Abortion (Disability Equality) Bill [HL]
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.
My Lords, it is a privilege to speak after the noble Lord, Lord Winston. He and I go back together a long time to when we both created life—I as lawyer and he as expert witness—in Diane Blood’s case. As a result of that case, she was able to create two boys using her dead husband’s sperm. I listened with care to his speech. We are privileged to have him, one of the greatest experts in the country on the subject, and I agree entirely with his speech; I simply do not agree with the amendment, and I need to explain why.
I am a man; I am not, as far as I am aware, disabled at the moment; and I am not a doctor, so what is my reason for speaking on this subject, as I believe that it is very much up to the woman and parents, not to others, to decide whether to have babies? The reason I speak is because of my experience when I was counsel for the Family Planning Association in Northern Ireland, in a case that went to the Court of Appeal in Northern Ireland seeking to provide guidance to women in Northern Ireland, where, as your Lordships will know, there is no abortion Act in force, only the common law. The problem in Northern Ireland was, and is: what kind of medical service should be provided to those women in a common-law situation without the Abortion Act?
What I discovered during the course of the case and told the Court of Appeal, which was pretty disturbed by it, was that the one situation in Northern Ireland where women can get abortions without having to come to England, Scotland or Wales is on the grounds of foetal abnormality. They do so at common law, and they do so quite regularly. They do so without the benefits or burdens of the Abortion Act. My difficulty with the Bill, but my particular difficulty with the amendment, is that were it or anything like it passed, we would go back to the common law position, which is very uncertain and vague, but encourages the worst thing of all, which is backstreet abortions. The more difficult you make it to terminate pregnancies against the wishes of the woman, the more likely it is that she will be driven to other ways of aborting the foetus. That seems to me profoundly undesirable.
I understand perfectly well where the noble Lord, Lord Winston, is coming from with his amendment, but it cuts down the situation in which abortions are lawful under the Abortion Act and should remain lawful: where there is foetal abnormality but the foetus is unlikely to die when born. It should not be our function to limit the circumstances in which there can be a termination, given all the safeguards in the Bill about the medical profession and its ethics, which the noble Lord has talked about. Therefore, although I agree entirely with his speech, I cannot support his amendment.
My Lords, I did not intend to speak to the amendment, but I have to stand up as a fellow medical practitioner—if a very humble one—to say that whenever the noble Lord, Lord Winston, speaks on his subject in this Chamber, he makes me feel young again. I am again a medical student listening to one of the best profs give a superb tutorial, and I thank him for that, because it was extremely useful. I add only a couple of things. I get very tired of people arguing that doctors assist women towards having an abortion—that somehow they want to get on with it, are complicit and do not allow women enough time. In my experience as a family planning doctor, and even when I was a Member of Parliament, I never came across examples of this. Women are listened to very carefully and allowed to make up their own mind. Allowing women to have the choice is essential.
A number of people say that women are terribly upset and traumatised after they have had an abortion. That is, again, a rarity. Usually, if they have had the right counselling and right termination, when they have had the abortion for whatever reason—particularly in the cases we are discussing this afternoon—there is a sense of great relief at being able to get on with their own lives. If the Bill went through we would be taking that away from a large number of women and I would deplore that.
My Lords, I will speak against the amendment and support the noble Lord, Lord Shinkwin, in bringing the Bill forward. The noble Baroness, Lady Tonge, and the noble Baroness, Lady Barker, who is sitting in front of her, will not be surprised that we take a diametrically opposed view of this and not for the first time in our lives. They will recall that the reason I left their party was their proposition that abortion should become party policy rather than a conscience question. I have always been saddened that this issue should be politicised. Diametrically opposed views can be sincerely held for perfectly good reasons.
The noble Baroness, Lady Tonge, and the noble Lord, Lord Winston, have spoken as doctors. I am only the humble father of a doctor but I had the chance earlier this week to speak to two eminent doctors, one a former president of one of the royal colleges and the other a former president of the BMA, both of whom are opposed to the amendment. For one this is because of the danger of misdiagnosis. She gave me the specific example of a baby whose mother had been told it had a fatal foetal disability, but this did not turn out to be the case when it was born. The other said that it is far better to go ahead with the pregnancy and for the baby to be delivered in order to help the mother at that stage. I will come back to that point in a moment, because it is borne out by the guidance of the Royal College of Obstetricians and Gynaecologists in the submission it made on this subject in 2010.
