Select Committee on Science and Technology Minutes of Evidence


Examination of Witnesses (Questions 844 - 859)

WEDNESDAY 27 OCTOBER 2004

PROFESSOR KENYON MASON, PROFESSOR MARGARET BRAZIER, MS SARAH ELLISTON AND MR JAMES LAWFORD DAVIES

  Dr Turner: Good morning, ladies and gentlemen. It is not often that this Committee, which is exclusively made up of non-lawyers, has the pleasure of interviewing a panel of lawyers.

  Dr Harris: For free.

  Q844  Dr Turner: There is nothing MPs love more than having a go at lawyers! However, to the subject in question: you presumably, looking at your origins, have slightly different takes on this issue. Some of you are coming from the point of view of legal practitioners and others are academic lawyers. Since we are slightly short of time, rather than asking you to give introductions, we will go straight into questions, if you will forgive me, but, since you will clearly have different points of view, I am quite happy to take different answers to the questions. Whichever of you feels a desperate need to contribute in answer to a question, please feel free to do so within the limits of time. We have to finish in an hour. Could I begin with the HFE Act, which has been the subject of a number of legal challenges. Why do you think this is and does it worry you?

  Professor Mason: It is subject to challenge because things change.

  Q845  Dr Turner: Not because of lawyers.

  Professor Mason: Of course I am not a lawyer but things change which you may not know about. You can think of all sorts of things which suddenly come about which you have not thought about and of course reactions are going to alter according to what we know. I think the beauty about the HFEA is that it is something that can in actual fact move with the times. It does not require statutory change or parliamentary activity and so on and so forth to make a change; it can make a change of itself. To that extent, I think the HFEA is very important and very useful. The trouble is, as has been talked about in the evidence before, every now and again does it in fact override or go past what one meant—and that is where the trouble comes, of course.

  Professor Brazier: I think I would agree with that. The pace of scientific change in the last ten years has been extraordinary. In a sense, of course, the 1990 act was somewhere out of date when it was passed. It took six years from the Warnock Committee to the 1990 act and quite a lot had changed, and, with the greatest of respect, I am not sure Parliament really appreciated those changes. There was also, I think, a difficulty that the 1990 act is a compromise. The debate in Parliament focused very much on pro or anti embryo research in a fairly simplistic sort of way, and therefore fundamental philosophical questions that we knew about in 1990 were not necessarily fully addressed. The paradox is, of course, that compromise has its advantage. We were able to regulate fertility treatment in 1990 in a relatively liberal manner, at a time when many of our European partners either could not regulate at all, and we did see in certain European countries the sort of abuses that were discussed in the previous session, or else they regulated fertility treatment in such a very rigid way, as perhaps used to be the case in Germany, that the scientific developments that we have seen here simply could not be pursued in those states. Compromise was both good and bad but it adds to the need to review the act at this time.

  Q846  Dr Turner: You are absolutely right about the scientific literacy of Parliament. We are trying to improve it, but it is an uphill struggle. There have been occasions—and you referred to them obliquely, Professor Mason—when the HFEA has been accused of going outside the scope of its remit from Parliament in making decisions, such as on saviour siblings, which should properly have been the prerogative of Parliament. What mechanisms do you think Parliament should employ to correct that?

  Professor Brazier: I think the review in which you are engaged at this present moment is a way of addressing that. I am not absolutely convinced myself that it is somewhat that needs to be corrected. It is also important—though it is tremendously difficult, and if you asked me to do it, I would have to say "pass"—to see, as you review the legislation, if it is possible to draft legislation that does set the parameters that the elected representatives think ought to be set and does not absolutely stultify progress altogether. I think there are a number of other sorts of issues where some people would say, "Yes, the HFEA extended the parameters of its proper jurisdiction" but you might not, and of course whether or not you think the HFEA has gone outside its jurisdiction does rather depend at the end of the day about whether you think their actual decision was right or wrong. I do not think there are very many people who support the HFEA's decisions on saviour siblings who think that they overstep the boundaries of what they should properly do, but there are lots of people who think they are the wrong decisions—and of course it was a rather incoherent series of decisions—and they would then say, "Ah, it should be for Parliament."

