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19 May 2008 : Column 104

Dr. Harris: Will the hon. Gentleman give way?

Mark Simmonds: Let me make a little progress; I will give way to the hon. Gentleman in a few moments.

Will the Minister also clarify what would be allowed under the term “serious” that would not be allowed under “life-threatening” or seriously impairing the “quality of life”? If there are any serious differences, the Committee should know what they are. I understand from lawyers—I say this in response to an earlier intervention—that neither “serious” nor “quality of life” provides the utopian phraseology that would be needed to ensure that this provision is drafted as tightly as it should be.

Dr. Harris: I am trying to be helpful, so I am grateful to the hon. Gentleman for taking my intervention. He said that “serious” was not tight enough, as it was open to interpretation and was essentially subjective. However, the fact that it is open to interpretation is important in clinical practice, because doctors and patients together take decisions that are specific to their circumstances. That is what medical care is. Secondly, if “serious” is subjective—not a bad thing when dealing with patients—so is seriously impairing the “quality of life”. They are both subjective; one is no better than the other in that respect.

Mark Simmonds: That is where we disagree. I think that my amendments are better because they are, in my view, tighter. I accept that there has to be some flexibility—there was a debate in the other place about this issue—in that we cannot have a list of specific diseases or illnesses that will be treated. I understand the decision taken not to accept that: it would be very difficult to agree the list in the first place; and as new techniques came along, the list might have to be amended, which would be complex.

Let me move on to deal with amendment No. 18, which relates to the types of tissue used to create saviour siblings. As I have said before, whole organs are prohibited, but I am still concerned about allowing the removal of parts of organs that might not grow back—hence the issue of regeneration. As the hon. Member for South Derbyshire said, the issue of consent is also relevant. Indeed, consent is rightly viewed as the cornerstone of this legislation. Given that the child cannot possibly give consent, it would be interesting to know whether the consent of the parents overrides any particular ownership of tissue that the child may have. Adults can, of course, consent to kidney donation, but children and certainly saviour siblings cannot.

Let me deal finally with licences for therapy in amendment No. 14. It is similar to amendments Nos. 31 and 32, which were tabled by the hon. Member for Oxford, West and Abingdon. The general thrust of the Bill must be that it should last as long as the 1990 Act. It is a testament to the robustness of debate on that Act that it has lasted for so long. I am sure that the Minister and all other Members of the House who are interested in these issues do not want to have to return regularly to this legislative structure, although I fear that this is one of those areas that may need looking at as technologies and sciences develop.

8.45 pm

Clearly, people believe that scientists may still be a long way off developing cures, but the motivation behind all that research is finding therapies and,
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ultimately, cures. I understand that no provisions in the 1990 Act provide for treating conditions other than those related to reproduction. The HFEA licenses for treatment non-medical fertility services, storage and research, including—correctly—clinical trials. The amendment would enable the HFEA to license the creation and use of embryos for therapy. Again, it would be helpful if the Minister clarified whether my comments are correct.

I understand that if a cell line that could cure an illness was deregulated under current regulations, researchers would have to go back to square one and create another cell line to comply with EU regulations. Clearly, that may well delay the application of the cures and treatments.

John Bercow: I hope that my hon. Friend will forgive me if I press the rewind button and ask him briefly to revert to the issue of consent, on which he touched a few moments ago. I am genuinely slightly puzzled by what he said and I am interested to know his position.

It seems to me to be unavoidably the case that consent cannot be given. I do not see how it can be given retrospectively. My hon. Friend then began to talk about the issue of ownership of tissues. What conclusion has he reached on the point about consent and does it differ from my own and that of the right hon. Member for Knowsley, North and Sefton, East (Mr. Howarth)?

Mark Simmonds: I am grateful for that intervention. I am pressing the Minister on the apparent confusion between the HFEA and the Human Tissue Authority over who is responsible for giving licences.

Of course the cornerstone of this legislation has to be consent, and clearly it must be the consent of the parents that enables a saviour sibling to be created in the first place, but there is confusion and I suspect that the Government are resisting adding “Licences for therapy” to the Bill because of the complex regulatory package that would be required, including the HFEA for embryo research, the HTA for tissues and the Medicines and Healthcare products Regulatory Agency for human applications, although those bodies already act in sequence and it would be possible for them to work together to regulate stem cells derived from human embryos for therapies.

Mr. Burrowes: I am grateful to my hon. Friend for drawing out the complications in dealing with the licensing authorities—within the remit of the Bill, we have only part of the picture. Returning to the principle and the comments on consent made by my hon. Friend the Member for Buckingham (John Bercow), does my hon. Friend the Member for Boston and Skegness (Mark Simmonds) agree that the lack of consent is obviated by retrospective satisfaction? Would he care to comment on whether consent could be given in such a manner?

