The
Minister of State, Department of Health (Dawn Primarolo):
I will try to deal with the questions asked during our debate on
consent. I start by responding to the general points made by my right
hon. Friend the Member for Coatbridge, Chryston and Bellshill and my
hon. Friend the Member for Bolton, South-East about the appointment of
a representative when a carer is not available. I remind them that the
1990 Act has requirements on effective consent and what that
constitutes. Effective consent is required on the use of embryos, and
the Bill seeks to put in place the same. That will cover what the
embryo can be used for, the maximum periods of storage for gametes or
embryos, what should be done with the embryo or gamete after death, and
any other conditions that are wished to be placed on embryo use. That
picks up the point that my right hon. Friend the Member for Coatbridge,
Chryston and Bellshill made about consent. While there can be general
consent—we can agree to the use of our embryos or gametes for
all research—we can also specify, if we choose.
To take my
right hon. Friend’s example, he might agree to research on
particular areas that might be connected with a condition he does not
have, but go on to say that he wishes to withhold consent for other
areas of research. That can be done, and it is done under the aegis of
effective consent in the 1990 Act. With regard to the operation of that
consent, the Bill seeks to make sure that for human gametes used to
create a human admixed embryo, the use of the embryo and its storage
are brought into the same regulations and given the same
protection.
The Government
amendments deal with the exceptions we are discussing with regard to
how consent works and being able to specify the consent, which has to
be given. That includes, for instance, counselling and discussions. In
this hierarchy, in the particular circumstances mentioned by my right
hon. Friend the Member for Coatbridge, Chryston and Bellshill and my
hon. Friend the Member for Bolton, South-East—in circumstances
in which an individual is incapable of giving consent—the carer
is the correct person to go to. The question is if there is not a
carer, what happens?
The process
in that case follows the provisions of the Mental Capacity Act 2005.
This picks up the point made by my right hon. Friend the Member for
Coatbridge, Chryston and Bellshill about what he described as an
advocate, which may be somebody who is charged with a responsibility
under that Act. He also made the specific point that the views
expressed have to be those of the individual who they are representing.
Clearly, those provisions need to be spelled out in discussion about
the safeguards and how they operate between the relevant
authorities—in this case the Ministry of Justice and the
HFEA—to make sure that is absolutely the case. There is an
absolute protection there.
That also
covers the point that my hon. Friend the Member for Bolton, South-East
made with regard to remunerations. A carer could be in receipt of a
payment such as independent living allowance, but that must not
interfere with the rights and protections clearly conveyed in the 2005
Act. That is where we are locating ourselves to ensure that we follow
through with the same rights that the House has already identified as
being necessary in cases where the individual does not have the
capacity to provide consent. I hope that that clarifies those
points. Moving
on to the points made by the hon. Member for Boston and Skegness about
how Scottish law differs—which, as this is a devolved matter, it
does quite a lot—I do not feel sufficiently competent to give
him a specific answer. I wonder whether he will allow me to get the
Scottish Law Officers to give us a proper answer as to how the laws
interact, particularly, as he mentioned, around the age of
18.
Mark
Simmonds: Of course, I will be more than content with the
Minister’s promise to get more detailed advice. However, my
understanding of the Bill is that there are parts of it that cover
Scotland, so the power is not devolved. It is relevant for the
Committee to understand why there are differences between Scotland and
England.
Dawn
Primarolo: I absolutely agree with the hon. Gentleman. May
I refer to my experience as a Treasury Minister? The Finance Bill makes
legislation for the whole UK, but, nevertheless, at times it has to
interact with Scottish law as it has evolved. This is such a case. I
will be happy to get that information for the hon. Gentleman so that he
is satisfied that there are not any difficulties
here. The
hon. Gentleman asked questions about consent, the child, and the
interaction of parents. I think he is looking for where the crossover
is between the parents and the child’s point of competence. The
consent would endure unless it were withdrawn or varied by the
parents—I shall come on to the point about what happens when
both parents do not agree—or when the child became competent to
consent themselves. I do not know whether
the hon. Gentleman wanted to know whether it was set for all time or
could not be varied, but it can be, under the restrictions that are set
out by the Bill. Parents can
withdraw consent, or vary it, but that would be subject to the limits
that apply to all effective consents under paragraph (4), given how far
the research might have progressed. That is one of the issues, because
there might have been a great deal of work and expenditure. We must not
talk about destroying all that, and that is a general caveat—can
one talk about a general caveat?—and, more, a general
requirement within the
provisions. If
there were a dispute between the parents, they might have to go to the
courts to resolve the matter because that does not fall under the Bill.
