My Lords, in rising to discuss the Bill, I first pay considerable tribute to the noble Lord, Lord Shinkwin, whose courageous approach to these matters is massively appreciated on all sides of the House, irrespective of the argument that we may have about the nature of termination of pregnancy in different circumstances. His tireless work on disability is of massive importance to our society, and I very much hope that he will continue that work—even though I disagree with some aspects of the Bill, to which my Amendment 1 refers.
I feel I need to correct a particular impression that the noble Lord gave in the Second Reading debate. Unfortunately, I could not be here; I was lecturing in the United States. Very far from the Bill being modest, reasonable or logical, there are all sorts of flaws which are not modest in their effects on women and their families and are not reasonable for women who are suffering with these hugely difficult decisions about what to do in their interests and the interests of their family—and I do not believe that the Bill is in any way logical. As noble Lords will see from the amendments I have put down, I do not intend to try to prevent the Bill going through, but it must at least be adjusted and, in one aspect, Amendment 1 does that.
One thing that concerns me about the Bill is that the noble Lord, Lord Shinkwin, talks about discrimination against people who have a disability. One problem here is that it is surprising that he has produced the Bill for termination of pregnancy where a minor number of babies are being aborted but has avoided a much bigger issue. For example, he has not discriminated against pre-implantation genetic diagnosis, which is going on worldwide in every in vitro fertilisation centre and is designed to screen out foetal defects where families suffer from those defects.
I have to explain to the House exactly what happens in that situation, because it is relevant to my amendment. There are some 6,000 to 6,500 severe foetal disorders of different kinds caused by mutations in DNA. It so happens that in the debates so far only two have been described, neither of which is fatal. Neither muscular dystrophy nor brittle bone disease is generally fatal, but most of the 6,000 diseases are fatal—they kill mostly children, and they kill them mostly at an early age, usually before the age of 2 or 3.
Noble Lords might say that we can screen DNA, and people have been talking about eugenic screening, but we cannot do that because, for example, even in
the case of muscular dystrophy, which was cited, at least one-third of those mutations occur de novo in families without any previous history, so they cannot be detected and families will not expect them to be there until the woman is pregnant. Added to that, in, for example, the case of muscular dystrophy, which affects mainly males, there are about 700 different mutations in the dystrophin gene which causes that disease. So this is a seriously complex situation which is being looked at in a rather simple and, as the noble Lord, Lord Shinkwin, said, modest way, in the legislation that he is proposing—but it is very far from that.
The other thing that very much concerns me in his words and language is the charge that we have become search and destroy. To the noble Lord, Lord Shinkwin, I say this: in my professional life, although I have been mainly involved with reproductive medicine, I have been a professional obstetrician and a fellow of the Royal College of Obstetricians and Gynaecologists. I have been involved with pregnant women and their families for more than 40 years, and I find it objectionable to consider that we undertake search and destroy during early pregnancy. What we try to do in pregnancy is what we should do as obstetricians, which is to diagnose and discuss. That is very different from search and destroy.
What we do with screening in pregnancy is to try to make certain that the foetus is healthy. If the foetus is not healthy in some way or suffers from an anomaly, what we can then do, having made that diagnosis, is discuss that at great length with the woman concerned—along with her husband where appropriate and if necessary with her family—and then decide with her what is in the best interests of the family. Hopefully, that pregnancy will continue whether the foetus is disabled or not, but knowledge of the disability means that we can have appropriate medical resources available at the time of birth. This is far from destroy: on the contrary, it is in fact designed to protect, promote and enhance life wherever possible. That is a basic issue that we have dealt with.
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The third thing that concerns me very much, which has been mentioned again and again, is the word that has been bandied around the Chamber by different speakers in different contexts throughout the Bill. The word “eugenics” is constantly being mentioned, which I resent. I have to say to the noble Lord that I fear that it is rather unfortunate to talk about the “eugenicists” in the Department of Health. It is not for me to say how inefficient the officials in the department are—and I have had many quarrels with the Department of Health—but I do not believe that their motives for doing what they do is in some way reprehensible. It is a misunderstanding of our ethical principles in these individual cases to talk about eugenics.
We have five ethical principles in medicine. The first is respect for the autonomy of the person in front of you. For example, if somebody comes to me requesting a termination of pregnancy, as an Orthodox Jew I might not want to do that termination because it might be against my religion—and I suspect that that would be true for many Catholics as well. My autonomy
is involved in the decision as well, and it has to be respected. But as a medical practitioner I have to respect the autonomy of that individual and make certain that if I cannot do the termination of pregnancy, or cannot treat that patient, I put the patient in touch with another medical practitioner or another group of people who can give advice and have a considered discussion about how the woman should handle that.
