| Previous Section | Back to Table of Contents | Lords Hansard Home Page |
When embryo testing is carried out, a single cell or two cells are removed from embryos at the eight-cell stage. These cells are then tested and the embryo continues to develop. It is, of course, essential that embryologists should be able to practise the micromanipulation technique used in this process.
Further provisions in the Bill also ensure that embryos can be used for this purpose only where proper consent has been obtained from the people whose gametes were used to create the embryo and where the proposed use of embryos is necessary for that purpose. In practice, it is unlikely that a large number of embryos will be used in this way because only those embryos that are not suitable for treatment or storage will be used for this purpose. However, it is important that people should be able, if they so wish, to donate to the training of embryologists in order to benefit future patients those embryos that they do not require for their own treatment.
We are aware of other embryological techniques for which embryologists may wish to use embryos to practise. For example, there is vitrification, which is a technique for storage that requires a very precise process, as explained by the noble Baroness. Additionally, new techniques may be developed in the future that it would be beneficial for embryologists to practise. Training is of the utmost importance. To ensure that embryologists may be trained in techniques other than those associated with embryo testing, and for the sake of future-proofing
4 Dec 2007 : Column 1644
In response to the noble Lord, Lord Alton, on long-term research, the HFEA has a scientific and clinical advances group that monitors research, including safety studies in storage. I trust that the noble Baroness will feel able to withdraw the amendment.
Baroness Tonge: I will comment just a little further. I accept the dilemma about which part of the Bill the amendment should fit into. Frankly, only the Bill team can decide that; I do not have the expertise to insist that it should go in one part of the Bill or the other.
The noble Lords, Lord Winston and Lord Patel, spoke very confidently about the training being absolutely fine and everything being wonderful.
Baroness Tonge: That is how it came over. I would have said that a little humility was needed, in that training is never 100 per cent. We can never have enough training. There are seven centres where this takes place, which is not very many. I assure noble Lords that the backing for the amendment has come from many professionals; it is not just from the Liberal Democrat Benches, obviously.
Lord Patel: I thought that there were six centres, but there might be seven. That refers to the training related to biopsy for pre-implantation genetic diagnosis. That requires training and it is necessary. The other aspects of training that I think are routine, good, clinical practice training should be allowable without having to be put in the Bill.
Baroness Tonge: I have been through the mill of medical training, and I am sure that it is not like this now, but in my day many consultants and professors thought that the training and education that they gave us were absolutely wonderful and beyond reproach, when actually the students and the junior doctors did not share their view and would have liked much better training. I plead with noble Lords to retain a bit of humility and to look at this in the spirit in which it was intended—to broaden and deepen the training that people can acquire in these techniques.
Having had the assurance from the Minister that the Bill team and the department will look at the amendment, I beg leave to withdraw it at this stage.
Amendment, by leave, withdrawn.
Baroness Tonge moved Amendment No. 29:
4 Dec 2007 : Column 1645
The noble Baroness said: I hope that this is a much briefer subject. It is another probing amendment, and I do not speak in any sort of dogmatic way. In embryo testing and sex selection, we feel that “abnormality” in these clauses is too restrictive. My understanding—and I have no experience of this—is that the characteristics of some cells, including genetic features, would occur in an otherwise healthy individual. Such a characteristic might lead to a serious risk of physical and mental disability. The example that I was given was of the apoprotein, which, if carried, gives an individual or even a family a higher risk of dementia or Alzheimer’s disease.
The amendment is asking for information and for the Bill team to look at this carefully and ensure that, by using “abnormality”, we are not excluding characteristics that might lead to disease, even though things are not abnormal at the time. This is a difficult distinction and may be semantics to some people, but it is worth looking at and I would like the Minister and the team to comment on it. I beg to move.
5.30 pm
Lord Alton of Liverpool: I hope that we will think carefully before making this change. I am certain that it is not the intention of the noble Baroness or that of her noble friend who tabled the amendment to widen this debate to the area of characteristic selection, but I worry that if we change the words in the Bill, that is how it could be misrepresented outside your Lordships’ House. I am glad that the Bill unequivocally prohibits sex selection. We are absolutely right to do that. We have to guard against the mentality that can sometimes lead to wanting designer babies.
