are often very isolated and one of the things the network seems
to do is to minimise that isolation. It is very difficult for
them to project forward to the time when the hoped-for children
are going to be in their teens, growing up, or indeed at the age
of Becky and David. People looking for a baby are suggestible
at that time when they are going through treatment; they are desperate
for a baby. What has happened up until now is that many clinicians
have encouraged people not to tell. They have simply said "No-one
need ever know, you could pretend this never happened, you could
just go back home and pretend this never happened. You don't need
to tell anybody". We do know how many people conceived this
way are going to feel distressed by not having been told. Our
view is that the position should be reversed so that the normal
assumption should be that people should be encouraged to tell.
Q251 Dr Harris: I understand what
you are saying, but you go further than that. You say "Our
view is that the welfare of donor conceived children" and
I should like to ask about the evidence for that "demands
that only those who are clearly committed to telling their children
should be [even] offered donor treatment". That is much stronger
than what you have just said. You went a bit far in that statement
of policy.
Mr Merricks: It is a position
which cannot be enforced. It is not the way you could ever enforce
anything. As David rightly said, it is not the sort of thing you
could put in legislation.
Q252 Dr Harris: You can get them
to sign a commitment.
Mr Merricks: You can, but—
Q253 Dr Harris: Is that what you
are envisaging?
Mr Merricks: No.
Q254 Dr Harris: Otherwise it is relatively
meaningless, is it not? Everyone will just say "Oh yes, of
course I'll tell them. Give me the sperm".
Mr Merricks: No, I do not think
that is meaningless at all.
Ms Sneade: I have two donor conceived
children. At the point of treatment all you are thinking about
is having a baby, you are not really thinking about bringing the
child up in the world at all. You just want to have a baby. I
now have six-year-old children. You do not think how it is going
to affect them through their lives at that point and it is very
important to be educated at that point as to how it will affect
them in their later life. It is not just about having a baby.
There should be a whole climate where you are not feeling that
you are doing a terrible, secretive thing. There should be no
issue about telling them, because it should just be a natural
thing.
Q255 Dr Harris: I am not disagreeing
with that; I am just disagreeing with the statement from the Donor
Conception Network.
Ms Sneade: I think the Donor Conception
Network's position is that there should be enough information
around and there should be a climate where people want to tell
their children.
Q256 Dr Harris: I understand that,
but that is different from what is said here. May I ask what evidence
there is in the scientific literature that there is harm to donor
conceived children from not being able to trace their genetic
parent, separately from the anecdotal cases of people who have
had it withheld from them that they were even donor conceived,
which I imagine might be damaging, although there is evidence
in Berlin today to suggest even that is not damaging, but let
us assume that is damaging? Is there any evidence, even a published
series of anecdotes, that people who are told they are donor conceived
at an early age are really troubled and damaged in significant
numbers by not being able to trace their genetic origin? Is there
evidence that is great enough to deal with the problem my colleague
raised, that if we solve that presumed problem it might mean that
there is less ability to be treated for infertility because of
a problem with donor supply?
Mr Gollancz: There are so many
assumptions and axioms underlying what you have just said that
we could probably spend the rest of the day unpicking it. I shall
try not to do that.
Q257 Dr Harris: Give me the scientific
reference.
Mr Gollancz: One of the points
is that at one point you talked about scientific evidence and
then you talked about a published series of anecdotes which sound
like two different kinds of sources.
Q258 Dr Harris: I should prefer the
scientific evidence as opposed to the anecdote.
Mr Gollancz: As to scientific
evidence, all sides of this argument are in a great difficulty
to produce anything remotely resembling scientific evidence for
a number of reasons. First of all, notoriously, you cannot re-run
a person's life under different conditions to make a control,
so you never really know how any individual story would have turned
out had things been different. All evidence around this has to
be a little contaminated by vagueness and sociological opinion-making
rather than true science. A further point of real difficulty is
that the samples and populations used in such studies as there
have been have been miniscule compared with the numbers of people
actually affected, because in fact so very few people are told
that they are donor conceived that you do not really have a large
enough population to work with to test anything very much. Anecdotally,
however, there is some evidence and I, for my own part, speaking
purely from personal knowledge now, have met 25 or 30 people,
ranging in age from their late teens to my own advanced years
who were donor conceived, usually, but not exclusively, under
conditions where parents were actually made to promise, in a mirror
image of what the DCN is proposing, that they would never tell
anybody, including the children, but who have then found out,
but have been unable to find out the identity of the donor. All
of them, absolutely all of them, say with a good deal of passion
that knowing you are donor conceived and not being able to find
out who the donor was is an extraordinarily painful thing.
Q259 Dr Harris: How do you separate
out the way they feel about having the fact that they were donor
conceived withheld from them, which you said applied to almost
all of them, from the smaller group of people who would know that
they were donor conceived in an ideal world, because parents would
be encouraged to tell them—I do not disagree with that—but
then could not trace their parents? Do you see the point I am
making?
Mr Gollancz: Yes, I do.
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