We can disagree about these things, but let us at least accept that there is a disagreement. I wish that the noble Lord, Lord Winston, had been able to bring forward his amendment in Committee, when we would have been able to have a more robust argument and discussion about it. It is strange that this amendment should be laid before your Lordships’ House at 24 hours’ notice before Report. Since it has been, I have done my best to discuss it with others who know more about these things than I do. In 1990, when a Member of another place, I moved my only amendment in 18 years in the Commons on which there was an equality of votes. Mr Speaker Weatherill—who became Lord Weatherill—had to use his casting vote for the status quo. He was one of my two sponsors when I became a Member of your Lordships’ House and I know through subsequent discussions with him how disturbed he was that he was not able to follow his conscience that day but had to follow precedent in upholding the status quo. My amendment sought to ensure that, in the 1990 amendment to the 1967 Abortion Act, the nature of the disability would be placed on the green form authorising the abortion. I was challenged by Harriet Harman who said that it was scaremongering for Professor John Finnis, one of the country’s leading experts on jurisprudence, to suggest that the legislation as drafted could lead to abortion on the grounds of cleft palate. As noble Lords know from the figures that have been produced, there have been abortions post-24 weeks’ gestation on the grounds of cleft palate. Notwithstanding the examples the noble Lord gave a few moments ago, 90% of all babies diagnosed with Down’s syndrome in this country are now routinely aborted.
I have never described the Department of Health as being responsible for eugenics and I would never do that, nor do I believe that doctors in this country are. The noble Lord, Lord Shinkwin, has said that society slides into eugenics when these things become normative. Therefore, I hope that when the noble Lord replies to the debate, he will tell us exactly what the list of disabilities is that cannot be diagnosed before 24 weeks’ gestation. Despite my own strongly held views about the law—indeed, 8 million abortions have taken place in this country since 1967, there are around 600 every working day and one in five pregnancies is now ended on those grounds—this Bill is not about that. This Bill is about equality legislation and discrimination, and whether a child with a disability should be treated differently from an able-bodied child.
I simply point out to your Lordships that there is a certain irony, as the very last words spoken by the Minister at the Dispatch Box in the previous debate on a Bill about car parking were about ensuring equality of opportunity for disabled people to be able to park in car parking spaces. All Members of your Lordships’ House have properly campaigned over the years on the rights of disabled people, and have a huge reputation in this country for asserting those rights. Is there not an inconsistency if we campaign for ramps to be attached to public buildings in this country but say that it would be better that someone with a disability had not been born in the first place? What sort of message does that send?
I do not think that people like me can put forward arguments such as this if we are just anti things. One of the things in which I got involved in my own city of Liverpool was the building of the first baby hospice in the country, Zoe’s Place, of which I continue to be a patron, and others have since been opened. It was built specifically to help mothers in this situation. You have to be positively for the unborn child but for the mother as well in these tragic and very difficult circumstances.
I admire medicine when it is at its best. The noble Lord, Lord Winston, and I sometimes disagree. Nevertheless, he knows that I admire hugely a lot of the work that he has done. When noble Lords such as the noble Lord, Lord Winston, are able to develop—as they are doing—surgery in utero to deal with things such as spina bifida, that is good science and good medicine marching hand in hand with good ethics. However, if I were to say to the noble Baroness, Lady Barker, for instance, that I was in favour of abortion beyond 24 weeks for reasons such as gender, race or—if it could be diagnosed—orientation, what would your Lordships say to me? I hope that they would rebuke me. That is why I argue that we should treat disability in precisely the same way as those issues.
I said that I would return to what the Royal College of Obstetricians and Gynaecologists had to say. There were two things, one of which shocked me, when I read the details of what happens in late abortion of this kind. This is the college’s description, not mine:
“Intracardiac potassium chloride … is the recommended method to ensure fetal asystole. After aspiration of fetal blood to confirm correct placement of the needle, 2-3 ml strong … is injected into a cardiac ventricle. A repeat injection may be required”.
It goes on to describe other ways of doing this. This is a late abortion. Babies have been born and lived from 23 weeks’ gestation, so this is beyond viability that we are talking about. The college also states:
“Most women will be unaware that, within the NHS, medical abortion induced by drugs is the procedure usually offered after 14 weeks of gestation. The prospect of labouring to deliver a dead fetus will be difficult for many and discussions about the procedure will require sensitive handling by experienced staff. Although the prospect of labour in these circumstances is especially daunting, some women gain some satisfaction from having given birth and have welcomed the chance to … hold their baby”.
The college goes on to talk about the options that need to be offered for pain relief,
“and whether the woman might want to see the baby and have mementoes such as photographs and hand and footprints … She will … be made aware of information from a postmortem … These discussions are likely to be distressing for the woman and her partner”.
So let us be very clear that this is a tragedy for everyone involved.
