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Mr. Burrowes:
That is a helpful intervention, because the distinction must be borne in mind. With saviour siblings, we are dealing not just with a fortuitous
match, but a child who has been deliberately created and tissue typed for the purpose of matching the sick sibling. That is the deliberate reason for their creation. When one comes before the Human Tissue Authority, one cannot be wholly sure about the dangers that I have set out—that the child will be a lifelong donor—because it has not been possible to provide the cord blood or bone marrow match as a resource, but the sick sibling in that family still needs the cure for their debilitating illness, but has an immune, matched sibling, who has a genetic footprint that potentially provides the answer.
Dr. Harris: Will the hon. Gentleman give way?
Mr. Burrowes: I want to extend my argument.
The pressure is there. It is not beyond the realms of reason that the Human Tissue Authority would, in time to come, question the signal that the House had given it on saviour siblings.
Mr. Kevin Barron (Rother Valley) (Lab): Will the hon. Gentleman give way?
Mr. Burrowes: As it is a new hon. Member intervening, I will.
Mr. Barron: I do not know whether the hon. Gentleman has ever read the Hansard report of the debate on the legislation that introduced the Human Fertilisation and Embryology Authority, but I was involved in those debates on the Opposition Benches, many years ago. Many of the arguments that he is rehearsing were made then, too, albeit in a different light, but most people in our society—and, I suspect, most people in the House—have had great confidence in that authority over the past 17 or 18 years, and are confident that in future it will do nothing more or less than what society would allow it to do.
Mr. Burrowes: It is perhaps regrettable that we in this House cannot consider the Human Tissue Act 2004 in the context of saviour siblings, and debate it more fully so that the House can be clear about its intentions. The Human Tissue Authority—or, indeed, lawyers—might be seeking to make the case that Parliament would effectively be sanctioning the creation of a sibling for the specific purpose of tissue matching. If the alleviation or cure does not come through the use of cord blood or bone marrow, the next considerations will be about other tissues and whether there should be other donations.
The burden on the sibling and the parents to find the cure, which they see before them in the saviour sibling, would be immense and might be of concern psychologically. The argument has been made that such a situation might, alternatively, help the family to bond. What would happen if a person who has been created to cure or help their sibling cannot do so? The pressure would continue. What would be the psychological impact on a saviour sibling of knowing that they were created for a purpose that they cannot achieve? There is no evidence on that, but the burden is on the Government to establish whether there has been any assessment or study of the psychological impacts.
Dr. Harris: What is the difference between a saviour sibling being unable to fulfil such hopes, despite tissue typing, and a sibling who was not tissue matched also being disappointed because they cannot provide tissue? That is simply a sad situation, and the hon. Gentleman has produced no evidence that the sense of disappointment would be greater simply because the parents had tried harder in that situation. At least they would have tried their best.
Mr. Burrowes: My response to that is similar to my response to the hon. Gentleman’s previous intervention: those cases are entirely different. We are dealing with a sibling who has been created specifically because of their tissue match and genetic footprint to find a cure for their sibling. The case of another sibling would be wholly different.
I should like to move to the Human Tissue Act test and consider the best interests of the child in relation to donation. The best interests test includes not only medical considerations, but a person’s social, psychological and emotional best interests. That is why the psychological impact is relevant. Those interests would have to be examined if there were an application for donation. That could leave a child in a vulnerable situation and under unique internal and family pressures, having been created specifically to be a donor for the elder sibling. They could be put in a situation in which their older sibling might die if they do not provide the required organ. Those are considerations that could well arise in a chain of events, and it is therefore important that we do not simply rely on the safeguards in the Bill or even those suggested in amendments.
We must consider carefully, rely upon and uphold the important principle that we should not deliberately create a child for the benefit of another. The way to respond to this issue is not simply through prohibition but by promoting an area of resource—umbilical cord blood stem cell research. What is happening is a crying shame; there is a moral imperative on the Government to have more than four hospitals collecting cord blood. It imperative that we do not lag at 13th position in a league table of 17 countries for our collection of cord blood units per inhabitant. We are way behind other countries. It is imperative that we inform parents of the value of cord blood and of the opportunities to collect it, and that we encourage collection so that we have that ready resource that can provide the match and cure for parents who desperately want a cure for their children. On those points of principle, I invite hon. Members to support my amendment. We should not countenance a break in the principle, effectively, that a means justifies the end.
Mr. Todd: I have a brief speech to make on a narrow point of concern. What we are sanctioning in this debate is the use of an invasive procedure on a child without their consent and without their gaining any direct benefit from that intervention. There has been speculation that such a child might benefit from feelings of good will towards the sibling that they might or might not have helped, but there is no certainty of that. I shall dwell on those elements, starting with consent.
