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We should ensure that we provide sufficient flexibility in the Bill to allow new therapies to be developed that at the moment are nothing more than theoretical possibilities. For example, the only conditions that can currently be treated by saviour siblings are those that can be cured through bone marrow or umbilical cord blood cells. In future, scientific techniques may have advanced so that other cells, perhaps from the umbilical cord itself, may be of use. It is, therefore, important to include such possibilities to maximise the potential to develop new cures and therapies.
Finally, there is a powerful moral argument in support of the measures in the Bill. Subject to the safeguards it contains, we should allow medicine to intervene to save lives and to reduce suffering wherever possible.
Mr. Burrowes: Before moving on to saviour siblings, I would like to deal with the amendments in the name of the hon. Member for Oxford, West and Abingdon (Dr. Harris), including amendments Nos. 24 to 28, which would significantly widen the embryo testing provisions from a situation where there is a risk of a gene chromosome of mitochondrian abnormality to cases where there is a risk from a harmful genotype or any other harmful gene. One has to raise the question of what a harmful gene or chromosome is. How is harmful defined? To whom is it harmfula society that cannot tolerate disease? My concern about the amendments, and the Bill itself, is the value we put on life, and whether we seek to focus on the quality of life and make the judgment that some lives are more valued than others. I am particularly concerned about that lack of definition in the amendments.
Dr. Evan Harris: I would like to draw the hon. Gentlemans attention to proposed new paragraph 1ZA(2) in schedule 2(2), which states that not only does there have to be an abnormality or a harmful combination of genes, but also
a significant risk that a person with the abnormality will have or develop a serious physical or mental disability, a serious illness or any other serious medical condition.
Whatever that threshold isthe hon. Gentleman may think that it should be life-threatening, if anythingthose conditions still have to be satisfied. There is no way one could widen the number of people to whom the provisions apply. It is just the way we define what it is that creates the risk that is at stake in the amendments.
I am grateful for that intervention because it is the issue of definition that concerns me. Amendment No. 25 sets out an extension to harmful genotypes. I have looked up the meaning of genotype, and it includes a range of definitions of the genetic make-up of an individual. Genotype can also be defined as the physical or psychological genetic potential of a person when bornfor example, someone born with a genetic predisposition to depression. However, whether that person develops depression depends on their upbringing and environment. I looked further at
the definition of genotype, and it is defined as ones genetic potential when born, physically and psychologically. Someone may be born with the physical genotype to play football for his or her country. One would have to judge whether it would be a harmful genotype that led someone to play football for England, Scotland or Wales. One certainly would not want to include a definition of genotype in relation to this area of the law.
I wish to press amendment No. 4 to a Division because it raises important issues of principle that I do not believe are met by the safeguards, which we shall debate later. The safeguards are helpful to the debate, and they have been discussed in detail in the other place. Nevertheless, it is important for this House to decide for the first time on the principle of saviour siblings. Indeed, that is one of the reasons we are discussing the matter in a Committee of the whole House. It is an important issue of principle.
I listened carefully to the right hon. Member for Knowsley, North and Sefton, East (Mr. Howarth), for whom I have great respect. It is certainly important that we do not simply consider the matter in some vacuum of principle away from the application of the real issues of anguish that have been mentionedthe cases we have heard that, for the avoidance of repetition, I will not go over in detail. The whole House shares considerable concern for those parents caring for a seriously ill child, and understands their desperate search for a cure. After they have been through all avenues to seek a matchfrom bone marrow or any available cord bloodand are told of an opportunity to create a sibling to provide a match, one can understand why they would want to consider that option. It is important that we take account of those concerns and recognise that they are rare concerns. I heard clearly the Governments response on Second Reading that the measure is one of last resort, but it is important that the House deals carefully with the ethical principles involved.
Dr. Iddon: Would the hon. Gentleman agree with many other Members that it is better to regulate saviour sibling technology tightly in this country instead of forcing people such as the Whitakers to travel long distances at a traumatic period in their lives? They went to Chicago, as we have already been told.
Mr. Burrowes: It is important for Parliament to have legislation that deals with the citizens of this country and to ensure that it is based on sound ethical principles. We need to do that and be vigorous, rather than simply devolving and delegating matters to a regulatory authority. Indeed, good practice might suggest that we devolve the matter to a court. I want to go through those issues and the safeguards in detail shortly.
First of all, however, it is important to consider the issue of principle. The important principle that we need to vote on today is whether it is legitimate and right deliberately to create a baby who has the same tissue type as a sick sibling with the intention of harvesting the cord blood, bone marrow or other tissue. Do we wish to do that, having taken into account the concerns of parents who are desperate for a match for an existing child? We need to ensure that we take account of those concerns. We have a duty as a caring society to
offer all the services we can through modern medicine, and to ensure that there is a cure available, or an alleviation of those parents concerns. I want to deal with those matters, too.