A very good new book, Everything Conceivable: How Assisted Reproduction is Changing Men, Women and the World, which the Librarian in your Lordships’ House made available to me, has just been published in America. Interestingly, it was written by a feminist, and I would not necessarily share all her conclusions; but she says that what she calls “yuppie eugenics” can lead to all sorts of pressures when people are tested. I fully accept that this is more likely to happen in the United States than here, but we should always guard against these things. In the book, she says, for instance, that one couple argue about what height their egg donor should be. Another provides a score list, based on looks, education, IQ and sporting interest. Clearly, those are not abnormalities but are characteristics. I hope that the Minister will tell us whether, if we were to change the words in the Bill, it might be open to that interpretation.
Baroness O'Cathain: I am really concerned about this, because leaving out “abnormality” and inserting “characteristic” opens up a wide area. Characteristics of human beings include colour of the eyes, mental ability, physical ability, or whether they are tall, small, white or whatever. These are all characteristics. This amendment would create designer babies; nothing more, nothing less. We really have to avoid this. What are we doing? We are trying to play God once more. I hope that we are not going down that way.
4 Dec 2007 : Column 1646
Lord Walton of Detchant: My noble friend Lord Alton must be surprised to hear that on this occasion I agree with him, because he is right in saying that “characteristic” is too broad. The noble Baroness, Lady Tonge, can be reassured that a mutant gene that might predispose to the development of Alzheimer’s or any other disease could readily be called an abnormality. In that case, it is perfectly appropriate to leave the wording of the Bill as it is.
Baroness Royall of Blaisdon: Embryo testing involves removing one or two cells of an embryo created in vitro at the eight-cell stage. The Bill introduces five principal purposes for which embryos can be tested. These are: to determine whether the embryo has a genetic, normally chromosomal, abnormality that would affect its ability to result in a pregnancy; to determine whether the embryo has inherited a gene or genes from one or both parents that will mean that any resulting child will have or develop a serious medical condition—this is pre-implantation genetic diagnosis, and is what the amendments tabled by the noble Baroness relate to—to determine the sex of the embryo where there is a particular risk that any resulting child will have or develop a gender-related serious medical condition; to determine the tissue type of the embryo where there is an older sibling with a serious medical condition that could be treated with umbilical cord blood, bone marrow or other tissue of the resulting child; and finally, in the event that there is uncertainty as to whose gametes were used to create the embryo.
The purpose to which the amendments in this group relate is in new paragraph 1ZA(1)(b). This allows embryo testing where there is an inherited condition in one or both parents that could be passed on to any resulting child. A further provision relates to this. New paragraph 1ZA(2) specifies the criteria that must be met in relation to the risk of the condition for which the embryo is being tested—for example, that it must be a significant risk that a person with the abnormality would have or develop a serious condition, disability or illness.
The Bill is drafted to describe the genetic alteration that would result in the medical condition as an “abnormality”. Amendments Nos. 29 to 31 and 36 to 38 change “abnormality” to “characteristic” every time it is mentioned. The effect would primarily be a drafting alteration. The same tests would have to be met, regardless of how the trait that causes any given condition is described. “Characteristic”, in the description of the purpose, would not necessarily indicate that there would be something medically wrong with anyone born with such a characteristic. It could be argued that “abnormality” might indicate that. However, new paragraph 1ZA(2) ensures that however the trait is described, embryo testing could be carried out only where the trait gives rise to a significant risk of a person having or developing a serious medical condition.
