Examination of Witnesses (Questions 60
- 79)
MONDAY 14 JUNE 2004
MR RICHARD
KENNEDY, PROFESSOR
NEIL MCCLURE,
DR SIMON
THORNTON, MRS
LIZ CORRIGAN
AND DR
SUE AVERY
Q60 Mr Key: One of the problems in
this whole area is, if you like, the post coding issue, local
variations. Would there not be a danger that if you moved down
to having local ethics committees at every health authority area
or primary care trust area that you would find there were different
standards being applied across the country?
Professor McClure: These standards
are now set nationally. Members of ethics committees are trained
nationally; it is a national framework. It is not like the old
days. Could I just illustrate the degree of regulation which there
is? A year ago, if I wanted to submit an ethics application to
set up a research project I filled out a six page form. I do not
fill out anything at all to do with research governance. Now I
fill out a 66 page form for ethics and on top of that I go through
a five month procedure which can often involve independent external
peer review, despite having been through grant procedures and
the ethics bodies before the project is given the okay by the
trust. There is a hugely different situation we are dealing with
here.
Q61 Mr Key: It sounds as if it is
not just money that is stifling research.
Professor McClure: No; paper.
Q62 Bob Spink: Do you think the HFEA
got it right in the Whittaker case in their regulation of PGD
where they refused permission for embryos to be tissue typed for
a non-hereditary genetic disorder—one that was sporadic—in
order to provide cells for potential treatment for the sibling
with a serious medical condition?
Ms Corrigan: This could be a personal
thing. I think that a child should be born as a right in itself
and not as a means to an end. That is my personal feeling.
Q63 Bob Spink: Therefore when parents
have children with a partner to get back at a previous partner,
should we regulate that? What I am trying to say is, are all children
not means to an end, the end being parental happiness or a legacy
or inheritance or continuing the family line?
Ms Corrigan: It is a personal
thing and I think in a situation like that you can only look at
it from your own perspective because there are many different
reasons for having children. If, for instance, you are born into
the Church of England you believe that you get married, you have
children and that is the way the line continues. It is not a means
to an end; that is why you get married. For people who do not
chose to get married that is another issue and that is their own
personal belief.
Q64 Bob Spink: Does the BFS have
a line on PGD?
Mr Kennedy: PGD in general or
the Whittaker case specifically?
Q65 Bob Spink: Particularly in the
so-called "save your sibling" cases.
Mr Kennedy: Broadly speaking we
supported the HFEA line on that particular case, the Whittaker
case, on the basis that the welfare of the child was compromised
by the creation of a child specifically to act as a donor.
Q66 Bob Spink: What about the welfare
of the existing sibling? Did you support the HFEA in the Hashmi
case?
Mr Kennedy: We did.
Q67 Bob Spink: So you have one child
with a hereditary disease with a severe life expectancy problem
and potential treatment and their parents are entitled to seek
to save that child through PGD, testing embryos and implanting,
in inverted commas, a right embryo with the right tissue type.
You then have another child with a very similar condition but
is only sporadic and therefore not a predictably hereditary condition
that is denied that potential treatment solely on the basis of
that differentiation. Are you happy that that is fair on the child
that is condemned to lack of potential treatment for a life threatening
disorder?
Mr Kennedy: On the one hand the
unborn child was at serious potential risk of developing the condition
itself and therefore the process was in the interests of that
unborn child to produce a child that did not have that condition,
as opposed to the other circumstance in which that was not the
case.
Bob Spink: In their evidence the BMA
suggest that it is not really in the interests of the child with
the genetic defect in the Hashmi case to have PGD because if it
had the condition it would be destroyed; it can never really be
in the interests of an entity to be destroyed rather than to have
its chance.
Q68 Chairman: That is the BMA decision.
What do you think about that?
Mr Kennedy: In termination of
pregnancy we do pre-natal diagnosis on a regular basis.
Q69 Bob Spink: That is not for the
benefit of the foetus, is it, that they are aborted?
Mr Kennedy: No, of course not.
Presumably it was a societal judgment that committed the Abortion
Act for certain circumstances and they came to the conclusion
that if a child was potentially at risk of some serious debilitating
illness it was in the welfare of that child that was being protected
in allowing the consideration of termination of pregnancy. I think
these are very personal matters and you are asking us to give
our personal opinions.
Q70 Bob Spink: I asked for the BFS
view; I was very careful in what I said. We will come on to more
detail on the welfare of the child I expect, but do you think
that the welfare of the child might arguably be writ more widely
so that a sibling does not have to die to protect the potential
welfare of a child from a procedure where, if it is positive,
that embryo will be destroyed anyway; because there is more than
one child, is what I am trying to say.