It is important that we do not make decisions in a moral vacuumI do not believe that any hon. Member wants to do that. While taking account of parents concerns, we must keep hold of the important principle that a child should not be deliberately used or created for the benefit of another, no matter how pressing the need.
Dr. Desmond Turner (Brighton, Kemptown) (Lab): The hon. Gentleman is rightly concerned about moral principle. If amendment No. 4 is passed, a fewfortunately not manychildren will die because they cannot be treated. There is a moral imperative, if therapeutic measures existthey do in the case we are considering, through scientific advances, pre-implantation genetic diagnosis and the tissue typing of embryosto use them to save life. What is his reaction to that?
Mr. Burrowes: My reaction to that moral imperative, which has existed for several years, is to challenge the Government about the extent to which they are properly focused on and investing in umbilical cord blood to ensure that the necessary resources are available. We can then join Peter Braude of the Royal College of Obstetricians and Gynaecologists, who chaired the committee on cord blood. When asked about saviour siblings, he said that the need for donor siblings would be temporary and that, in future, he hoped that stem-cell supply, especially the use of cord blood from national cord blood banking, would virtually remove the need for donor siblings.
David Howarth (Cambridge) (LD): The hon. Gentleman mentioned the moral principle that people should not be merely means rather than ends. I agree. It is also important that harm is not done to the resulting children. However, I do not understand how those principles apply to the cord blood in a saviour sibling because no person is being used merely as a means and no harm is being done to a person.
Mr. Burrowes: Many hon. Members would be satisfied if the saviour sibling provided the cord blood. Indeed, the Joint Committee considered the matter and tried to follow that route. However, as I shall explain in more detail shortly, there is no guarantee that a match to cord blood will work. The next stage would be bone marrow and, after that, other tissue.
Mr. Burrowes: Yes, but there is the important issue of consent. The Anthony Nolan Trust properly recognises informed consent. That happens in the case of bone marrow matches and is important. We are considering the most vulnerable children in terms of rights and providing proper protection for them. The House needs to ensure that we provide that protection.
The child has autonomous rights and it is important that we recognise them and ensure that they cannot be subjugated, however pressing the need, to the concerns and needs of the parents. We should apply that principle fully and vigorously.
Let us consider the practice in relation to saviour siblings and, more broadly, to pre-implantation genetic diagnosis and IVF treatment. One must acknowledge the difficulty of the process. I understand that it can take four cycles of IVF treatment to find the necessary match. As hon. Members know, in any one cycle of IVF treatment, around 12 eggs will be extracted. Of those, 10 will become embryos, eight will be biopsiable and it is possible to diagnose only seven. Two would be normal, with only one potentially described as good quality. Once that embryo has been implanted in the womb, the chance of it being carried to term is estimated at 15 or 20 per cent. That may not be of paramount concern for all hon. Members, but it is for some. Cycles of IVF treatment lead to many discarded embryos, both diseased and healthy. That causes some hon. Members concern, especially those who support amendment No. 4, which would prohibit saviour siblings. However, I appreciate that other Members have other concerns.
Some of those other concerns relate to the woman. As has been said in previous debates, there is a significant risk of ovarian hyperstimulation syndrome to the woman who undergoes the procedure. As the ovaries are stimulated to extract eggs, the ovulated ovaries release increased amounts of hormones into the abdominal cavity, causing it to become permeable. That raises concerns about the woman undergoing the procedure.
Dr. Evan Harris: Surely it is up to the woman. There is informed consent in those procedures. She may say that she wants a chance to save the affected siblings life and wants a child who can give that chance. She is prepared, as are all those who undergo IVF, to take the risks, which are not trivial, to have that child. The hon. Gentlemans comments apply to all IVF treatment and assume that people cannot give informed consent, which they do, in their thousands.
Mr. Burrowes: I made a point about the practical implications for women. I do not want to deny them a choice, but to draw attention to the practical risks involved in the procedure and emphasise that it is not easy to reach the point of finding a matched embryo to provide a saviour sibling.
Let me consider the safeguards that the Government want to establish to ascertain whether they satisfy many Members concerns about the principle of saviour siblings. In Committee in the other place on 3 December, umbilical cord blood stem cells, bone marrow or other tissue were discussed. When questioned about other tissue in November, Lord Darzi stated:
The Bill does not limit which tissue can be used in the treatment of a sibling... and the Human Tissue Authority must approve any transplants involving organs from living donors and children who are too young to give consent.[ Official Report, House of Lords, 21 November 2007; Vol. 696, c. 869.]