Parents’ responsibilities and their joint responsibilities are a
difficult area, and it would be difficult to legislate on a dispute in
a partnership where further use may be disputed. I am afraid that there
is no other way, in such limited and regrettable circumstances, that
such a matter can be
resolved.
Mark
Simmonds: I am grateful for the clarity that the Minister
is putting on this area. Does that mean that the consent of one parent
is sufficient in this particular
case?
Dawn
Primarolo: I think that the consent of one parent without
the other parent dissenting would be considered to be the consent of
the parents, so yes, technically, one parent could be deemed to be
speaking on behalf of both. The obligation would be to ensure that the
other parent would have to say to the contrary. I think that that is
how the law would operate under such
circumstances. The
hon. Gentleman asked about whether the provision limits research to the
original debilitating disease, or whether it could be extended to
linked disorders. If the research into the condition was linked to the
original condition, it would be permitted. Research could be into the
condition suffered or a similar one. Clearly, any provision in that
area must be about either a disease or disability that the child has,
or its treatment and
care. 1.45
pm The
hon. Gentleman raised the point about someone who might be unable to
find a carer and what the appointment of the other person means. I have
answered, clearly I hope, that that falls within the confines of the
Mental Capacity Act 2005 and the guidelines there. The same answer goes
to my right hon. Friend the Member for Coatbridge, Chryston and
Bellshill and my hon. Friend the Member for Bolton, South-East. I have
answered the Scotland
point. A
point was raised about whether a researcher can nominate another
researcher—my right hon. Friend the Member for Coatbridge,
Chryston and Bellshill touched on that. The answer is no, as it will be
governed. It will have to be an appropriate person as set out in the
Mental Capacity Act, acting and speaking on behalf of the
patient—the individual considered not to have capacity, as my
right hon. Friend said. This is a delicate area and it is clearly dealt
with in that
Act. I
think that I have dealt with the issues raised by the hon. Member for
Boston and Skegness, so I will attempt to answer the questions asked by
the hon. Member for
Oxford, West and Abingdon. If I do not deal with them all, it is because
I did not necessarily understand them, so forgive me. However, I will
try. I
understand the point that the hon. Gentleman again made about the issue
of “significant extent”. As I said in my opening remarks,
together with all the consultation and advice that we have had, the
Government are trying to weigh the scientific burden of being unable to
use existing cells against the rights of the person who donated those
cells. I am not convinced by the hon. Gentleman’s alternative
wording—he accepts the principle, but is not keen on the word
“significant”. I do not think that the wording he
suggests is a high enough hurdle for researchers. It is important that
“significant extent” is the appropriate test to comply
with and it should not be lowered. The heart of his argument seems to
be that it is too high, but we have set it there because we think it
should be
high.
Dr.
Harris: I accept what the Minister says and that
simply taking out those words is not satisfactory. I suggested that she
might consider using the same wording about the research not being of
comparable effectiveness, which she has deemed satisfactory. I agree
with her about the other provisions that relate to patients without
capacity and children who do not yet have capacity, where there is a
different threshold. My concern is not that “significant
extent” makes the threshold too high, but rather that it is not
easy to interpret. I am at one with her on where she wants to be, but I
wonder whether she will consider the alternative wording.
Briefly, I
received a message from the Medical Research Council and the Wellcome
Trust saying that they support the thrust behind amendment (a) to
Government amendment No. 102. Unfortunately, I do not have that in
writing, so I accept that at the moment it is hearsay, although it
might give the Minister pause to consider the matter, or at least to
agree to think about it a little more.
Dawn
Primarolo: I am absolutely prepared to accept the hon.