Mr Kennedy: Sorry, I am not with
you.
Q71 Bob Spink: Your argument is specific
on the welfare of the embryo that is going to have the PGD performed
on it and then if it is clear potentially be used for a procedure
which may have some risk associated. However, there is more than
one child whose welfare might be considered. Do you think that
the HFEA's decision either on its legal advice because it felt
constrained to consider just the welfare of the child that might
be born as a product of the embryo—as a consequence of the
embryo that was tested—might have looked wider at the welfare
of both children, that is the affected sibling with the serious
disease as well. If so, would it come to a different conclusion?
Mr Kennedy: I suspect the HFEA
was constrained by the limitations of the Act in that it was there
only to look at the welfare of the embryo and the child that might
result from the treatment and not the other child that was already
alive and had the condition.
Dr Avery: The decision was legally
constrained and in fact if you look at the code of practice the
obligation to consider the welfare of the child does extend to
existing children as well as potential children. The decision
in the Whittaker case was made based on legal constraint rather
than on looking at the issues of the welfare of the child.
Q72 Bob Spink: Part of the point
of our inquiry is to look at where the law might be changed. Do
you think on the basis of what I have put to you there is an argument—and
is it a good argument—for widening the consideration of
the welfare of the child to include all the children affected
and their welfare?
Dr Avery: It was not done on any
aspect of welfare of the child; it was a legal interpretation
of the limitations of the authorities' powers in making that type
of decision. It is the application of PGD basically and where
you can apply this kind of technology and the degree to which
you can select embryos in the course of treatment; it was not
done on welfare of the child consideration. If that had been the
only consideration then clearly if you follow the code you would
take into account the welfare of the other existing children as
part of the process. It was not a welfare of the child decision.[1]
Q73 Bob Spink: We clearly have two
different opinions. I am advised that the legal limitation was
under section 13-5, the welfare of the Whittaker embryo specifically
but that may be another way of putting what you have said. Let
us move on. I want to ask you about the definition of serious
diseases. Are you happy that there is a line drawn—it is
a pretty vague line—at the use of PGD to prevent serious
disease and who makes that decision about what is serious?
Dr Thornton: I think that those
of us working in the field feel comfortable with the idea of PGD
being restricted for serious diseases. The difficulty inevitably
is deciding individual cases and there needs to be a degree of
flexibility rather than a listing of those conditions. I ought
to say that I am slightly cautious about entering into a lot of
discussion about this because our clinic has actually been looking
after some of the cases that are being referred to.
Q74 Bob Spink: We will talk then
in general terms. In general terms can you think of a condition
that would lie outside serious disease but is considered to be
a condition for which treatment is available under the NHS?
Mr Kennedy: Breast cancer.
Q75 Bob Spink: If someone was certain
to develop breast cancer at an early stage that would not be considered
to be a serious enough condition to merit the use of PGD in your
opinion (I know it is just one opinion). Is that what you are
saying?
Mr Kennedy: Yes.
Q76 Bob Spink: Do other people agree
that is a reasonable outlying case?
Dr Thornton: Genetics is not really
like that though. There are certain serious medical conditions
that do have an inevitability about it like the thalessaemias
where there is some inevitability about what is likely to happen
in terms of the outcome; the kind of situation that Richard is
dealing with is the more difficult ones where there is a pre-disposition
towards and an increased likelihood of, but not an inevitability
of.
Q77 Bob Spink: However, there can
be a strong likelihood with a family history and BRCA1.
Dr Thornton: Yes.
Q78 Bob Spink: If memory serves me
right, then that would arguably be more likely to get breast cancer
or be at serious risk. Parents might say why should they have
a child which goes through what they went through—if this
is a surviving parent or a parent still at risk of recurrence—so
how do we home in on what is a serious disease? I happen to disagree
with you and that is fine, but who is going to decide what is
a serious disease?
Mr Kennedy: The very fact that
you do disagree, the very fact that if we went round this room
we would get 10 differing opinions illustrates the point that
there is not an answer to the question. There has to be some mechanism
by which these issues can be discussed and policy can be considered.
Q79 Bob Spink: Surely when we voted
for this, society would have expected parliamentarians, when they
put this provision in in that amendment, to know the sort of things
that would be included or not.
Mr Kennedy: Unfortunately you
cannot second guess what is going to happen in 10 years' time.
I think we have already alluded to the fact that there needs to
be some flexibility in any revision of the legislation to allow
at least for the possibility of different techniques and processes
to be considered.
1 Note by the witness: The HFEA response to
the license applicant in the Whitaker HLA case was based on Schedule
2 Paragraph 1, the basis on which PGD is licensed. The embryo
would not be at risk from the condition and therefore this paragraph
did not apply. Back
| 
