Human Fertilisation and Embryology Bill [Lords]
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Amendment, by leave, withdrawn.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 Ps 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 Ps 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 As 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.
Question proposed, That the clause stand part of the Bill.
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 donors 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 donors children. The Minister is suggesting that that is not the
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.
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 parentagein my opinionto 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 viewthis is certainly provided for as regards regulationsthe 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.
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 chargedthe authority can both revoke the licence and make a chargeparticularly 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 Ministers clarification that total revocation of the licence and charges related to that are not temporarilyessentiallyincome 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.
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 HFEAs 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 Ministers 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 saysentirely out of spite, it seemsthat 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.
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 servicefor example because an orthopaedic procedure goes wrong and results in litigationthe 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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