We appreciate that there may be concerns about the use of “abnormality” in this context—although I note also the concerns of other noble Lords in relation to “characteristic”. There are many different variations of genes and we all have slightly different versions. Some changes will have very little effect, whereas others will result in a serious medical condition. Because
4 Dec 2007 : Column 1647
The word proposed by the noble Baroness would not have the same issue associated with it as “abnormality”. It also still ensures that embryo testing for the purpose specified in new paragraph 1ZA(1)(b) could be carried out only where there was a significant risk that the genetic alteration—or characteristic—would result in a serious medical condition being present or developing in any child born as a result of treatment. Therefore, we will agree to consider further the amendments tabled.
Amendment No. 38A also relates to embryo testing where the embryo is at particular risk of inheriting a condition that could result in a medical condition—perhaps when the parents both have a faulty copy of the cystic fibrosis gene. The amendment relates to new paragraph 1ZA(1)(b) of Schedule 2 to the 1990 Act, and new paragraph 1ZA(2) specifies the criteria that must be met in relation to the risk of the condition for which the embryo is being tested—that there must be a significant risk of the child that results having or developing a serious condition, disability or illness. The amendment inserts “may” into this paragraph.
Some conditions that it might be desirable to test for are not fully penetrant. This means that if you inherit the abnormality or characteristic, you will not always develop the condition. Instead, you inherit an increased susceptibility to the condition. This is the case for some types of cancers that can be inherited—for example, some forms of breast and bowel cancer. The Bill would allow for conditions that are not fully penetrant to be tested for, subject to licence by the HFEA. To paraphrase, the Bill states that the inheritable abnormality must result in a significant risk that the condition which it causes is present or developing in the person born as a result of testing. Therefore, if the particular abnormality resulted in a serious condition in nine out of 10 people with that condition, this could be considered a significant risk. Amendment No. 38A would not necessarily open the scope for the authority to license more conditions, as there would still have to be a significant risk that the condition may develop. The amendment could add a level of uncertainty, which would not be desirable.
The noble Lord, Lord Alton, asked whether “characteristic” would include sporting ability. The answer is no—a characteristic would still need to satisfy the criteria leading to a serious medical condition. The noble Baroness, Lady Tonge, asked whether testing for apoprotein would be allowed. We note the comments on conditions caused by apoprotein and will look at this further in the context of the Bill.
I note the views expressed from all sides in this debate, specifically in relation to characteristics, and I am very glad that the amendment has brought together
4 Dec 2007 : Column 1648
The Lord Bishop of Winchester: It seemed that the line of the noble Baroness’s answer precisely did not draw together various corners of this Chamber. The more she spoke and the more she dealt with “may”, she increasingly edged away from the unity of view of the noble Lords, Lord Alton and Lord Walton, and towards the noble Baroness, Lady Tonge. I think that we need to know whether that is her position or whether she is as clear as the noble Lords, Lord Alton and Lord Walton, that this proposal is too permissive by three-quarters.
Baroness Royall of Blaisdon: We said that we would be prepared to look further at Amendments Nos. 29 to 31 and 36 to 38, but made it absolutely clear that Amendment No. 38A would add undesirable uncertainty. However, we have agreed to look at this matter further and will take into consideration the very strong views expressed in all parts of the Committee, so the right reverend Prelate should feel reassured that we will not do anything about which he would feel desperately uneasy.
Baroness Tonge: When I was first asked to move this amendment, my reaction was exactly that of the noble Lords, Lord Walton and Lord Alton, and the noble Baroness, Lady O’Cathain. Nevertheless, I thought that the Minister gave an excellent response. She clearly accepted all our concerns about children being selected for sporting ability, blue eyes or whatever. Obviously, that would be absolutely horrific and we do not want to go down that road. However, there is a point to be made here: some conditions may not be included in “abnormality”. None the less, I am entirely satisfied with the Minister’s response—it shows that the department has given a great deal of thought to this matter. I am grateful for that and am therefore happy to beg leave to withdraw the amendment.
Amendment, by leave, withdrawn.
[Amendments Nos. 30 and 31 not moved.]
5.45 pm
Lord Alton of Liverpool moved Amendment No. 32:
The noble Lord said: There is a typographical error in Amendment No. 39. It says “Page 56, line 3” but should read “Page 56, line 30”.
