The
Chairman: With this it will be convenient to discuss
amendment No. 29, in schedule 3, page 60,
line 36,after storage, insert
, embryo
testing.
Mark
Simmonds: Under the 1990 Act, consent must, quite
correctly, specify the purposes for which any gametes or embryos are
used. The Bill enhances that provision so that in addition to being
able to consent to the use of embryos for treatment or research, a
person may also specify that an embryo can be used in the training of
embryologists. Again, that is quite correct and I welcome it. It is
right that those undergoing treatment are able to choose what, if
anything, extra embryos are used for. Some people who donate embryos
may prefer them to be used for the treatment of other infertile
couples, while others may not like the prospect of their embryos being
used by other people and would prefer them to be used for research or
training.
Training is
essential and vital, and these challenging procedures must be completed
accurately. Without scientists who are well trained in research and IVF
techniques, success rates for IVF will inevitably be lower and research
could become less
fruitful. The
amendment would put embryo testing, which is not in the Bill, on the
list of embryological techniques. It would be helpful if the Minister
clarified why embryo testing is omitted, although other categories are
included. This is particularly important in pre-implementation genetic
diagnosis, or PGD, which is set to increase as more illnesses and
diseases are found to have a gene marker. Skills and experiences of
embryo testing will become even more important. The amendment would put
that in the Bill, so that that people who may choose to use their extra
embryos and give consent would understand the full range of techniques
covered by the phrase embryological techniques.
Amendment No. 29 is a consequential
amendment.
Dr.
Harris: I am pleased to speak to the amendment, because it
relates to a provision that was not originally included, but which I
and many other people had felt for a long time should have been. The
history is that there was always a feeling that there was an omission
in the original legislation, because it did not provide for consent to
the use of embryos for training
purposes. It
was always difficult for clinics to know how new people could learn
embryological techniques, because although training is an integral part
of what any scientific laboratory or clinic does, it cannot always be
said to be a necessary part of treatment or an integral or necessary
part of research. There was always a fudge, and clinics and
laboratories were always concerned that they might be found to be
acting outside the law, and that it would be difficult to find enough
people trained in difficult techniques.
My noble
Friend Baroness Tonge proposed a form of words like that which has now
been adopted, but unfortunately a peer, or peers, intervened to assert
that it was not necessary, and some momentum developed around that
idea. The Minister, whom I thought was about to accept the amendment in
principle, said that she would reflect on it. However, everything was
put right on Report and the Government returned with the provision that
is now paragraph 4(2) of schedule 3.
Is the hon.
Member for Boston and Skegness making the case that some people who
give consent for embryos to be used might agree specifically to their
use in training people for general IVF work, but not for PGD, because
of the sensitivities about that? I think he is making that case, and
arguing that therefore the consent needs to specify it. I would be
interested to hear whether the Minister thinks that it is a matter for
primary legislation, because merely separating out embryo testing in
paragraph 4(2) does not provide that the consent form will be that
detailed. The
key question, regardless of the fate of the amendment, is what the
detail of the consent forms will be, and whether the Government intend
to tell the HFEA that its code of practice must make it clear that
consent forms must in turn make it clear, in terms, that PGD requires
specific
consent. I
do not see a problem with that, because I recognise that there may be
those who have concerns about training people to do something that they
think is unethical on personal grounds, even though they accept the
destruction of embryos. That would not be a problem, because I think
that the consent form is already relatively detailed. I would be
grateful if the Minister confirmed that the issue may well be dealt
with just in terms of how the consent is obtained, rather than by
making detailed specifications in primary legislation, although our
debate and the point that the hon. Member for Boston and Skegness is
making will certainly draw the attention of the HFEA to the
issue.
Dawn
Primarolo: Schedule 2 introduces the provisions that allow
embryos to be used for the purposes of training persons in
embryological techniques, including embryo biopsy and embryo storage.