  Q847  Dr Turner: Do you think there are any lessons Parliament can learn when it does review the legislation from its first attempt in 1990- with the HFE Act.

  Mr Lawford Davies: I think it is worth noting—and this is really in response to the three questions you have asked so far—that if you look at the challenges that have been made to the legislation, and indeed to the decisions made by the HFEA, with one small exception they have all been unsuccessful. Every challenge to the HFEA's interpretation to the 1990 act has failed in court. The act has really stood the test of time very well. Probably the best example of that is the House of Lords analysis of the cloning technique that was considered in the Bruno Quintavelle case. That showed that a technique which had not even been considered at the time that the act was first drafted really could be read into the legislation because of the way in which statutory interpretation rules apply in this country.

  Q848  Bob Spink: The Human Rights Act has technical constitutional primacy of the HFE Act though it may not have moral or popular primacy over the act. I want to address that area. First of all, the Human Rights Act establishes a right to found a family. Would it be better had that been turned round, so that the act actually prevented a potential abuse of couples with sterilisation, rather than giving a right to found a family?

  Ms Elliston: So far it has not been interpreted as being a positive right to assistance to found a family. It is very much interpreted so far—by the cases that we have had both at UK and European level—as being a negative liberty: very much the right to be left alone to found a family. That of course does bring in the question of the extent to which any regulation like the HFE Act, which encroaches upon people's private decision-making, actually might be in breach of such rights. So far the cases that we have had do not demonstrate that there is an unlimited ability to access reproductive technology, but so far there has been an ability for the UK to place limits—and I think that has been upheld by the courts—but it is a question whether, if we retain that legislation, we have to be open to more challenges in the future.

  Q849  Bob Spink: How do we proceed where there is conflict between the HFE and the Human Rights Act? Do we seek to change the HFE to comply with the definitions? People seem to be broadening those definitions anyway all the time under the Convention for the Protection of Human Rights. Or do we seek to change our constitutional position that this country has with regard to the Human Rights Act? Which do you think would be the best way forward?

  Mr Lawford Davies: When Human Rights arguments have been made in relation to the 1990 act, they have failed. The Natallie Evans case, about a lady who has embryos in storage and wants to use them despite her partner's withdrawal of consent, considered Article 2, Article 8, Article 12, Article 14, and all of her challenges on those bases failed. Certainly under Human Rights scrutiny, shall we say, the act has stood up very well. I do not foresee an immediate problem in relation to the convention.

  Q850  Bob Spink: Is the HFE Act restriction on the provision of assisted reproductive services a breach of the convention rights, in your opinion?

  Professor Mason: I think the very real problem is that there is too much in this act that is not in the act but is in the code of practice. I feel many of these problems that are coming out, such as whether or not we should consider the status of the family into which the child is going to be born, are matters that are not actually in the act but in the code of practice. My main worry about the act at the moment is that we have got into the situation where so many of these decisions are being made by individual clinics—and they are individual private clinics, not even under the control of the national Health Service—which can only lead, I think, to "shopping around" for different opinions and so on, whereas we ought to be considering (a) how much of this is overdone and (b) how much should actually be put into the act rather than left in the code of practice.

  Q851  Bob Spink: They are very wise words, Professor. Do you think that bodies like the HFEA should be deciding how we proceed on matters as technology changes so quickly? Or do you think that Parliament should be considering these very important matters on behalf of society as a whole?—and changing the law, in other words.

  Professor Mason: Would it be possible for Parliament to do so? Would it in actual fact have the time to do so? Would its protocols and so on allow things to be done fairly rapidly? As I say, I think the one beauty about something like the HFEA is that you can make changes fairly rapidly. For my own view, I think that the great deal of thrust really ought to be by parliamentary decisions, if it could be done; but it would be a matter of parliamentary technique rather than anything else.