I turn to the noble Lord’s amendment. It states that,
“there is a high probability that the fetus will die”.
We are drafting legislation here. What does this mean? Is the probability 99.99990%, or 50%? How should a high probability be objectively defined in law? Why is that not specified in the wording of the amendment? I am very disturbed by the fact that the noble Lord’s amendment says that you may go on to carry out these procedures “shortly after delivery”, when the baby has been born alive. Is this a matter of minutes, hours, days, weeks, months or, arguably, even years? It needs to be clearly defined in law, otherwise it will be interpreted far too widely. That is why the amendment should have been brought forward in Committee, when we could have had a proper discussion about it. However, I hope that the amendment will be resisted and that the Bill in the name of the noble Lord, Lord Shinkwin, will be given a safe passage so that it will have a chance to go forward and there can be a proper debate about it in another place.
My Lords, I intended to speak much later but I have to emphasise something which the noble Lord, Lord Lester, said, that we often forget. This is not and should not be a political issue. It is often about the life and death of women. The remark made by the noble Lord, Lord Alton, for whom I have the deepest respect, about gender and race in comparison to disability, is unfortunate, to say the least.
We have to remember the history of abortion in this country. At one time, women who could not obtain an abortion for legal reasons resorted to what were called back-street abortions or self-abortions. Those were dangerous and often humiliating. Do we really want to go back to that? The Bill, if it is carried, could mean going back to that for women. I suspect that if our laws were changed to deny abortions at any stage we could see women’s lives put in danger, and that would be completely abhorrent. For those reasons and others, I cannot support the Bill.
I have the deepest respect for the noble Lord, Lord Shinkwin, but this is an emotive issue, and much has been said already. First, on disability, I read something recently by the disability rights advocate, Professor Tom Shakespeare, who himself has a disability. He said that prenatal diagnosis is not straightforwardly eugenic or discriminatory:
“Nor should we interpret a decision to have … a termination as expressing disrespect or discrimination towards disabled people. Choices … are not incompatible with disability rights”.
I agree with him.
Our laws on abortion, which we are fortunate to have, have been well debated and carefully constructed. They are supported by professional bodies and by the vast majority of the general public. Women overwhelmingly support testing for abnormality in a foetus, knowing that the result may cause them immense distress and difficult decisions.
We know that some conditions cannot be diagnosed within 24 weeks. In fact, some can be diagnosed only within the third trimester. I find the Bill quite punitive. We know that parents find a decision on abortion difficult and distressing. They think not only of themselves —they are not being selfish—but of the whole family, possibly including children who have already been born. Such parents need support, advice and often grief counselling. It is not a simple matter. Medical services take account of this distress—my noble friend Lord Winston spoke eloquently about that—and I know some parents who have been advised and helped to hold a funeral for the aborted baby.
While this is an emotive Bill, we have to consider the rights of women and of the family, and think about the impact that it might have in particular on women who used to go for those back-street abortions.
My Lords, I am, of course, not a doctor, although I have the great honour of being an honorary fellow of the royal college of which the noble Lord, Lord Winston, is such a distinguished member. I well remember the situation which produced the result that the noble Lord has spoken of—that of amendments on abortion being made to our very interesting, important and ground-breaking Bill on IVF and related matters. I was clear, as were the Government, that the approach to the main part of that Bill depended on one’s conscience, so there was a free vote in both Houses of Parliament. There was always the possibility that the result of a vote in this House would be different from one in the House of Commons. That was a very serious thought in relation to a Bill of such ground-breaking importance, and the introduction of amendments on abortion in the Commons rather increased that difficulty.
However, I am glad to say that in the end we got what I think is regarded in the general scientific areas of the world concerned with these matters as a very good Bill. It allowed research which is not allowed in quite a number of other parts of the world. I know that the noble Lord, Lord Alton, has a different view from mine, but that was an important aspect of the Bill which depended very much on people’s consciences.
So far, I have understood this Bill to deal with the principle of equality as defined in our legislation in relation to disability. I understand that the Bill is based on the proposition that abortion would be in breach of the principle of not regarding disability as a ground for discrimination. It is as simple as that. The idea that this amendment would destroy the Bill and bring back back-street abortions and so on strikes me as rather excessive. It is an amendment to the existing Bill; it does not seek to abolish the Abortion Act. It simply suggests—with a good deal of merit, as I think my noble friend Lord Shinkwin has said—that the principle of not discriminating against disability should apply to this provision.
This amendment, produced by the noble Lord, Lord Winston, suggests that something else might be done. It proceeds on the basis that the nature of the condition is such,
“that the fetus will die at, during, or shortly after delivery due to serious fetal anomaly”.