Mark Simmonds: I do not think that that is right, because we would get into the difficult issue, which was raised earlier, of what would happen if a saviour sibling did not provide a satisfactory conclusion to the illness or the problem. Ultimately, the parents have to make the decision, along with the licensing from the HFEA
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within the legislative structure that we are discussing, but consent has to be the cornerstone—where possible—of the legislation. Of course, if there are to be exceptions, all sorts of other issues will be created, which we shall explore in the Public Bill Committee. We will discuss such things as mitochondria and the potential solutions for those with mitochondrial inherited diseases.

Parliament needs to consider the issue now and not allow it to be slipped through by the HFEA as technology runs ahead of legislation. Indeed, one reason why there has been anxiety and angst is that the HFEA has moved forward as technology has run ahead of the legislation. The Minister will gather from the exchanges and my responses that there is clearly confusion about that issue. Clarity would be helpful.

In response to the hon. Member for Oxford, West and Abingdon, the Minister mentioned that she has received legal advice that there is no necessity to put a licence for therapies into the Bill. While I can quite understand why she does not want another meeting, it would be helpful if she perhaps placed in the Library for those who are participating in the Committee the detailed legal advice that she referred to, which, as I understand it, states that there is no problem with the HFEA licensing stem-cell therapies.

Dawn Primarolo: Let me try to explain the Government’s thinking on clause 11 and schedule 2, and on the issues that have been raised.

The Bill sets out five purposes for which embryos can be tested, and a regulation-making power to amend them. One of the purposes is the creation of so-called saviour siblings. As we have observed this evening, that is an issue that provokes very strong feelings in people on both sides of the discussion. Some feel that the creation of a tissue-matched sibling is entirely appropriate to treat an affected child when it is the only treatment option, and that not to allow it would essentially impose a life sentence on the child. Others feel that, despite that, saviour siblings should not be permitted.

Some parents with an affected child whose only treatment option—perhaps because the child has an unusual tissue type—relies on the creation of a tissue-matched sibling would feel very strongly that the Bill’s proposals offer a practical solution. Having a child to satisfy a particular need, in this case the treatment of a sick sibling, is not uncommon. As the hon. Member for Beckenham (Mrs. Lait) pointed out so eloquently on Second Reading, no one has a child solely for the child’s own purposes. It is often done to satisfy the needs of parents to be parents, or the need for a brother or sister for an existing child.

Let us consider a family who are in that position. The parents love the existing child so much, and are so motivated to do whatever they can to protect that child, that they are willing to undertake embryo testing. Embryo testing is an invasive and expensive procedure, and such motivated parents are highly unlikely to be anything other than loving and supportive to any child born into their family.

Mr. Dominic Grieve (Beaconsfield) (Con): I have been listening carefully to the Minister’s arguments. I also listened carefully to the arguments of the right hon. Member for Knowsley, North and Sefton, East
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(Mr. Howarth). The right hon. Gentleman said that one thing we are not discussing is the creation of designer children, but that is exactly what is being discussed. It would be useful if that could be accepted. We cannot really have a sensible debate without such acceptance, because it absolutely underpins the debate.

Dawn Primarolo: I entirely disagree with that proposition. Regardless of whether the principle of saviour siblings is accepted in the House, there is no suggestion whatever that they would be designer children.

Arguments for banning tissue typing on grounds of psychological harm to the children who are born are difficult to justify, as my right hon. Friend the Member for Knowsley, North and Sefton, East (Mr. Howarth) said in his eloquent speech. In practice, so few families have used the technologies that any children born are so young that it is not possible to draw reliable conclusions about the impact of being a saviour sibling. I absolutely acknowledge that fact, and Members must have that clearly in their minds.

Stewart Hosie: Will the Minister give way?

Dawn Primarolo: As many points have been raised, I would like to make a little progress before taking an intervention from the hon. Gentleman.

The amendments tabled by the hon. Member for Enfield, Southgate (Mr. Burrowes) would ban tissue-typing completely. That would be a backward step, and it would prevent people from accessing treatment to which they currently have access. In practice, tissue-typing is only very occasionally carried out. As has been said, the HFEA has licensed tissue-typing only in a handful of cases, and always for life-threatening conditions. It considers applications for the process on a case-by-case basis, and we would expect it to continue to proceed on that basis. Where it has agreed to proceed—for rare blood disorders—tissue typing already takes place, but that is not specifically set out in the 1990 Act, and this Bill rectifies that. Tissue typing is a treatment of last resort, and while I acknowledge the concerns of many Members, in my opinion and that of the Government there is not sufficient justification to remove the last-chance treatment option for the sick children who would be affected by such a ban.

Tom Levitt rose—

Stewart Hosie rose—

Dawn Primarolo: I shall give way first to the hon. Member for Dundee, East (Stewart Hosie), as I promised to do so.