  Professor Brazier: I think part of the trouble is that the sorts of scientific developments we have seen are incremental. It would be entirely impossible for Parliament to intervene at every possible stage. If you take pre-implantation genetic diagnosis in saviour siblings, it is highly controversial. If you look at how that process has developed between 1990 and now—the ability to screen for embryos with, say, serious genetic diseases and moving on to what they can do now—it is very difficult, even with hindsight, to identify a particular time and think, "Ah, that is the boundary that never should have been crossed." I would agree with Professor Mason: there would be so many scientific developments that Parliament would be overwhelmed. I think what the act did seek to do, particularly in relation to embryo research, was to set out a series of purposes for which Parliament in 1990 considered that research was warranted, and then to create a provision for secondary legislation to be used if those provisions were to be extended—as they have been with stem cell therapies—and those sorts of provisions give Parliament the opportunity to intervene without the necessity for primary legislation. I would imagine, if there is to be new primary legislation, we would not wish to see yet further primary legislation for another couple of decades simply because of the pressure of other business upon Parliament.

  Q852  Geraldine Smith: The EU Charter of fundamental rights demands "the prohibition of eugenic practices, in particular those aiming at the selection of persons". What implications do you think this has for the UK?

  Mr Lawford Davies: I think it does present a real issue. On a very basic interpretation of the term "eugenic" being something which improves humanity, usually through some sort of genetic screening, then pre-implantation genetic diagnosis is quite literally eugenic in its nature. I know that the Charter is said to be non-negotiable and I know that the Prime Minister is supposed to be ratifying it this week, and quite how eugenic will be interpreted by the courts, if and when it comes to that, I do not know. Certainly some of the public interest groups have expressed their intention to challenge what is allowed at the moment under Article 3 (which is what you quoted) and I think it remains to be seen how the wording in the Charter is interpreted.

  Ms Elliston: I think that is absolutely crucial because the implication for that might well be that if that is taken on a very strict interpretation we would no longer be able to screen for embryos where there is a sex-linked disorder, which is currently permitted, of course. If that is taken as being selection for eugenic purposes, that practice might be expressively prohibited under that article.

  Mr Lawford Davies: Yes, it would work either way. You could be screening in or screening out, it would still appear to fall within the wording of the article.

  Q853  Geraldine Smith: Is antenatal screening and testing for foetal abnormalities a eugenic practice?

  Professor Brazier: I think it depends entirely, as my colleagues have said, what constitutes eugenic. Yes, at one extreme interpretation of the word, any form of antenatal screening which was intended to screen out, shall we say, a male foetus that was likely to suffer from haemophilia would be considered to be eugenic. Yes, I would be astonished, really, if any of our European neighbours actually intended that particular outcome as a result of the European Charter.

  Q854  Geraldine Smith: At what point does it become eugenic?

  Professor Mason: Is there not a difference between eugenics and family planning. Is that not your critical moment? If you are making a decision within your family, then this is quite distinct, say, from making a general policy announcement of what we should do. In my view, I think a family has every entitlement to try to make its family as it wants to, as good a family as it possibly can. That is a very different matter from saying we will have a policy whereby we will screen out.

  Q855  Geraldine Smith: The other extreme is that you have no children born with any sort of disability because they have all been screened out, and pressure could be put on families not to go ahead with the pregnancy if there were children with all sorts of perhaps minor difficulties. Where do you draw the line? Where does it become eugenics, where you are looking for the prefect society, the perfect people?

  Professor Mason: I am not looking for the perfect society if I am making my personal decision. I am looking for what in my view is my "perfect family". That I do not see as being the same problem.