There are many procedures for which children are not required to give consent. My son has had to undertake certain procedures on the basis that I have
consented to them, and that is an entirely familiar principle in law. However, such procedures are usually associated with the principle that that child—the focus of this speech is that the child is an autonomous being in this matter—should derive some benefit from the procedure that they are undergoing. If the parents’ consent is not directly associated with that child enjoying a benefit, but is so that another child will enjoy a benefit, we should reflect on that with some care.
The Bill sanctions invasive procedures. In the preceding speech, the hon. Member for Enfield, Southgate (Mr. Burrowes) made the point that that can occur in a variety of different ways that are sanctioned in the Bill. The commonest method will be concerned with bone marrow extraction, which my right hon. Friend the Member for Knowsley, North and Sefton, East (Mr. Howarth) described as an unpleasant procedure. Like any invasive procedure, it is not without risk. It carries a low risk, but it could go wrong. If the Bill excluded such steps and instead relied entirely on non-invasive procedures, I would probably accept the wording, but it sanctions a procedure that could, as has been said, involve the extraction of a part of a child’s body, and could certainly involve the extraction of bone marrow.
Patrick Hall: Does not bone marrow biopsy already take place? The point has been made that that is not with the informed consent of the child, but it could not be, because a child is not of legal majority. None the less, such procedures already take place to try to help a sibling, so what is the difference in principle? If a child were created partly for that purpose—it would also be because they were wanted—that bone marrow could not be removed for at least a year after they were born, so what is the difference from existing procedure?
Mr. Todd: I must say that I have some anxiety about existing practice sanctioning a potential injury to a child from which they will not derive any direct benefit, but in this instance I rely on the argument that was made in the preceding speech: the child will have been engineered specifically for that purpose rather than being created naturally. I do not regard the circumstances as being precisely comparable, but I take the point that there is a part answer to the ethical issue that I have raised.
Lastly, the potential psychological impact on the child has been discussed. I think that all our remarks on this point are speculative. As has been made clear from the start, the sample involved is likely to be tiny and is tiny now. There is no basis on which anyone can do anything other than guess what the impact on a child might be. The positive constructions that have been suggested are perfectly possible, and a child might well feel greatly loved and that it had contributed greatly in love to its sibling. However, it is also possible that much more negative feelings might arise. I personally feel that I cannot second-guess that in law, but that is what we are implicitly doing in the Bill, as it is currently worded.
Mark Simmonds:
It is a pleasure to follow the hon. Member for South Derbyshire (Mr. Todd), who made a thoughtful and thought-provoking speech, as did the right hon. Member for Knowsley, North and Sefton,
East (Mr. Howarth), whose logical and engaging speech carefully deconstructed the arguments that have been put forward against saviour siblings. My hon. Friend the Member for Enfield, Southgate (Mr. Burrowes) made a very principled speech, and he was right to highlight the fact that we must not consider this important issue in an ethical vacuum. I have enormous respect for him, and he was right to highlight the concerns that exist about the HFEA. He was also right to emphasise the importance of cord blood. I do not agree with his amendments, however, which would effectively prohibit saviour siblings. As a father of three young children, who are thankfully very healthy—sometimes too healthy—I have great sympathy with those who are not fortunate enough to have such healthy children. I therefore understand why such people would do anything that they can within the structure of the law to enable their sick child to survive.
8.30 pm
I want to speak specifically to the amendments to clause 11 and schedule 2. I also want to make some generic comments about this part of the Bill, because I understand that there are certain matters that we will not be allowed to discuss in the Public Bill Committee, and we might not have time to discuss them on Report, which will last for only one day.
The Bill is absolutely right to outlaw sex selection for non-medical reasons. However, pre-implantation genetic diagnosis—PGD—will be permitted if there is a significant risk of a child developing
“a gender-related serious physical or mental disability, a gender-related serious illness, or any other gender-related serious medical condition”.
I want to return to the use of the word “serious” in a moment.
I support this general proposal, which will allow families who know that they are at risk of passing on a serious genetic condition to their offspring to test the embryos and to implant only an embryo that is free of the disease. The hon. Member for Oxford, West and Abingdon (Dr. Harris) pointed out that it was not compulsory for parents with genetic illnesses to use PGD. It is not discriminatory, but it is right that it may not be used to select any positive characteristics.
The Bill also permits the selection of embryos to provide compatible
“cord blood stem cells, bone marrow or other tissue”
to a sibling with a serious medical condition. One of the amendments tabled in my name refers to “other tissue”. I will expand on that a little later. Cells are normally taken from the umbilical cord of the saviour sibling or, if that is not successful, from their bone marrow.
Of course this is controversial, but the creation of saviour siblings is currently occurring. It is very rare; I understand that, to date, the HFEA has licensed tissue typing for only six families. This is available only when all the other options are exhausted, and when there is no match on the bone marrow register, the NHS cord blood bank or other blood banks or within the family. We all hope that the number of cord blood banks in this country will be increased, and that the amount of cord blood that is thrown away will be significantly reduced. However, any decision to use
that tissue must be a matter for the Human Tissue Authority to determine, rather than the HFEA.