Stewart Hosie: I have been listening carefully, and I have a genuinely open mind on this bit of the Bill, but many of my constituents are deeply concerned about the concept of saviour siblings. Will the Minister at least acknowledge their fear that a saviour sibling who is born and then fails in their cord blood, marrow or part of an organ to fulfil one of the purposes for which they were born—to save another child—might be left
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utterly bereft and despondent? That is a concern that many of my constituents have for such children in the future.

Dawn Primarolo: I touched on that point. I absolutely acknowledge that in these extremely difficult cases very hard choices have to be made by loving, caring parents about their families, but those same choices are made by parents who already have younger or older children and who, for example, give their consent now for a bone marrow transplant where an existing child might save another child in the family. So these hard choices sometimes have to be made whether or not such a child has been created through the process under discussion. The hon. Gentleman is right to say that there are difficult issues that need to be considered, but they are not unique to the provisions in this Bill.

Mr. Geoffrey Cox (Torridge and West Devon) (Con) rose—

Dawn Primarolo: May I just finish the point before giving way?

I know that I would want to move heaven and earth if my child were involved. Under this clause and schedule, we are asking the House to agree to leave it to the parents who are in this dreadful situation to make an application for the special treatment that is provided—testing within saviour siblings—and to to the HFEA to consider that on a case-by-case basis in order to come to a decision about such families. I say frankly and in all sincerity that unless we are to deny those parents the opportunity ever to access the testing, that is the best that we can currently do in the House with the constraints as they are.

Several hon. Members rose

Dawn Primarolo: I shall give way to my hon. Friend the Member for High Peak (Tom Levitt) and then to the hon. and learned Member for Torridge and West Devon (Mr. Cox).

9 pm

Tom Levitt: My right hon. Friend rightly identifies the motivation of the parents involved. I hope to catch the eye of whoever is in the Chair in order to tell the story of a constituent who is in one of the six families who have been licensed for this procedure so far. May I assure her that in their case it is not a question of a traditional treatment or even of the cord blood bank, which is not suitable in this case, because the alternative is to watch a young child have a slow, lingering, dreadful and early death?

Dawn Primarolo: I know, and I am sure that every Member in the House this evening and those listening to our proceedings elsewhere in the House will dread the prospect that, as a parent, they might ever be in that position. These are difficult issues, but we must assure ourselves that we do not deny the parents, who ultimately are the people who must decide to have access to this testing. We must satisfy ourselves in the House that such a process is properly regulated to deal with the unique circumstances that might arise. I promised to give way to the hon. and learned Member for Torridge and West Devon, so I shall do so.

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Mr. Cox: Is not the difference between the normal situation—one calls it normal because we are dealing inherently with the abnormal in these circumstances—where a parent is faced with the choice of whether to give approval for an invasive procedure on an existing child whose tissue matches that of another, and a situation where a child has been deliberately conceived and bred for the purpose, that faced with the latter situation a parent would be under enormous pressure and would not, in law, be regarded necessarily as an independent and impartial person capable of taking a decision on consent in the best interests of that child? So we have a problem of consent. Is not the difference that in one case the child is bred for the purpose whereas in the other it is not and the parent is simply weighing impartially between the two children the interests of each?

Dawn Primarolo: The hon. and learned Gentleman picks unfortunate phrases in articulating his point this evening. The proposition is that somehow parents would approach this matter lightly and that, in the occasions that we can examine, they have had other children in the hope that there would be a tissue match. It is incredibly unfortunate that they could possibly be accused of being disrespectful or of entering into breeding a child—as he puts it—in a cavalier or unreasonable way. I would also say to him that before the HFEA issues the licence, it has to satisfy itself, within the terms and conditions of the legislation, that such a licence should be provided. Consideration would be given to all the details, to the motivations and to the appropriateness of such a licence being given in order to deal with these difficult choices. Before I move on to deal with the amendments, I shall give way once more, to my right hon. Friend the Member for Knowsley, North and Sefton, East.

Mr. George Howarth: A few moments ago, the hon. and learned Member for Beaconsfield (Mr. Grieve) made the allegation that schedule 2 and the relevant clause were really about authorising designer babies. May I draw his attention to proposed new paragraph 1ZB(1), in schedule 2? It states:

If the sex of the child cannot be determined, it is hardly possible that it can be a designer child.

Dawn Primarolo: My right hon. Friend makes a fair point. What is at issue is whether hon. Members agree in principle with saviour siblings, as my right hon. Friend pointed out in his speech. It would help the debate enormously if Members concentrated on what is actually in the Bill and what it would and would not permit, as my right hon. Friend did, rather than on their fears or their hopes in an attempt to undermine the principle.

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