Mark
Simmonds: I am grateful to the Minister for that
clarification. On the basis of her response both to my questions and to
the amendments that I have tabled, I beg to ask leave to withdraw the
amendment. Amendment,
by leave,
withdrawn. Amendments
made: No. 45, in
clause 25, page 26, leave out lines 22 to
41 and insert— ‘(g) the
disclosure is made so that no individual can be identified from the
information, (h) the disclosure
is of information other than identifying donor information and is made
with the consent required by section
33AB,’. No.
46, in
clause 25, page 26, line 41, at
end insert— ‘(ja) the
disclosure— (i) is made
by a person who is satisfied that it is necessary to make the
disclosure to avert an imminent danger to the health of an individual
(“P”), (ii) is of
information falling within section 31(2)(a) which could be disclosed by
virtue of paragraph (h) with P’s consent or could be disclosed
to P by virtue of subsection (10),
and (iii) is made in
circumstances where it is not reasonably practicable to obtain
P’s
consent,’. No.
47, in clause 25, page 27, leave out lines
38 to
50. No.
48, in clause 25, page 28, leave out lines
1 and
2. No.
49, in
clause 25, page 28, line 7, leave
out from ‘of’ to ‘or’ in line 12 and insert
‘identifying donor
information,’. No.
50, in clause 25, page 28, leave out lines
18 to
30. No.
51, in
clause 25, page 28, line 36, leave
out ‘treated together with another’ and insert
‘who is treated together with, or
gives a notice under section 37 or 44 of the Human Fertilisation and
Embryology Act 2008 in respect of,
another’. No.
52, in clause 25, page 28, leave out lines
39 and
40. No.
53, in
clause 25, page 28, line 45, at
end insert— ‘( ) In this
section “identifying donor information” means information
enabling a person to be identified as a person whose gametes were used
in accordance with consent given under paragraph 5 of Schedule 3 for
the purposes of treatment services or non-medical fertility services in
consequence of which an identifiable individual was, or may have been,
born.’. No.
54, in
clause 25, page 28, line 45, at
end insert— ‘33AB
Consent required to authorise certain
disclosures (1) This
section has effect for the purposes of section
33A(2)(h). (2) Subject to
subsection (5), the consent required by this section is the consent of
each individual who can be identified from the
information.
(3) Consent in respect of a person who has not
attained the age of 18 years (“C”) may be
given— (a) by C, in a
case where C is competent to deal with the issue of consent,
or (b) by a
person having parental responsibility for C, in any other
case. (4) Consent to disclosure
given at the request of another shall be disregarded unless, before it
is given, the person requesting it takes reasonable steps to explain to
the individual from whom it is requested the implications of compliance
with the request. (5) In the
case of information which shows that any identifiable individual
(“A”) was, or may have been, born in consequence of
treatment services, the consent required by this section does not
include A’s consent if the disclosure is necessarily incidental
to the disclosure of information falling within section
31(2)(a). (6) The reference in
subsection (3) to parental responsibility
is— (a) in relation to
England and Wales, to be read in accordance with the Children Act
1989; (b) in relation to
Northern Ireland, to be read in accordance with the Children (Northern
Ireland) Order 1995; (c) in
relation to Scotland, to be read as a reference to parental
responsibilities and parental rights within the meaning of the Children
(Scotland) Act 1995.’.—[Dawn
Primarolo.] Clause
25, as amended, ordered to stand part of the
Bill.
Clause
26Mitochondrial
donation Question
proposed, That the clause stand part of the
Bill. 11.45
am
Mark
Simmonds: There may be a logical reason for it, but why is
such a clause placed at this part of the Bill and not sequential to
clause 3, because that was when we discussed mitochondrial donors? It
does not seem to fit
here. I
want to ensure that I, as well as other members of the Committee,
understand the clause correctly. It deals with proposed new sections
31ZA to 31ZE. Will the Minister confirm that that means that the
offspring has the right to find out about the mitochondrial donor and
the donor’s children? Does the mitochondrial donor have the
right to find out about the ensuing offspring, despite the fact that
only 0.5 per cent. of their genetic material is in the child and does
not have any defining characteristics
whatever?
Dawn
Primarolo: I can answer the second question; I do not know
about the first. The hon. Gentleman might recall that we had an
extensive discussion on the right to know and information about
mitochondrial donations. The hon. Member for Oxford, West and Abingdon
asked whether there would really be a need for the mitochondrial donor
to be identified. We agreed at the time that, because regulations are
connected with such information, such issues were exactly the type that
would need to be consulted on, and that the regulations would need to
be seen in draft.