That autonomy is critical, and of course eugenics is not talking about the autonomy of the individual. The eugenicists to whom the noble Lord, Lord Shinkwin, referred to were the eugenicists in Nazi Germany—if I may say so, a very unfortunate reference. They were, perhaps, bizarrely altruistic in that they believed that by promoting survival of the fittest, they were protecting the interests of their society—but that was a fundamental flaw in their ethics. In protecting their society, they forgot the key issue of respecting the autonomy of the individuals who would be affected by the dreadful SS doctors, of whom there were many. That is something which we have to understand. It is a basic issue. Again and again, when people have these dreadful decisions to make, we have to decide what is in their interests and consider their autonomy. We have to give them correct information and be unbiased. We therefore have to be very careful about how this is promoted in legislation, because there is a risk of damaging that autonomy.
There are of course other issues, one of which is that, under the second ethical principle, we doctors try to be beneficent: we try to do good wherever we can. That makes for very difficult decisions, because sometimes you have a tussle between the foetus, who cannot give consent, and the woman, who can give consent, after she has been given information. That may be difficult, but in British law as I understand it—the noble and learned Lord, Lord Mackay, may have something to say about this—the key person we protect is the pregnant woman, because she is a live, existing and fully grown human outside the womb. She therefore carries some precedence, in British law, over a baby as yet unborn—although perhaps the noble and learned Lord may have a different view on that.
The third issue is that we do not act maleficently when we treat patients. We try to do good. It is very difficult, but we have to balance good and evil, and that certainly applies if you do a termination of pregnancy. I do not believe that I have ever seen a woman who has gone through a termination of pregnancy, or considered one, without a massive amount of soul searching. It is very important that we understand that; it is not a simple decision for any family to abort a pregnancy.
Next comes the issue of justice. As doctors, we are called on increasingly to make very difficult decisions, and we have to understand the justice of those decisions. That is not easy.
Lastly, we have to understand the normative values of our society. I say to the noble Lord, Lord Shinkwin, that it is clear what the normative values of our society are: whether we like it or not, whatever our religious position might be, the fact is that we accept termination of pregnancy and I believe that most people in our society have the normative consideration that it is reasonable, in cases where a foetus is severely damaged and unlikely to survive or is going to be extremely ill and in great pain, to terminate that pregnancy.
I shall try to put those issues in place. I do not believe that the womb has become, as the noble Lord says, a more dangerous place; on the contrary, the research that we do at the Genesis Research Trust, a charity set up to protect women’s health that I have the great privilege to be chairman of, tries to avoid the womb being a dangerous place; we are trying to do everything we can to improve the prospects for women.
I shall tell the House briefly about a particular case that is absolutely relevant to the Bill: the case of Peter. His mother had three unexpected miscarriages and then could not get pregnant for a while. Eventually she had a fourth miscarriage but then she gave birth to a male baby called Peter. Peter was obviously not particularly well. He survived birth but did not move normally. He had muscular contractions all the time and was developing very abnormally. Moreover, it was clear that his development and his cognitive ability were well below what we would expect. At a very young age he was already starting to bang his head against the wall. He was trying to mutilate himself and increasingly his self-mutilation and jerking movements carried on all night and during the day. His mother and father faced a dreadful situation. Their marriage broke up purely, I think, as a result of the damage that they were seeing.
It turned out that the boy had a very rare disease called Lesch-Nyhan syndrome. You cannot screen for it because every mutation in every family is different, so the only way it can be diagnosed is actually when there is a male baby in the womb already. Over the next period of time the mother refused to have a termination of pregnancy because she wanted another child, but she continued to have more miscarriages. By the time she had her ninth pregnancy, though, she was distraught and she had terminations of male pregnancies. Eventually, pre-implantation genetic diagnosis was able to take an embryo from that lady and, after about two years’ research, we were able to find the mutation in it and replace it in the uterus, and she had a normal male child. To my mind, that is not discriminatory or eugenic; it is doing what we should be doing in medicine, which is trying to help people who have these appalling conditions.
To make it very clear, I should tell noble Lords that Peter was strapped to a wheelchair; he was not allowed to move because if he did, he mutilated himself. He tried to throw himself down the stairs. All his teeth were extracted because he bit off his lips and his tongue, and he was getting oral infections that would have been fatal. His mother did everything to try to protect him, but eventually she came to the decision that she needed to discriminate, if you like, between embryos—and that, to my mind, was an ethical decision.
The amendment I am moving is very simple. There are a number of women who have massively deformed foetuses that result in death, perhaps not during pregnancy but at the end of pregnancy or within the first week afterwards. Many of those women need to have a caesarean section as you cannot do a vaginal delivery in such cases because you cannot deliver the baby through the birth canal. The Bill might make such women go through pregnancy to term, have a delivery that has to be operative and then watch that baby die shortly afterwards. To my mind, that is totally inhumane. For that reason, I feel that the amendment is a vital minor adjustment to the Bill at this stage.