Examination of Witnesses (Questions 1233
- 1239)
WEDNESDAY 19 JANUARY 2005
MS SUZI
LEATHER, PROFESSOR
NEVA HAITES
AND PROFESSOR
EMILY JACKSON
Q1233 Chairman: Thank you very much
indeed for coming and helping us with this inquiry. You will have
been keeping in touch with it, I am sure, and you can see some
of the questions. We look on this as a crucial session, but we
are very curtailed by time because we have the Minister after
you. I hope that you will stay for that as well. If there is anything
that you would like to say that you do not get a chance to say,
please write in and tell us afterwards. We want to be short and
sharp with our questions and perhaps you can be the same with
your answers. If you can curtail it to one person, so much the
better, but just indicate if you want to add something. Suzi,
can I welcome you here and could you introduce your team?
Ms Leather: Thank you. May I say
a few words after that, referring to your last inquiry?
Q1234 Chairman: Certainly, yes.
Ms Leather: I am Suzi Leather
and I chair the HFEA. On my left is Professor Emily Jackson, Professor
of Medical Law at the University of London. On my right is Professor
Neva Haites, a consultant in clinical genetics at the University
of Aberdeen. Both are Authority members and, in a sense, they
reflect the breadth of the disciplines that we draw upon in our
work. Since I last met you, the HFEA has undergone considerable
change. Some of those changes have been in response to this Committee's
recommendations, namely that the Authority become better functioning
and engage better with the public. Chairman, you very helpfully,
and successfully if I may say, drew attention in your report in
2002 to our historic problems of underfunding, and you said that
we should become more proactive, dynamic and sensitive to the
demands of the public. In the last two and a half years we have
put a huge effort into doing precisely that, and into strengthening
regulation, becoming more transparent, and incorporating patient
views in our regulation. This improvement process continues, and
we have been following your inquiry very carefully.
Q1235 Chairman: Word for word, I
am sure!
Ms Leather: We are in the process,
for instance, of streamlining how we license PGD, to make it simpler
and to involve patients more directly. So I believe that patients
will feel more involved in our processes and they will have the
opportunity to give evidence to us face to face, if that is what
they want to do. We are also reducing the demands on information
from clinics, and we are moving to electronic data interchange.
I also envisage that we will be moving shortly to an in-house
professional inspectorate. So there has been much action; the
action continues. Much of that has been in response to what you
have demanded of us. We share your view that the legislation needs
to be changed, and we are doing our best to regulate within the
current framework at the moment.
Q1236 Chairman: You may not have
seen everything yet. "You ain't seen nothing yet", as
they say. That is why we are doing this report, and I think that
it is very welcome amongst many people that we are having an overall
look and an in-depth study. Thank you very much for that. Let
me say at the outset that I think, and I am sure that the Committee
does too, that IVF is pretty well established now as a procedure.
It has come a long way technically, and so on. It is almost part
of the British way of life now, in the health service. Do we need
so much regulation any more, or do you think there is far too
much?
Ms Leather: Although it is perfectly
true that IVF has continued now for 26 years, I think that all
medicine needs some regulation. The issue here is, is there a
need or a desire and a benefit from having a specialised regulator?
I think that there are some powerful arguments in favour of that,
the first being the unique status of the embryo, and also our
unique combination of purposes. We regulate research, we regulate
treatment, and we keep the register. However, it also has to be
recognised that, although this has been going on for some years,
where there are incidents—and we know about that, for instance,
through our alert system—those incidents are happening in
routine IVF, in routine laboratory procedures. So I do not think
that, simply because we have been doing it for a long time, we
should be complacent about it.
Q1237 Chairman: Various people have
been helping you and advising you on this inquiry. I do not want
to go into the details. I am sure you know what I would like to
ask you, but I will deliberately not ask you, and I will find
another place. However, one of the groups that have been helping
you says that you must have a coherent strategy and see it through
to a conclusion. What would that conclusion be from this inquiry's
point of view, in your opinion? What would you like to see on
the last page?
Ms Leather: Of . . . ?
Q1238 Chairman: Of our report.
Ms Leather: In terms of review
of the Act?
Q1239 Chairman: Yes. What kind of
strategy?
Ms Leather: The Authority thinks
that the current legislation has worked well in general and that
the broad principles of the legislation are the right ones. So
I do not think that we would question, for instance, most of the
absolute bans that are in place in the legislation. Perhaps I
could draw attention to our priorities for reviewing the legislation.
The first would be that I think a lot of the problems we have
had in the issue of pre-implantation genetic diagnosis, and particularly
in tissue-typing as well, stem from the fact that pre-implantation
genetic diagnosis, as a treatment, does not appear on the face
of the legislation. It would be enormously helpful if, in reviewing
the legislation, you could perhaps consider treating embryo selection
in the same way as Parliament, in the legislation in 1990, treated
embryo research: so setting out very specifically what are the
accepted purposes for doing embryo selection. That would be very
helpful indeed. I think that you will be aware that we feel very
strongly that the confidentiality requirements of the legislation
are too stringent and prevent us making best use of the useful
data that we have in our register. So I would certainly draw attention
to those two things. Third, it would be helpful—again, this
is about protecting patients and children—if we could have
a range of licences, including licences to do clinical research
and licences simply to store patient files. That would help both
in the training of practitioners such as embryologists, but would
also help in allowing us to be confident about new techniques
coming on: confident that they were being followed up properly
in clinical trials.
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