  Professor Brazier: I think you made a very crucial point when you said if pressure were to be put on women/couples to use antenatal screening in order to terminate pregnancies where there might be disability. I think there is an enormous number of questions quite outside the Human Fertilisation and Embryology Act about the provision of antenatal screening, about the difficultly I think that many women have who might want to take advantage of antenatal screening but who would have no intention of terminating their pregnancy but knowing that there is hereditary disease in their family they might want access to screening because some knowledge of what awaits them would assist them to prepare for the baby who is to come and to assist them to integrate the baby into the family and give her the best possible quality of life, but there is undoubtedly, I regret, Dr Harris, anecdotal evidence that in certain centres it is very difficult to access screening unless you more or less say in advance you are accessing it in order to make a choice to terminate. So, I would agree with Professor Mason. Any form of government pressure, be it by legislation or policy guidance or a failure perhaps to control things that are done by those delivering the screening, would be eugenic in Professor Mason's sense.

  Q856  Dr Harris: You mentioned me and I am just wondering whether you recognise the difficulty in antenatal screening therefore that if you do a test that has risks it has to make a difference to the management. If someone says, "I want to have this test just for the hell of it, the result is not going to influence my behaviour," then it may not be appropriate/ethical for the patient and foetus to be subjected to the risk of a procedure. Is that not different from saying that you must have a termination if it is positive? Is that the point you were making?

  Professor Brazier: No. I entirely agree with you but I actually find it very difficult to imagine anybody wanting to have such tests like amniocentesis just for the hell of it but I can very well imagine that a woman who suspects there may be something wrong with the child might want some prior knowledge of the child's condition before giving birth. If I take my own personal ethical position, which is not one I would wish to see embodied in law, it suggests I should never have terminated a pregnancy. Whether, if I had faced that difficult decision I would have abided by my own religious and personal values or fallen short of them, I cannot possibly say. But if I had reason to suspect that I might be carrying a child with some serious disease, I think I would have given serious consideration to testing in order to know whether or not I was because there would have been a whole host of choices I would have needed to make. I would have had to decide, would it be feasible to go back to work? Or if I were to have this child and offer him or her the best quality of care, would I have to resign my job? What kind of arrangements would I have to make for the care of the child?

  Q857  Geraldine Smith: As testing and screening becomes much more advanced, and it may well become much more the norm, and you can test for all sorts of disabilities and defects, where do you stop? Where do you end up? Where the vast majority of people are not having children with any sort of physical defect, you would end up with this society, in which I do not think I would like to live, where everybody is near perfect.

  Professor Brazier: It is not an area in which I have an expertise, so I do not know the extent of take-up of the more unusual tests. It is also very important to remember that it is still the case, I think, that the majority of babies who are born with some form of serious disability are born with disabilities that would not be picked up by screening at the moment.

  Q858  Geraldine Smith: At the moment.

  Professor Brazier: Well, they are born as a result of something that happens in the course of delivery and childbirth. And then, of course, we still have a whole host of diseases that overtake children and, indeed, adults and older people later in life, that necessarily lead to disability. I think the focus simply on disability that arises antenatally is a relatively limited focus. I think there is a difficulty that ht more there is a perception that disability can be screened out altogether the more it will be that society finds it difficult to cope with disability when it does arise.

  Dr Turner: I think we had better move on. We have explored that fairly thoroughly.

  Q859  Dr Iddon: There is huge pressure to legislate at an international level. The United Nations are under huge pressure particularly in the area of cloning. What effect would a United Nations resolution to ban therapeutic cloning as part of the international convention against the reproductive cloning of human beings have on our legislation in the UK?

  Professor Mason: My own view is that we really ought to be going to the United Nations to decide particularly what this organism is that we are producing by cell nuclear replication. What is this organism and what are the rights of the organism? I really do think we are in a very worrying state here about the status of this organism. Different jurisdictions are going to take different opinions as to what the status is. This is something that ought to be, as I have put in my notes, at United Nations' level and not really at national level, particularly as to the status of the embryo that is produced by cell nuclear replacement.


 
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