Examination of Witnesses (Questions 560
- 579)
WEDNESDAY 8 SEPTEMBER 2004
MS LINDA
BALL, MR
JAYSON WHITAKER,
MR PETER
HINGSTON AND
MRS FIONA
HINGSTON
Q560 Chairman: So, it was rather
haphazard in a way, just that somebody had the television on that
channel that night and not Eastenders and that is how they found
out. Did no one give you any leaflets because you must have met
many professionals in the service? Did no one advise you?
Mr Hingston: To be fair, after
we had had Jade, thinking about having another baby was not in
our minds to begin with, so we had just started to think about
trying for another baby and that is when our friend told us, otherwise
we would have started looking.
Q561 Chairman: Jayson and Linda,
how did you first hear about it?
Ms Ball: I had always known about
it ever since I was diagnosed as a carrier of Duchenne, but it
did not really come to prominence until after I had had my son
Daniel who has Duchenne muscular dystrophy.
Mr Whitaker: It was in 2001 when
I read in the papers about the Molly Nash case in the States and
I actually took the article in to see our consultant and said,
"What about this?" and she said, "That's science,
that is not going to happen here." That was back in 2001
and, at that time, I was told that it was not possible, practical
or even available.
Q562 Chairman: If you were running
the country—and, who knows, with things these days, you
might—how would you go about informing people about this
process and the availability of it? Is there a better way to do
it?
Mr Whitaker: It is going to affect
a very small part of the UK, is it not? There is no point in going
out with big publicity. I guess a television programme or something
would be a sensible idea, although I do not think that adverts
in the papers or doctors hearing about it would really get the
message out to the right people. Maybe transplant clinics and
specialist consultants would be a better way of having information.
Q563 Chairman: Do you think that
it is available to the extent that it should be in this country
from your experience now?
Mr Whitaker: No.
Q564 Chairman: Are you all saying
that?
Ms Ball: It seems to be very limited
and it also seems to be—
Q565 Chairman: Limited in what way?
Ms Ball: In that not many people
have heard of it and not many people are aware of the options
it offers families like us and, I do not know, it just seems to
me that some people know about it. I speak to a lot of other mums
who have Duchenne boys through various contacts that I have and
some mums do not seem to know anything about it, yet other mums
do and there is a mum who has been told, "No, no, you don't
want to go down that route." So, it just seems to be that
different areas of the country support it and other areas do not.
Q566 Chairman: Do you all feel that?
Mrs Hingston: I think it is the
cost as well. The cost does not help. Obviously it is a major
amount of money that you have to use, especially if it does not
work the first time and you go again and again and again. I think
that is a major factor in using PGD.
Mr Whitaker: I am a slightly different
case in that my son who is now coming up to six has Diamond Blackfan
anaemia. It is estimated that there are four or five genes that
cause that and only one of them has been identified. So, in our
application to the HFEA for PGD, we could not actually screen
out a genetic marker because our son is not affected by one of
the known ones. All we could do was apply for PGD but only for
an HLA match. There is a big campaign on this information and
people do not understand what you are applying for, people who
are trying to screen out a known disorder.
Q567 Chairman: Do you have anything
to say about the regulation of the service in this country? Do
you think it is over-regulated or under-regulated or do you feel
it is regulated at all? Could you see any signs of it?
Mr Whitaker: Personally, I feel
it is over-regulated.
Q568 Chairman: In what way?
Mr Whitaker: In that the regulatory
body, the HFEA, decided our case without coming to see us and
without talking to us. They would not speak directly to us, it
had to go through the clinic. Our clinic did a very good job of
putting the application in for us but we did ask them whether
we could bring our own specialist witnesses and whether we could
apply ourselves and speak to them in person and if they could
come and see our life for a day and then pass judgment, but instead
they just relied on their rules and regulations.
Q569 Chairman: Fiona and Peter, what
was your experience of the HFEA?
Mr Hingston: PGD was already in
place when we did hear about and applied for it. It was already
there; it was just a case of finding out a little more about it.
Q570 Chairman: And regulation? What
do you feel about that?
Mr Hingston: I think there has
to be regulation because where it starts and stops is the big
issue, really.
Q571 Chairman: Linda, do you have
experience?
Ms Ball: My experience is the
same as Peter and Fiona really, but I have not really come up
against regulations.