That is not quite the same as what is in the Abortion Act. If that were the formulation of the clause, it might well avoid the idea that this provision of the Abortion Act is a breach of the rule against discrimination on the ground of disability. This is a different point and I can see the force of it as a different matter entirely from the provision in relation to this matter which is currently in the Abortion Act.
My Lords, I pay tribute to the noble Lord, Lord Shinkwin, for bringing the Bill before your Lordships’ House. It is very important that we come back to what the Bill deals with and possibly leave behind some of what I might regard as the slightly unwarranted assertions that we are in danger of reintroducing back-street abortions wholesale as a consequence of this Bill. What it actually does is give us the opportunity to remove the right to abort after 24 weeks an unborn baby which has a disability unless there is a risk of serious permanent damage to the mother or her life is at risk. I say with the greatest respect that it is, therefore, perhaps a rather more modest proposal than was described by the noble Lords, Lord Winston and Lord Lester.
Amendment 1 deals with the situation in which the foetus will die at or shortly after delivery due to serious foetal abnormality. I absolutely oppose this amendment. The noble Lord, Lord Alton, has very competently articulated some of the problems with the amendment, and I am not going to rehearse all the arguments against it. I will simply tell another little story. I have a friend: her name is Tracy Harkin. Tom and Tracy have a little daughter. When Kathleen Rose was born in November 2006, she had trisomy 13, which is one of the conditions that is generally regarded as what is loosely described as a fatal foetal abnormality. Kathleen Rose is now 10 years old. I want to quote her parents: “She has a beautiful, distinct personality. She is known for her mischievous laughter and her enormous hugs. Last year, she was the angel in the school nativity play, and to all of us, of course, she was the star of the show”.
I have another concern. The amendment in the name of the noble Lord, Lord Winston, would extend the provisions of this Bill to Northern Ireland. As noble Lords will know, Northern Ireland is currently in the midst of a very fraught election campaign. I know that in Northern Ireland the tabling of Amendment 1 and Amendment 8 has caused considerable anger and concern. Both justice and health are devolved to Northern Ireland. Therefore, the law on abortion in Northern Ireland—undoubtedly a sensitive and very controversial topic—should be dealt with only by the people of Northern Ireland through their constitutional processes. And my goodness, the right to do business in Northern Ireland through constitutional process has been very hard won. The Abortion Act does not extend to Northern Ireland. That is a position which, despite consideration, has not changed since 1967. It is therefore entirely inappropriate for this House to be considering introducing a change to an Act that does not apply in Northern Ireland and making that change apply in Northern Ireland.
As noble Lords may be aware, only last February, the Northern Ireland Assembly considered the question of whether abortion should be legal in Northern Ireland on the grounds of what is described as “fatal foetal abnormality”—a term which even the noble Lord, Lord Winston, explained to us lacks clarity. For a disability to be fatal, when does it have to be fatal—within hours, days, weeks, months or years? What of Kathleen Rose, heading for her 11th birthday? After a lengthy debate, the Assembly decisively rejected this move by 59 votes to 40. Following last May’s election, an MLA brought forward a private Member’s Bill to allow for abortion on these grounds. The Northern Ireland Assembly had plenty of time to consider this Bill—in the nine months since the last election, the Assembly passed one Bill: the Finance Act. However, the private Member’s Bill was not dealt with and it fell. The Northern Ireland Assembly is the place where this issue should be developed and debated, as it affects the people of Northern Ireland.
I know that some noble Lords do not accept the law on abortion in Northern Ireland, but when Parliament accepted the principle of devolution, we accepted that devolved parliaments have a right to make decisions about their own law, whether we like them or not. Reversing that principle and bringing the powers back to Westminster would be a major constitutional change, which Parliament would have to consider very seriously in the light of all the implications of such an action. It is fundamentally wrong for this House to seek to make a decision in this area and we should not, therefore, support these amendments.
Equally importantly, the sensitivities which surround this amendment are greatly compounded by the fact that they are proposed within five days of the elections in the Northern Ireland Assembly. Those elections are unlikely to result in a devolved Assembly because the two parties having the greatest number of seats currently have indicated that they will not go into government together unless significant preconditions are met. In those circumstances we are moving rapidly towards direct rule, with all the political sensitivities attaching thereto, including the threat to our fragile peace process. Only yesterday there was an attempt to murder a police officer. A bomb was placed under his car; that bomb exploded and in all probability it would have killed him. These are fragile days in Northern Ireland and noble colleagues who are supportive of this Bill are understandably there today and unable to address your Lordships’ House.
