Abortion (Disability Equality) Bill [HL]

Lord Winston Excerpts

Report stage (Hansard): House of Lords
Friday 24th February 2017 Lords Chamber

Moved by

[Lord Winston]

1: Clause 1, page 1, line 2, at end insert—
“( ) After section 1(1)(a) insert—“(aa) that the pregnancy has exceeded 24 weeks and there is a high probability that the fetus will die at, during, or shortly after delivery due to serious fetal anomaly; or”.”

[Lord Winston (Lab)]

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.

--- Later in debate ---

However, should the noble Lord decide not to withdraw his amendment and instead to divide the House, I humbly ask that all noble Lords stand with me and people with congenital disabilities and affirm that we are all equal.

[Lord Winston]

My Lords, I shall not use unparliamentary language. I reject the charge that my view of this matter is in any way cynical. I believe that it is compassionate. Perhaps unlike the noble Lord who has promoted this Bill, I have been in constant contact with pregnant women who have had to go through these difficult decisions throughout their pregnancy throughout my professional life. I have been a practising doctor—I am now not on the register as a full practitioner—for more than 40 years, and I have tried to listen rather than interrupt; I have tried to be non-judgmental rather than to judge; and I have tried to find a way through what are very difficult decisions for both the patient and her family and for my team and myself.

Sometimes there have been very long arguments and sometimes we have debated these issues repeatedly among ourselves and tried to internalise the arguments to come to the right decision. I do not think that my moving this amendment is in anything other than good faith, and I am sorry that it seems, at least to the noble Lord, to be merely a cynical adjustment to his Bill. If it was, I would have tried to have the Bill talked out, but that is not my intention. My intention is to discuss and examine some of the things that have been said during the passage of the Bill, to which a very large number of people will have a strong objection—and also of course because there is a great deal of misinformation.

The noble Lord, Lord Shinkwin, is under the impression that DNA diagnosis is the next generation of diagnosis. Believe me, it is not. I tried to explain that to him but he probably did not understand. If you have 6,500 different genetic disorders and you have, let us say, 500 different mutations that can cause each of those disorders, you end up with hundreds of thousands of different mutations for which you cannot screen at seven weeks, or even 24 weeks. The problem is that they come at different times. Unless the patient has already had and is bringing up, with great difficulty, a child with one of these problems, who is going to die, they do not know that they are carrying a mutation.

So one reason for this amendment—I thought it would have been quite obvious—is that one of the big problems for families is that a large number of women are, in all good faith and as great parents and wonderful people, trying to bring up children with Down’s syndrome, or with conditions that are far worse than Down’s syndrome in their impact on the child, and they frankly cannot manage to bring up another child, and there is a risk of those children having even more difficulty in their upbringing, adding great damage to those families. That is partly the purpose of this amendment.

I did not understand the interjection by the noble Lord, Lord Alton. He comes from Liverpool, where a large number of pregnant women do not present at an antenatal clinic until they are beyond 24 weeks. This happens in the East End of London as well. I remember that I was once called down to casualty to see a patient with abdominal pain. I went down there, and the casualty officer said, “I don’t know what’s wrong. She’s got a large swelling in her abdomen and she’s in abdominal pain”. This 22 year-old was in the second stage of labour at 40 weeks of pregnancy, but she denied that she could be pregnant because, given the background she came from, she would not have undergone antenatal screening. Sadly, we do not live in a society that always has the same values that we have. Very often, women do not present at antenatal care for all sorts of reasons. One of the reasons for tabling this amendment is to protect those women.

The noble Lord has mentioned this before, but I am surprised that he raised the question of cleft palate, Down’s syndrome and club foot. With all due respect, most of us would regard these as being relatively minor and certainly not, on the whole, life-threatening conditions. However, cleft palate can be; there is a mistake about understanding this. Very severe central line defects are incompatible with life and, in spite of surgical operations on the foetuses, many of these foetuses will die in utero with such serious defects, even though they are diagnosed as cleft palate.

I will tell the House of one patient I heard about from a colleague of mine at Imperial College only a couple of weeks ago. This woman has now reached just beyond the 24-week limit and there is a question whether the child has hydrocephalus. The woman does not want to terminate the pregnancy but dreads the thought that she is going to have a baby that might have the most serious cranial defects. The advice that we gave, after great difficulty and a lot of discussion, is to wait to see how the pregnancy develops, because some of these babies do not end up with severe deformity, while others have a monstrous head that cannot even be delivered through the birth canal. The solution is to do some kind of horrific delivery with an operation on the foetus at term—in a woman who is now anaesthetised—or to do a caesarean section. We have to understand that this is not a simple matter of just obstetrics and medicine solving everything.

One or two noble Lords talked about the word “probability”. I would have thought it pretty obvious what that meant. We have a definition of the perinatal period, which is what I am referring to. That would normally be defined as the first month after birth, but if noble Lords feel that it should be the first week, which is why I did not define it, I would be happy to accept that in the amendment. That perhaps should be considered. But these things are defined: death before delivery is quite clear, death during delivery is quite clear and I would argue that death in the first stage of the perinatal period is also perfectly clear. I have no problem with any of the issues about it being shortly afterwards.

As for a serious abnormality, let us just look at the Abortion Act as it is written. As it stands, it is full of these rather gentle allusions and is very carefully worded. The noble Lord used the word “insensitive”. I find that truly astonishing, because with the best of faith I do not feel that I am insensitive. I do a huge amount of outreach in schools. The noble Lord may not realise, but much of that outreach is in schools with children who are severely disabled. I go into those schools regularly because I feel so strongly about disability rights. I do not feel prepared to have the finger pointed at me saying that I am not trying to do my best, in a small way, for a society where disabilities occur.

Claus 1(1)(a) of the Abortion Act refers to the situation where,

“the pregnancy has not exceeded its twenty-fourth week and … the continuance of the pregnancy would involve risk, greater than if the pregnancy were terminated”.

That is a judgment; it is not an absolute. We cannot say exactly what the risks might be. No doctor can say for certain that a termination of pregnancy will be safe. Terminations can occasionally result in the death of the individual, completely surprisingly. I have seen people haemorrhage profusely after termination, which is not always easy to recognise and document. One has to say that we make a judgment—that was my point about the ethical considerations in trying to do good rather than harm. I was hoping that that would be understood in this amendment.

However, I have listened carefully to your Lordships and do not want to prolong this debate any further. I am concerned of course about the women of Northern Ireland, who do not have equality with women in the rest of Britain. I feel that there is a question of discrimination, but for the moment I beg leave to withdraw the amendment.

Amendment 1 withdrawn.