Examination of Witnesses (Questions 600
- 610)
WEDNESDAY 8 SEPTEMBER 2004
MS LINDA
BALL, MR
JAYSON WHITAKER,
MR PETER
HINGSTON AND
MRS FIONA
HINGSTON
Q600 Mr McWalter: No, it is not quite
as science fiction as all that. Some of the things that are happening
now were science fiction only ten years ago, so I do not think
that we should just pooh-pooh this. We are concerned about whether
we need to have a body that regulates. If there is a strong feeling
of ethical repugnance about some of the things that some parents
might choose and that gets codified into law, we have a regulator.
We are trying to work out really whether and to what extent we
should have this regulator and you are people who, in a way, have
come up against the regulator in some way and it has created major
problems for you. You would like to see it less powerful or whatever.
We want to know whether it should be abolished completely and
you are of the view, as I understand it, that it should not be
abolished completely, it should continue to put obstacles in the
way of people who want certain things to happen but its terms
of reference should be changed. Would that be a fair description
of your position?
Mrs Hingston: Yes.
Mr Whitaker: Yes.
Q601 Dr Harris: Mr Whitaker, do you
know why the HFEA turned down your application?
Mr Whitaker: Because we did not
have a genetic order to screen out.
Q602 Dr Harris: What do you understand
was their reasoning behind saying that that was a good enough
reason?
Mr Whitaker: They had gone out
to an ethics committee and the consultation committee had come
back with 10 or 11 recommendations and they had taken virtually
all the recommendations except one that said this should also
be open to non-inherited disorders such as leukaemias and cancers.
It is quite interesting because, on the day we were turned down,
this document, which had the eleventh recommendation saying that
it should be allowed for non-inherited disorders, was on their
website and, on the day that we were turned down, this document
disappeared from their website. Charlie did not have something
that we could guarantee was inherited and it may be that his was
a sporadic case.
Q603 Dr Harris: Did you understand
why they made that distinction?
Mr Whitaker: Absolutely.
Q604 Dr Harris: What is your understanding
of why they made that distinction?
Mr Whitaker: The declaration was
that they were only allowing PGD with inherited disorders.
Q605 Dr Harris: Why do you think
that is? They must have a good reason for doing that. Is it because
they felt legally bound not to allow PGD when the embryo being
tested was not vulnerable or did they feel that it might be too
dangerous and that therefore the welfare of your future child
might not be adequately had regard to if they were being tested
for something that they did not have? Why?
Mr Whitaker: I believe that the
Fertilisation Act or law was passed and they were working within
what they deemed to be the framework and the boundaries of the
agreement. They also were saying that they had no evidence of
how the embryo or the child would be affected. When we were turned
down in 2002, they did not have enough evidence/cases in the UK.
The farce from my perspective is if you have some embryos and
one is selected and it is free from the disorder, with certain
cases that were also approved that year, if they were not an HLA
match as well, they were discarded anyway. So, fundamentally,
what was the difference?
Q606 Dr Harris: Had you not been
able to go abroad, then the treatment options for your son would
be limited and that could have resulted in his death.
Mr Whitaker: Yes.
Q607 Dr Harris: Do you feel that
you were given adequate hearing and adequate explanation by this
regulatory body that effectively might have condemned you to lose
your child?
Mr Whitaker: No, they did not
give us an adequate explanation. I understand, within the framework
they had available to them, why they turned us down. They turned
us down because they said that, within the legalities that they
had at the time, we were not screening out a known disorder, so
it did not fit. I do not agree with their choice and, had we not
had the potential to go abroad, we would have been appealing and
taking it as far as we needed to because I would not have sat
back and given up and accepted the fact that they were handing
my son a death sentence.
Q608 Chairman: In terms of people
who have the conditions or some of the conditions, what discussions
have you had with any of them when they have not had the chance
of having PGD? Have you any experience or thoughts about that?
I know that you have been concentrating on your own problems but
you must have bumped into people who have said, for example, "I
wish we had the opportunity to have PGD." Has that happened
at all?
Mr Whitaker: I am Chairman of
the UK Support Group for Diamond Blackfan anaemia and, each year,
we run a conference and we bring all the adults and children patients
together and I have not met anybody with Diamond Blackfan anaemia—adult,
child, teenager, baby—who either would not like to progress
that or had the option or who are not already doing so. The applications
that are going on at the moment are by personal friends of ours.
Q609 Chairman: Linda, have you had
any experience of that?
Ms Ball: I appreciate that this
is going back some time but, when my elder brother who had Duchenne
was diagnosed at the age of five, my mum was pregnant with me
at the time and obviously, in those days, there were no things
like this and she has said to me that it is something she would
have seriously thought about if it had been available to her while
just about to have my brother's diagnosis, but I have spoken to
quite a few other mums and one or two are actually thinking about
going down this road at the moment.
Q610 Chairman: Fiona and Peter, do
you have any comment on that?
Mr Hingston: We have talked to
other couples but a certain couple we know could not afford the
procedure and so decided not to go through with it.
Chairman: I am sorry it has been so short
but you have said a lot and it has been very, very helpful because
you have the experience and it is the first time we have talked
about this area here. Thank you very much for coming. You are
very welcome to stay and listen to the section that is coming
up now. Thank you very much indeed.
| 