There are consequential provisions in schedule 3, relating to consent
to the use of embryos for this purpose. We might, I think, come on to a
discussion of that, so perhaps it is sensible to answer one of the
questions that has been posed in that
context. A
provision to allow training is necessary because it is appropriate for
embryologists to practise certain techniques before carrying them out
in treatmentfor example, embryo biopsy, in which cells are
removed from the embryo to be tested for genes that result in serious
medical conditions. There is no specific provision to allow
embryologists to train in that technique. The Bill will rectify that to
allow training for embryo
biopsy. 9.45
am Following
discussion in another place, as the hon. Member for Oxford, West and
Abingdon said, the training provision was widened to include not only
embryo biopsy, but techniques involved in embryo storage, such as
vitrification and other embryological techniques. The Bill states that
training purposes can include
embryo biopsy,
embryo storage or other embryological
techniques. Amendments
Nos. 27 and 29 would amend the consent provisions in relation to
training of embryologists to list embryo testing specifically as one of
the purposes for which consent can be given in relation to embryos
being used in
training. The
embryological technique primarily associated with embryo testing is
embryo biopsy. The Bill already allows for other embryo testing
techniques, including some
that are not embryo biopsy. The amendments only effect would be
to specify other techniques associated with embryo testing in the list
of purposes before the catch-all purpose of other embryological
techniques. As
the two specific techniques listed are the only examples and there is
another catch-all purpose, which will allow other embryo testing
techniques, I do not feel that amendment would add anything to the
provisions. Perhaps the hon. Member for Boston and Skegness can tell us
exactly what is missing. The two specific techniques and the catch-all
purpose cover all the techniques that he wishes to identify, so I take
it that he has tabled the amendments to probe and to satisfy himself on
this important issue. I therefore hope that he will not press them to a
Division.
Dr.
Harris: If the hon. Member for Boston and Skegness does
not mind my intervening again, I interpret the point of his amendment
to be identifying whether people will have an opportunity to consent to
the specific purpose of training for PGD. He may be reassured by
schedule 3(2) of the 1990 Act, which says that a
consent may
specify conditions subject to which the embryo may be so
used. That
allows the HFEA, for example, to tell clinics in its guidance or code
of practice that patients should be given the opportunity to specify
conditions. I have not seen the consent form for that area and, as
training has been specifically identified, new consent forms will have
to be arranged, but the hon. Gentleman may wish to probe the Minister
further on her understanding of the
question. The
provision is may specify, not must,
which I think is appropriate, but I urge those considering such matters
to listen to the concerns raised by the hon. Gentleman, which I share.
There must be the ability for consents to be specific in this area,
even though only a very small proportion of people giving consent will
want to volunteer a specific exclusion. However, they must have that
right; it is only right and proper that they
do. I
hope that those remarks are helpful to the hon. Gentleman, and that the
Minister might consider coming back on the particular issue of the
consent form at a later
date.
Mark
Simmonds: I thank the hon. Gentleman for his contribution
on the amendments, which has been helpful and, as always,
detailed. The
purpose of tabling the amendments was to raise the importance of these
issues with the HFEA, particularly with regard to the point about the
specificity of consent, which the hon. Gentleman re-emphasised. The
Minister has, as always, been very clear, yet she seemed to be arguing
on the one hand that embryo testing is a separate area, while on the
other arguing that it is a subset of other areas in the
Bill. Clearly,
this is a probing amendment and the importance of the issue has been
put on the record by me and by the hon. Gentleman. The HFEA needs to
clarify the fact that it will be possible to be
specific.
Dawn
Primarolo: I am happy to correct a point that I made early
in my remarks: there are consequential provisions to schedule 3
relating to consent for the use
of embryos for this purpose. I need to expand on that: in relation to
the point raised by the hon. Gentleman, it means absolutely that the
person has to consent. That clearly raises issues around it being made
absolutely clear and consent being given for each process. When we get
on to other amendments, he will see how that is reinforced and
continues to be underlined. Written consent is
necessary.
Mark
Simmonds: I understand that. The Ministers
intervention has helped to clarify the fact that the consent form can
specify, in detail, subsets of consent that are not in the
Billif I have correctly understood what she said. Someone will
therefore be able to consent for their gametes or embryos to be used
just for embryo testing. If that is the case, I beg to ask leave to
withdraw the
amendment. Amendment,
by leave,
withdrawn.
