Human Fertilisation and Embryology Bill [Lords]

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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.
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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