Mark
Simmonds: I have a clear recollection of that discussion,
but my reading of the Bill is that proposed sections 31ZA to 31ZE give
the offspring the right to find out about the mitochondrial donor and
the donor’s children. The Minister is suggesting that that is
not the
case and that, subject to consultation, such matters will be dealt with
in subsequent regulations. I accept that I might have misinterpreted
the Bill, but I should be grateful if she could clarify
matters.
Dawn
Primarolo: I can clarify that that is the case. The
regulations deal with that entire part, so it will be possible to take
it forward. The requirement is not
linked.
Dr.
Harris: Proposed new section 35A(1) states that
regulations “may
provide for any of the relevant
provisions”, and
the hon. Gentleman has described some of the provisions. As I have
said, I am dubious whether a system needs to be set up for a healthy
child who has no relevant genetic parentage—in my
opinion—to be invited to consult a register and so on. Arguably,
it is part of the private medical history of the parent even though it
impacts on the child, but children do not have the right to know that
their mothers had tubal surgery, for example. Such matters will need to
be debated before regulations
emerge.
Dawn
Primarolo: I absolutely agree. When the hon. Gentleman
made that point, with justifications that he felt supported that view
on access to information, he put it clearly. At the time I also said
that in my view—this is certainly provided for as regards
regulations—the issue is a matter for debate and consultation,
which would need to take place before the regulations are drafted.
There would then be consultation on the draft regulations before they
went through the affirmative procedure in both Houses.
The measure
appears where it does in the Bill because it contains regulation-making
powers, and they tend to be placed at the back of an Act, in relation
to the points that they connect to, so it is about drafting
legislation. I say in all honesty to the hon. Member for Boston and
Skegness that that is the advice from advisers, parliamentary counsel
and all those who regularly write legislation. I tend to worry about
the bigger issues of principle, rather than the consequential
sequencing of the clauses. I hope he accepts that.
Question
put and agreed
to. Clause
26 ordered to stand part of the
Bill.
Clause
27Fees
Mark
Simmonds: I beg to move amendment No. 155, in
clause 27, page 31, line 13, leave
out ‘revocation
or’. This
is a probing amendment to elicit from the Minister an explanation of
why the authority has the power to charge for a revocation of a
licence, and what happens in circumstances where the licensee who has
had his or her licence revoked refuses to pay, or their business is
wound up and no longer exists. Is it right that the licence is revoked
at the discretion of the authority and that therefore the licensee is
charged—the authority can both revoke the licence and make a
charge—particularly since the Bill does not state that the
charge may only cover costs and not generate revenue for the
authority?
Dawn
Primarolo: The hon. Gentleman raised points earlier about
the responsible person if a licence were revoked or a request to revoke
a licence were made by the clinic. He made specific reference to the
provisions for patients who might already be having treatment, and to
ensuring that the storage of embryos, material and information is done
in the proper way. I made it clear to him that those matters were
requirements of the licence. The payment of the fee is to ensure that
those arrangements can be made, and it may be that it is transferred to
another clinic for treatment, for instance, or for
maintenance.
The
circumstances for a clinic that was closing down and submitted that it
wished to have its licence revoked would be rather different to cases
where the HFEA was revoking a licence for its own reasons, but none the
less, administrative expenses would occur both for the HFEA and for
patients going to other areas. It is not about income generation for
the HFEA. As was said in our earlier discussion about fees charged by
the HFEA, it may charge a fee, but it does not have to do so. Specific
provision is not made in the Bill for such charges, but it is envisaged
that they would be covered, because there would be consequential
expenses. I assure the hon. Gentleman that it is not about income
generation for the authority. I hope that that covers his
questions.
Mark
Simmonds: I am grateful for the Minister’s
clarification that total revocation of the licence and charges related
to that are not temporarily—essentially—income
generating. Has any thought been given to a charge that might have been
made to a licence holder who has had the licence revoked and who
refuses to pay? Would that bar, for example, somebody from getting a
licence in the future?
Dawn
Primarolo: That would clearly reflect on the responsible
person, and whether they were responsible enough to have a future
licence, bearing in mind how they discharged their responsibilities for
a licence that they no longer have. Either they revoked it themselves
by wishing to withdraw from the licence, or the HFEA revoked it because
of breach of licence. It comes back to that debate about responsible
people.