Q572 Mr Key: I wonder if you could
each tell us what you were told about the potential risks of PGD
to the embryo. Was this explained to you? Was this discussed with
you? Were you asked for a view?
Mrs Hingston: To be honest, I
cannot really remember. It has been a while since we went through
the treatment. My personal opinion is that it was just a cell
that was being taken from the embryo. No damage was being done.
Mr Hingston: I cannot remember
anyone saying there would be any bad effects.
Mr Whitaker: I was more or less
told that, by taking one or two cells out of the embryo, if there
was anything catastrophic done, the embryo would not continue
to thrive. So, if damage was done to its cells, then it would
not survive. However, by taking out one or two cells and doing
some tests, cells multiply at a normal rate and there would be
very, very relative low risk to the embryo.
Ms Ball: My understanding is that
there has not been enough PGD pressure to monitor and see what
the long-term effects potentially are. I think you have to weigh
that against what you are trying to screen out, anything that
might be a minor defect, which I was explained it would be, but
also that the child would then be monitored afterwards. So, you
have to look at it and you have to take what is potentially the
lesser or two evils: in my case, another little boy who is going
to die before he is 20 or a child who has a minor defect that
can be overcome.
Q573 Mr Key: Jayson, I was very interested
in your experience of the HFEA, that you had no contact with them,
that they would not talk to you and that you had to do it all
through the clinic. Would you have preferred it if you could have
talked to the HFEA direct?
Mr Whitaker: We actually requested
several times in telephone conversations to attend the hearing
and requested that, if we were not allowed to attend, we could
wait outside in case the panel had any questions they could not
answer from the pieces of paper in front them as we were happy
to stand in. The whole family and our Diamond Blackfan anaemia
consultant were happy to come and stand outside the HFEA all day
on the off-chance that they might ask for extra information. Instead,
they just carte blanche said, "No, it is not possible.
You are not invited. It is not public."
Q574 Mr Key: Peter and Fiona, what
was your experience with the HFEA in terms of approaching them
directly, having direct contact?
Mr Hingston: We did not.
Q575 Mr Key: Would you have liked
that? Would it have been helpful?
Mrs Hingston: We did not really
have that many problems with the procedure altogether; I do not
know that there was much need.
Ms Ball: I feel the same as Fiona
and Peter.
Q576 Dr Turner: You already have
children with genetic conditions that you do not wish to see replicated.
How do you feel that your decision to go through PGD affects your
evaluation of the life of the child you already have? How do you
feel it affects them?
Ms Ball: I do not. I value my
son's life entirely and, for me, I just would not want another
child with the same condition because I could not do that to the
child with the same condition watching his elder brother die,
which is what is going to happen. My son is the most important
thing in my life to me at the moment and another child would just
add to that happiness but I could not, in all fairness to my son
and in all fairness to a potential brother that he may have, let
that younger son see what is happening to his brother and I do
not think that mentally that would be particularly kind.
Q577 Dr Turner: How do you feel about
the ethical issues surrounding decisions involving PGD as compared,
for instance, with the decision that you might or might not make
for a termination having discovered a condition through amniocentesis
on an existing pregnancy? How do you think the ethical considerations
compare?
Mr Whitaker: That is an interesting
question because when we first suggested PGD to our consultant,
we were told, "You can't do that here but what you can do
is get pregnant, you can have amniocentesis, you can have a test
and then you can terminate." I am not anti-abortion, I am
not pro-life, people can do what they want to do, but the human
and emotional and ethical cost for my wife of being pregnant,
carrying a child and then terminating was the unethical question.
That was actually suggested to us as an alternative, a legal NHS
approved alternative that could be done here. That, to me, was
disgusting.
Mrs Hingston: I agree.
Q578 Dr Turner: Do Fiona or Peter
want to enlarge on that?
Mrs Hingston: I am not a knowledgeable
person but an embryo does not have a heartbeat whereas a foetus
does and the thought of actually terminating something that has
a heartbeat in my mind was not an option.
Q579 Dr Turner: You have obviously
been involved in screening for undesirable characteristics. How
would you feel about the possible wider implications in society
if PGD were extended to screening for desirable characteristics?
Mr Whitaker: Such as?
Dr Turner: Choice of sex.
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