Mark
Simmonds: I beg to move amendment No. 28, in
schedule 3, page 59, leave out lines 36 to
40. This
is a probing amendment. I fully support the consent that must be at the
heart of the Bill, and it is right that people should know and
understand what they are consenting to and the purposes for which their
gametes are used. We must ensure, however, that this necessary
cornerstone of the Bill is not over-bureaucratic, hindering potential
research. Not only may it be difficult to keep track of what each
individual has consented to, but there could be a problem if a cell
line has been developed from a persons gametes and is ready for
use in clinical trials but the donor has not consented to that
particular use. This could result in the work being wasted and having
to be
repeated. When
researchers start a project, they may specify the terms of reference to
which donors consent, but, as we all know, science and research
develop. Will consent have to be regained for research outside the
original terms of the consent, and will researchers have to go back to
the original donor for additional consent as science moves
on?
Dawn
Primarolo: The Bill requires consent from any person whose
cells or gametes are used to create a human admixed embryo. Consent is
also required for the subsequent use of any embryos
created. The
amendment would remove the provision that requires the consent to be
linked to a research project and that enables a person to specify
conditions subject to which their embryo can be used. The purpose of
that provision is to mirror the consent provisions for human embryos,
which enable a donor to place limits on how any embryo created using
their genetic material can be
used. The
provisions also allow a person to place conditions on the consent, such
as specifying that their cells may be used only for projects of a
specific naturefor example, research on motor neurone
disease. Accepting
the amendment would mean that each person could give only a general
written consent before the cells or gametes may be used for any
research project involving admixed embryos, without the individual
necessarily being fully informed. I say to the hon. Member for Boston
and Skegness that the intentionI
think it is his as wellis that admixed embryos should reflect
the same consent provisions as for human embryos and the use of genetic
material. It
is not the intention that we create a broad general consent, and it
should not be possible for that to happen. We are quite clear about
what we are doing. If the hon. Gentleman feels that we are being
unnecessarily restrictivewe do not think that we areI
am happy to hear further points on the matter. I would certainly want
to satisfy myself that there is a mirror here, and I would go away and
ensure in discussions with parliamentary counsel that that is clear. We
are not seeking to put different bureaucratic arrangements in place; we
are seeking to ensure that the procedures are the same as for embryos.
I hope that that clarifies the point for
him.
Dr.
Harris: I wanted to wait until the Minister explained the
point of this subsection before making a contribution. The treatment of
human admixed embryos seems to be different from that of general
embryos. In respect of the use of embryos generally, the illustrative
text
says: A
consent... must specify one... of the following
purposes... (c)
use for the purposes of any project of
research, and
may specify conditions subject to which the embryo may be so
used. In
the case of an admixed embryo, it states that the
consent must
specify use for the purposes of a
project not
any project of researchand then goes on to
say may
specify
conditions. There
is a difference, and if the Minister is saying that she will look to
see whether it is right that there is a reason for that, I welcome it.
I am not sure that I can see
that.
Dawn
Primarolo: Yes, that is precisely my point. We want the
same as we have elsewhere. We want a person to be able to give broad
consent if they choose, but if they want to specify a
conditionto go back to our previous debatethat should
also be open to
them. This
is a question of the drafting of the Bill, rather than of the
Governments intention. In my view, the Governments
intention is to continue to hold the position as we do for
embryosthat a person can give broad consent if they choose, or
specify conditions if they choose. That is what this measure is
supposed to
provide. I
understand absolutely the point that the hon. Member for Oxford, West
and Abingdon is rightly making, which is that we need to ensure that
a project has the same meaning, so that the wording
does not put in more. I have told the Committee that my officials are
having discussions with parliamentary counsel to ensure that that is
what the wording delivers. I assure hon. Members that that is the
intention, but if for some reason the wording does not do that, we will
need to come back to the Committee. However, that is the clear
intention and our
understanding. 10
am
|