As we have heard in the debate, there are serious concerns about the use of saviour siblings, and the HFEA and the HTA must consider closely each application to ensure that it is justified and necessary, and that there is absolutely no alternative. We have also heard discussions about the worth of the saviour child. I do not agree that the provisions would undermine that child’s worth, particularly if the child were born into a loving, caring family, as it inevitably would be. In fact, the opposite impact would be achieved if a child knew that it had saved one of its siblings.
The amendments tabled in my name and that of my hon. Friend the Member for South Cambridgeshire (Mr. Lansley) include amendment No. 15. Its effect would be to tighten the circumstances in which embryo testing can be carried out, so that it could take place only when an illness was life-threatening or severely impaired a person’s quality of life. These provisions would replace the word “serious” that is in the Bill at the moment. Amendments Nos. 17 and 16 would do similar things in different parts of the schedule.
Dr. Evan Harris: Is the hon. Gentleman convinced that substituting the words
“severely impairs their quality of life”
would tighten the provision that currently refers only to “seriously”? In other circumstances—I am not suggesting that this would apply in circumstances such as these—we know of conditions that seriously impair the quality of life. Myalgic encephalopathy is an example. However, other serious conditions that perhaps carry a risk of sudden death are otherwise asymptomatic and do not impair the quality of life. Is the hon. Gentleman really tightening up the provision, or simply creating more flexibility?
Mark Simmonds: I understand the hon. Gentleman’s point. The legal advice that I have received on this is contradictory; I must be honest about that. However, everyone says that the use of the word “serious” does not create a very tight provision, and that any effort to tighten the clause would therefore be welcome. I shall say more about that later.
Amendment No. 18 would insert the word “regenerative”. This goes back to the point made by my hon. Friend the Member for Enfield, Southgate about the words “other tissue”. It would be helpful if the Minister could stipulate exactly what other tissue this means. I have no wish to duplicate the debate that took place in another place, in which it was made clear that this was not intended to include the removal of whole organs. I understand, however, that it could mean not only bone marrow and biopsies but partial organ removal, and that those organs—for example, a significant chunk of a liver—might not grow back. It would be helpful if the Minister could tell us whether that is being considered in this regard.
Dr. Harris: Actually, I would like to use the liver as an example of something that might be caught by the hon. Gentleman’s amendment, because it does regenerate, particularly in young people. Including it might make the liver an organ that the courts might deem the House to have considered. The liver is not the best example to use of an organ that does not regenerate.
Mark Simmonds: I take the hon. Gentleman’s point, but that is not my understanding of the situation. I am told that it depends on how much of the liver is taken. A significant percentage can be taken, even from a young person, and the person will still survive with the remnants of their liver. Not all of their liver will grow back, however. The Minister needs to tell the House whether that would be the impact of the amendment that I have tabled. A kidney is perhaps another example. People have two kidneys, and if one were taken, a person would survive. I understand, however, that that would not be allowed under these provisions because it would involve a whole organ being removed.
Greg Clark (Tunbridge Wells) (Con): Does the key distinction relate not to the difference between regenerative and other tissue, but to the invasive techniques that are required? These were referred to by the hon. Member for South Derbyshire (Mr. Todd). Many of us would be content for stem cells from cord blood to be used, because that does not involve invasive techniques, but we have concerns about the necessity literally to invade the body of a child in order to provide some of the other kinds of tissue.
Mark Simmonds: I understand my hon. Friend’s point, but I would raise with him in response the issue of what would happen if a saviour sibling were born and the umbilical cord were wrapped around the baby’s neck and had to be discarded. Is my hon. Friend suggesting that the parents would have to take a decision to have another saviour sibling that would generate the particular cord blood or other tissue required to save the elder child? I do not think that that would be acceptable, which is why I believe that invasive procedures such as removal of bone marrow should, as a last resort, be allowed for saviour sibling purposes.
Amendment No. 19 would remove the regulation-making power from the Secretary of State. It is a probing amendment. It would be helpful if the Minister put on record the circumstances in which embryo testing could be licensed and if she clarified which particular circumstances the Government envisaged might be changed in the process of licensing. Would it include circumstances in which seriousness is diluted even further than I believe it is at the moment? Will she also confirm that any changes to the powers for regulating saviour siblings would be put before the House in the form of regulations, requiring the affirmative resolution procedure?
The issue of seriousness is relevant to amendments Nos. 15, 16 and 17 on the circumstances in which a saviour sibling can be created. They are too open to interpretation. Reservations relate to how an illness will be defined as “serious” and by whom. What will be serious to one party may not be so serious to others. In my view, using the words
“life-threatening or severely impairs their quality of life”
makes it more specific to an individual, which the term “serious” is not. I understand why the Government do not want only the term “life-threatening” in the Bill, which is why I have insisted that “quality of life” should also be in the provisions. Some serious illnesses may seriously impact on the quality of life of an individual without actually killing that individual. Clearly, a saviour sibling may resolve that particular problem.
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