The cumulative effect of Amendments Nos. 32, 32A, 33, 34, 39, 40 and 41 would be to block tissue typing for the purposes of selecting an embryo that is an immune match to an existing child, to prevent children being used for organ donation after tissue typing for any purpose, to prevent the law being extended to allow children to be created to be organ and tissue donors, to limit the circumstances in which the creation of children as organ donors can take place, and to make the creation of children as organ donors a procedure of last resort.
4 Dec 2007 : Column 1649
I was struck by the prescience and acuity of a comment in the 25 August edition of New Scientist. It is worth listening to an extract from the article in question:
“It is excellent news that parents in the UK will probably be allowed to have sibling saviours to save children with ‘serious’ rather than merely life-threatening diseases ... Perhaps legislators should now seize the opportunity not only to permit this far-sighted approach, but also to solve the donor organ crisis.
It should be possible to ensure that all children born to a couple are immunologically compatible so that, were one of the family to suffer a catastrophic organ failure, siblings would be on hand to provide another. Naturally, the elected saviour sibling would be required to provide the organ, although since the issue of consent does not arise with saviours at present, there is no need to suppose that this will be a problem in the future.
The scheme would, of course, work best for kidneys, as the saviours could rely on their spare to see them through; half a liver could also be donated without too much worry. A heart and/or lungs would be trickier, but it does not stretch the imagination to suppose that our brave scientists and legislators will be able to see a way around this inconvenience”.
Let us first dispose of the casuistry that saviour siblings are donors. There is clearly something of a contradiction in using the word “donor”, as a donor has to give consent, and that is manifestly impossible in what is proposed. Personal organ donation is often a generous and altruistic act, and many Members of your Lordships’ House will carry donor cards, but it is always an act freely entered into. It is an act of autonomy and personal choice but clearly a baby or a young child does not have any say in this momentous decision. Furthermore, reducing the present hurdle for permitting such an extraordinary presumption from “life-threatening” to “serious” conditions—which, as we know in another context, may mean a cleft palate or webbed fingers—should not be allowed to happen without deep and fundamental debate.
The Bill proposes that an embryo can be tested to see whether it is an immune match for an existing sibling if the existing child suffers from a serious medical condition which can be treated by,
On 21 November, I asked the noble Lord, Lord Darzi, what the words “or other tissue” meant. He left the House in no doubt that it included organs, including organs from non-consenting children who are too young to give consent. He 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, 21/11/07; col. 869.]
Therefore, if the embryo is found to be an immune match, it will be implanted deliberately to become a source of spare parts for an existing child—its sibling—even when it is too young to give consent.
My Amendment No. 32 goes to the heart of this matter. Many of your Lordships may not be too unhappy about permitting a child to be created to provide tissue from the umbilical cord, but the difficulty is that, once an embryo is tissue-typed and is known to be an immune match for an existing child, it will be available to provide any tissue or organ after birth, even if ostensibly it had been created only to
4 Dec 2007 : Column 1650
Amendment No. 32A deals with the issue of life-threatening conditions. The Bill proposes that a saviour sibling can be created to provide tissue and organs for diseases in an existing child that are not even life-threatening but merely serious. When the Minister was asked why the Government have changed the criterion from “life-threatening” to “serious”, he replied:
“The pre-legislative scrutiny committee recommended that the Bill should not be limited to life-threatening conditions but should also include serious conditions”.—[Official Report, 21/11/07; col. 869.]
As I said at Second Reading, autism has already been suggested by the chairman of the Joint Committee scrutinising the Bill as one of the disorders for which a saviour sibling could be treated to provide tissue. In an interview with the Daily Telegraph, he said that saviour siblings cannot currently be used to help children with autism but it was an example of the kind of serious condition that the committee believed should be tackled by the technique. It is hard to see what kind of tissue could help to overcome autism. However, if a child could be created to help with autism in an existing child, what else could be classified as serious? That is why I am proposing Amendment No. 32A.
| Next Section | Back to Table of Contents | Lords Hansard Home Page |