Gentleman’s word about who supports the amendment and, of
course, I always take note of those illustrious bodies. However, here
the difference is clear as to why we are not using exactly the same
wording. The wording that is used elsewhere refers to cases that
involve consent from others. We want to connect that with cases with no
consent and have included a worthy higher test for that
reason. I
accept the hon. Gentleman’s argument, and I am always happy to
reflect on any view held by members of the Committee, but this is an
important principle and I am not convinced that other words could be
used or that we should lower the
test. The
hon. Gentleman asked questions to clarify the effect of interactions
between sub-paragraphs (3ZA), (3ZB) and (3ZC). Sub-paragraphs (3ZA) and
(3ZB) clarify the fact that, in the limited circumstances referred to
later in the schedule, the consent of a parent will be treated as
effective consent of the child. That means that all the provisions of
schedule 3 that are attached to effective consent apply to the parent.
For example, the parent is given the opportunity for counselling and
they can vary or withdraw the consent, which is what I said in my
opening remarks.
Sub-paragraph
(3ZC) clarifies the fact that if a child becomes competent to consent,
their parents’ consent is treated as if it were their own, which
enables the child—now competent, which is the point made by the
hon. Member for Boston and Skegness—to choose with consent at
the appropriate time whether they consider it necessary to vary
matters. That will ensure that the embryos are not automatically
destroyed if the child does not want that to
happen. The
hon. Gentleman asked about the interaction starting with parents and
crossing over into a competent child or adult, and the issues of
storage. He also asked about the intentions of proposed new
sub-paragraph (2)(c) in amendment No. 65. The intention is that the
parent, at the outset, will specify what should happen to the embryo
created using the child’s cells if the child dies and if the
parent died later. The consent would have already been given, so
further provision is not needed is such a
case. I
come to amendment (b), tabled by the hon. Member for Oxford, West and
Abingdon to Government amendment No. 102. I took advantage of the break
between the morning and afternoon sittings to discuss matters further.
I am sure that he appreciates that the Government want to ensure the
protection of the rights of the deceased person’s relatives in
cases where their relatives have been identified and the researcher
wishes to use the tissue. However, I understand that there may be an
important point that he is making about when relatives cannot be traced
and whether there should be some qualification on whether relative
consent is
required. I
do not want to make a hasty decision on the basis of today’s
discussion. I am sure that members of the Committee appreciate that we
are discussing a complex set of exceptions that try to take into
account all human rights. However, I want to reflect on our views on
the provision, along with what the hon. Gentleman said about it, to see
whether a slight problem needs to be tidied up. I shall, of course,
keep all members of the Committee informed of the outcome in relation
to our decision. I hope, therefore, that he will not press the
amendment to a Division, but will give us time to consider the
matter. My
last point goes back to that made by my right hon. Friend the Member
for Coatbridge, Chryston and Bellshill about nominating somebody if
there is not a carer to represent a person who is without capacity.
This incredibly important and I bow to his extensive knowledge and
experience in this area. It is crucial that we get this right. We would
expect and require the HFEA to be satisfied that the appointment was
done correctly, that they were representing the individual concerned
and that the researcher had undertaken all the checks possible before
reaching that stage of appointment. I say to my right hon. Friend that
that makes the exceptions very tight indeed and ensures that the
concerns that he and the rest of us rightly hold have been properly
dealt
with. I
think that I have answered all the questions to the best of my ability,
and if I find that I have missed anything when I check the record, I
will be more than happy to write to members of the
Committee.
Dr.
Harris: I confirm that, as far as I am concerned, the
Minister has addressed all the points that I raised on
the amendments and I have no further comments to make on them. I
apologise if I mis-spoke or confused the situation earlier in respect
of issues relating to the
schedule. I
would also like to thank the Minister for considering amendment (b) to
Government amendment No. 102, and I repeat that I do not intend to
press either that amendment or amendment (a) to Government amendment
No. 102. I look forward to hearing the Minister’s
reflections. On
amendment (a), the Minister has confirmed that the test is a higher
one. It is helpful that that is understood, unless one is a researcher
who now feels that he will be disadvantaged, so there are mixed
blessings to these Committee
debates. The
Minister says the test is a higher one because, in the case of the
child who does not yet have capacity or the patient without capacity,
there is a substitute consent involved, whereas here there is not such
a substitute consent. That is the first time that that has been
explained, and I will, if I may, reflect on whether it is therefore a
rebuttal of the argument that the tests should be the same. I hope,
however, that I can reflect on whether there is an alternative wording
that would retain a higher test but was not as open to
interpretation—and possibly misinterpretation—or as
difficult to interpret as the current wording. However, I am grateful
to the Minister for her responses to the points that I
raised.
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