Mark
Simmonds: I am grateful for that intervention, and I
certainly do not wish to push amendment No. 155 to a vote. On that
basis, I beg to ask leave to withdraw the amendment.
Amendment,
by leave,
withdrawn.
Mark
Simmonds: I beg to move amendment No. 156, in
clause 27, page 31, line 26, at
end insert ‘set out in
regulations laid in draft before and approved by a resolution of each
House of
Parliament.’.
The
Chairman: With this it will be convenient to discuss
amendment No. 157, in clause 27, page 31,
line 38, leave out ‘may’ and insert
‘must’.
Mark
Simmonds: The amendments relate again to the fees that the
HFEA can charge. I will detail what they would do, and then I want to
talk a little more, if I may, Mr. Hood, and ask the Minister
to provide information about the charging structure and the
HFEA’s fees.
The Bill as
drafted allows for the fees to be fixed by the authority with the
approval of the Secretary of State and the Treasury. Amendment No. 156
would ensure that the fee is fixed in Parliament through regulations,
which would go some way to ensuring that the fee is fair and
proportionate and would not necessarily be passed on disproportionately
to the patients by the clinics. The Minister will be aware of the
enormous concern about that within both main political
parties. On
amendment No. 157, the Bill as drafted says that any fee charged for
the provision of information about genetic offspring, siblings or a
potential partner, may have regard to the costs incurred, which clearly
also implies that it may not have regard to the costs incurred. The
amendment would change that “may” to
“must”, which would therefore mean that fee charging must
not be a revenue-raising exercise. I was grateful for the
Minister’s confirmation that the fees charged for the revocation
of a licence would not be a revenue-raising exercise and that the
charges must be in direct proportion to the costs incurred in providing
that information. The amendment would ensure that the fee charged is
proportionate to the costs incurred in obtaining and providing that
information. With
your permission, Mr. Hood, I would like to broaden the
debate in terms of the charging structure of the HFEA, which relates to
the amendments. I should like to elicit from the Minister some of
the—
The
Chairman: Order. I must ask the hon. Gentleman not to go
there. He may want to raise those points in our debate on clause stand
part, but not in relation to the
amendments.
Mark
Simmonds: I am grateful for that advice, Mr.
Hood, and I look forward to catching your eye
then.
Robert
Key (Salisbury) (Con): It is a pleasure to serve under
your chairmanship, Mr. Hood. I support amendment No. 156,
and if this Bill is sublime, then I should like to introduce the
Committee to the ridiculous. First, I want to consider the principle
behind the charging
regime. Several
years ago, on behalf of a constituent, I challenged the HFEA on the
fees that it was charging for in vitro fertilisation treatment, and I
was told that the Treasury insists on the fees being charged. Indeed,
clause 27 inserts proposed new section 35B(2), which, as my hon. Friend
said, gives the Treasury the final word on these fees.
The Treasury
does not object to NHS dentists charging for certain procedures and
contraptions, and it seems that it does not object to NHS eye tests
that result in contact lenses being purchased by patients. On the other
hand, the NHS does not allow people to buy drugs that have not been
approved for NHS use by the National Institute for Health and Clinical
Excellence. It says—entirely out of spite, it seems—that
the whole course of treatment might be jeopardised if additional drugs
are purchased. The Department of Health therefore seems to be in a
complete muddle about charging
structures.
12
noon On
my second point, proposed new section 35B(5)
says: “the
Authority may have regard to the costs incurred”.
It is often said that
this is all about legal fees, which might be huge. However, if legal
fees are incurred in the health service—for example because an
orthopaedic procedure goes wrong and results in litigation—the
hospital or department concerned does not have to pay the legal costs
involved in meeting that challenge. How, therefore, can it be justified
to reflect legal costs in the fees charged to clients and patients
under the HFEA regime?
Proposed new
section 35B(6) says that the HFEA
“may fix
different fees for different
circumstances.” Will
the Minister clarify that? Does that mean that the authority can charge
different fees for the same HFEA functions under different
circumstances? If so, who will make the decision? What will the
criteria be? Will the Minister give us examples of what is meant by new
section
35B(6)? How
are our constituents affected by this regime? The cost of each IVF
cycle to our constituents is about £3,500 for fresh gametes and
£1,000 for frozen gametes.
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