I am very grateful to my noble and learned friend for that.
I want to do something which I have done previously in debates of this kind, which is to talk from personal experience. I may be one of the few people in the House who have sat with an endless number of parents who have a genetic disease in the family, have listened to their problems and have seen the kind of dilemma that they face. I am reminded of the child Jeremy “Martinez”—forgive me if I change the surname, but I do not have approval to give the surname of that patient from some time ago. We were doing in vitro fertilisation and pre-implantation genetic diagnosis in the 1980s, and the first babies, who are now 25, were born in 1990. At that time, we were looking at the very common genetic disorders. It is interesting to consider that there is a vast number—too many, some of us think—of Members of this House. At least 40 of you, on mathematical probability, will carry the fatal genetic mutation for cystic fibrosis. That is very common indeed and much more common than the problem with mitochondrial disease, even though we are beginning to see that it is becoming rather more common as we get better molecular techniques.
What is very clear, and it is very important because it has not been stated, is that the number of families who will be of child-bearing age when a mitochondrial disease is diagnosed will be very few. That is important because we are not talking about a large number of people; we are talking about a small number, but they have a definite problem for which they need some desperate solution. They are prepared to do whatever they think is best for their families, with informed consent.
In the case of Jeremy, he was a bit slow to grow, but by nine months he could not lift his head. He started to vomit; he had diarrhoea; he then progressively developed muscular weakness and started to get epileptic fits. These fits would often go on all night; this child screamed with pain and was uncontrollable; eventually, having gone both blind and deaf, with severe mental problems with his brain, he died at the age of two. There was no treatment. His mother came to see me to ask if there was any possibility that she might have some screening of her embryos in the future. This was in 1989. Certainly, Alan Handyside and I had discussed the possibility of looking at mitochondrial disease, but we did not have the molecular techniques at that time to have any chance of being able to screen an embryo. It is true that that screening has now happened
and can be done; indeed, there is a very interesting report from Newcastle University showing how that can be done in some cases. However, it is not always satisfactory, for the reasons that the noble Lord, Lord Patel, stated.
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We could not do pre-implantation genetic diagnosis; the lady had another problem. Interestingly, I will say this to the noble Lord, Lord Deben: this lady had had two stillbirths. She had also had a couple of miscarriages. It is quite probable that those losses of life from within her were a result of undiagnosed mitochondrial disease. Of course, we will never know, but these people have reproductive failure rather more often. She therefore had only one choice: her choice was to have antenatal testing, which has become increasingly possible, and now can be rather more reliable than it was then, with either chorionic villus sampling or sampling the fluid from around the baby. Amniocentesis is now done. Of course, if the diagnosis is made, this woman would then be left with the decision whether or not to have an abortion.
I must tell the noble Lord, Lord Deben—because I understand that he is very much against abortion, and I respect that deeply and appreciate that stance that he has made repeatedly—that the reason why women go for pre-implantation genetic diagnosis is mostly because they want to avoid the chance of having an abortion of their pregnancy. That has been the consistent reason with all the cases that we tackled in the early stages of this technology. The other interesting thing is that, although cystic fibrosis is so very common, in fact in the first 10 years of our treatment of this disease, we had only about 12 births, because very few people want to go through with this technology in any case because it is so complicated. We were not charging; it is not an expensive treatment but it was a question of whether they really wanted to go through it.
I remember the first patient, Mrs Edwards, whom I can talk about. She was adamant that she was not prepared to consider another termination of pregnancy because it was so damaging, and she felt that it was morally wrong. I say that facing the right reverend Prelates opposite, because they will understand how clearly that ethical issue is something that these patients consider. I want to make that absolutely clear from the start.
Ultimately, in a pluralistic, democratic society, we have certain ethical principles. We have the principle to try to do good, not to do harm; to arrive at a just solution wherever possible, as doctors; and to respect the autonomy of the individual in front of us. That respect for autonomy means making sure that you discuss the difficulties of the treatment, the possible side-effects, and the risks that you might get the diagnosis wrong. By the way, we made a pre-implantation misdiagnosis. I remember one family that ended up with an affected child in spite of our diagnosis; mistakes can happen medically. That child, remarkably, is still alive, which is very surprising. The family came to terms with that mistake and fully understood that we had taken all possible due care, so there was never a massive issue about that. That was a very remarkable family.
None the less, we have to accept that there is nothing worse than losing your child except one thing: I do not know of a worse injury than losing your child after watching a gradual deterioration and devastating death in pain and discomfort, with the disruption that that means for the rest of that family. That is something that these families do not get over easily; they have to try to find some way out of this. Therefore, I beg your Lordships to understand that we need to consider the autonomy of individual patients who might not share precisely the same values that we have, who may not have the same religious views that we have. I speak very clearly about this, because I understand absolutely that our ethical principles are based on respect for human life. That is something that I absolutely share: we understand from the chapters in Genesis that we are created in the image of God. We understand also that sometimes we are accused of playing God. I say to the right reverend Prelates opposite—and this is perhaps very presumptuous of me—that playing God is something that we do very properly; it is something that we do by imitatio Dei. We do not try to supplant God, but to augment His works because we feel that that is one way of improving and supporting life and nurturing it. Let us be clear: it is not so much about we do; it is about having the wisdom and the judgment to make certain that we are doing the best we can in these individual cases. We have come to the point now with this particular diagnosis that it is absolutely right to go ahead with the technology that the noble Earl, Lord Howe, talked about in his speech.
Finally, I do not believe—in spite of what we have heard this evening—that this technology threatens the fabric of our society in the slightest bit. It does not threaten the fabric of our society; on the contrary, in a way it protects it because what we are doing is recognising our limits by accepting regulation. We have not said that we are going to go ahead with this; we will have to see what the regulatory authority wants. The noble Earl knows perfectly well that I have some misgivings about regulation in certain areas, but none at all about this. I think that will be shared universally by my colleagues, some of whom are listening to this debate.