That raises questions about not only a matched saviour sibling for cord blood or even bone marrow, but how
other tissue can be properly defined and limited. The subsequent concern was that, if the embryo were found to be immune, it would be implanted deliberately to become a source of what those in the other place described as spare parts for an existing childits siblingeven when too young to give consent.
Since that time, the Government have amended the Bill to clarify that the reference to other tissue does not include any whole organ of the child. The Government have sought to provide that safeguard and make it clear that a decision to allow embryo testing on the basis of providing a future organ transplant for a sibling would not be allowed. I can see the Governments good faith in that. They want to extend that safeguard in respect of the saviour sibling becoming a whole organ donor.
Nevertheless, the Bill still contains a definition of other tissue. The matter has been debated and challenged in the other place. I understand from correspondence and debate that when reference was made to extending the safeguard and to defining other tissue as regenerative tissuemy hon. Friend the Member for Boston and Skegness (Mark Simmonds) will probably want to expand on thatthe Governments position was that other tissue certainly does not include whole organs.
Dr. Iddon: The regulator has so far allowed such treatment for only aplastic anaemia, Diamond Blackfan anaemia and beta thalassaemia. The regulator decides which conditions can be treated by the saviour sibling technology, which in turn determines which tissues can be taken. Would the hon. Gentleman agree with that?
Mr. Burrowes: That raises the question of whether we should extend the use of saviour siblings not only to life-threatening conditions, but to the wider threshold of serious illnesses. In time, their use may be extended to illnesses beyond those that the hon. Gentleman mentioned. That is why we must consider the safeguards carefully. However, I will deal with the process of regulation shortly.
Rather than removing the phrase other tissue, the Government wanted to encompass the whole matrix of umbilical cord blood, in respect of research suggesting that cells of the umbilical cord, rather than the cord blood, may offer potential for treatment. That is the Governments primary focus when using the phrase other tissue. However, one cannot be wholly satisfied with that response. In the debate in the other place, in response to Lord Alton of Liverpool, who was particularly concerned about the possibility of other tissue being extended to other regenerative tissue, such as part of a liver or a lung lobe, Baroness Royall of Blaisdon said:
With regard to parts of an organ, the Bill has been drafted in this way to allow the use of cells of the umbilical cord or, for example, if it were possible in the future to treat conditions with cells cultured from a small biopsy from the liver or any other organ.[ Official Report, House of Lords, 21 January 2008; Vol. 698, c. 23.]
The Governments position on defining other tissue, as well as including umbilical cord blood and bone marrow, is inclusive. It seeks to deal not only with the current circumstances, but future treatments that may follow. That raises profound questions. Those questions have been raised in correspondence between Lord Alton of Liverpool and Lord Darzi, in a letter dated 25 January, which not only questions the Governments position on other tissue in detail, but questions why, if the Government are focusing primarily on umbilical cords as the donation source, they are not minded to omit the word blood from between umbilical cord and stem cells, so that the Bill would read umbilical cord stem cells. Would that not be sufficient to capture stem cells from both the cord and cord blood? If not, would adding and cord to the existing wording, so that it read umbilical cord and cord blood stem cells, be sufficient?
I invite the Minister to respond to that. However, if she feels that that approach would not wholly incorporate both the cord matrix cells and a small biopsy of regenerative tissue, why are the Government not explicit in the definition of other tissue? The concern remains that other tissue as currently defined still raises the spectre of part organs being available for donation, whether regenerative or not. I say, not, because then we come to the regulatory role of the Human Tissue Authority after the child is born and the possibility that the courts could be involved too, in decisions relating to transplants of whole or part organs from children.
That spectre is raised because, as I intimated in my point of order, it is currently not within the remit of the Bill to deal with those details as they affect the Human Tissue Authority and its regulation. We are only one side of the coin, but the House does not have the opportunity to put into primary legislation its concerns about how far a saviour sibling could go in terms of donation. We all need to be aware that once the embryo is tissue typed, it has implanted an immune matched sibling for life and is known to have organs compatible with the older sibling, whether the initial reason related to tissue typing or not. That raises the danger that a saviour sibling could become a lifelong donor.
Dr. Evan Harris: There is a flaw in the hon. Gentlemans argument. What if there was a fortuitously matched sibling who was not tissue typed or selected? They would not be allowed to donate organs or parts of organs, because of criminal lawthe law of assaultand the rule that the best interests of the child must be maintained, and because the General Medical Council would take a strong view. What the hon. Gentleman describes is not going to happen in the vast majority of cases, so why does he think that special statutory protection is needed in this case?
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