Whatever happens, there will eventually be a devolved Assembly which has a mandate to uphold or change Northern Ireland abortion law, and that is where this debate should take place. I hope, therefore, that other noble Lords will join me in rejecting Amendment 1 because of the effect of it on the Bill of the noble Lord, Lord Shinkwin, and in rejecting Amendment 8 because it is repugnant.
My Lords, my position on the Bill is rather less in favour of the noble Lord, Lord Winston, than it is against the Bill as a whole. I come to the Bill with no pretence to any medical expertise or direct experience in this field but, alas, as an arid lawyer. As such, I seek to stand aside from the huge emotional weight which always attaches to debates on abortion and on disability—whereas here, where both those emotive topics come together, there is much to be disregarded.
The Bill is concerned with cases where there is a substantial risk, recognised by two doctors, of a child being born with a serious handicap. As the noble Lord, Lord Shinkwin, for whom I have the most profound regard, recognised at Second Reading, at column 2546 of Hansard, if that risk comes to light within the first 24 weeks it is highly likely that, if the mother so wishes, she may be aborted under Section 1(1)(a) of the Act. However, if it is discovered later, the question arises—and this is the crunch question—should the mother be compelled to carry that child to birth or should she be allowed a later abortion?
According to the statistics given at Second Reading by the noble Baroness, Lady Chisholm, at column 2560 of Hansard, in 2015 there were some 230 abortions carried out under the Section 1(1)(a) provision after the 24-week initial period. That squares with the figure given by the noble Baroness, Lady Hayter, of some 200 to 300 women.
The noble Lord, Lord Alton, for whom I have the greatest respect, as I have for all who have taken part on both sides of this debate, referred at Second Reading—as he has again today—to terminations on grounds of “rectifiable disabilities”, and mentioned cleft palate and hare-lip, and in Committee he added club foot. I find it difficult to suppose there have been Section 1(1)(d) cases after 24 weeks on those grounds, and that two registered medical practitioners have certified in the terms of that provision. If they have, that seems to be a matter for the proper policing of this legislation. It is not the altar on which should be sacrificed the interests of those 200 or 300 women a year whom this Bill is otherwise condemning to be required to bear that child, whatever feelings they may develop, and however justifiable that it is a disability which only came to light after 24 weeks. For my part, I would not wish that they be so condemned.
My Lords, I am a complete layman in these matters. When the noble Lord, Lord Winston, responds, can he tell the Committee what in his view is a “high probability”? What does he mean by that? Also how long is “shortly after” a birth? Would that be hours, days, weeks or years?
My Lords, I thank the noble Lord, Lord Winston, for the time he has given me to understand fully his amendment, and I put on the record my deep admiration and respect for so much of the work he has done.
Of all people, the noble Lord, Lord Winston, will be only too aware of the extraordinary medical progress that is being made in perinatal and neonatal care. In this Bill we should be advocating for the best treatment of children with disabilities. The provision of holistic care, including perinatal and neonatal hospice care at the end of life, can help to ensure that these babies are treated with dignity, care and love. While the life expectancy of these babies may well be brief, they do have a life and are significant family members who will be valued, remembered and treasured.
The Northern Ireland Executive have recently set out a commitment to provide such hospice care in the Department of Health’s 10-year plan on palliative care for children. I hope that we will see such care being provided elsewhere in the UK. Perhaps the Minister can comment on that.
Amendment 1, aside from being antithetical to the spirit of the Bill, is fraught with difficulties, as we have heard in the debate. Taking the amendment in the order of its wording, what would be judged to be a “high probability?”. We have heard that question repeatedly in the debate. Is that more than 90%, more than 50%, or 65%? How would the decision about likely death be made? Would that be with or without treatment, since conditions may be classified as the same but manifest varying symptoms, from those which may be lethal to those which may in fact be treatable or not immediately lethal. In my meeting earlier with the noble Lord, Lord Winston, we discussed cleft palate, which can be very severe or quite minor and correctable. How long would “shortly after” need to be to qualify? Would it be a matter of hours or days or months? What would count as a “serious fetal anomaly”, since that is not even a medical term? Amendment 1 does not bring any certainty; rather, it raises more questions than answers.
These questions demonstrate how the law would treat these children differently from those without disabilities. It would again enshrine the discrimination that my noble friend Lord Shinkwin is seeking to eliminate, and I encourage noble Lords not to support the amendment.
My Lords, after that intervention I need say very little indeed. I share with everyone else my admiration for the noble Lord, Lord Winston, as I have for my noble friend Lord Shinkwin. However, while it would be helpful to have the noble Lord’s assurance as to what is meant by these terms, that is not sufficient. It has to be on the face of the Bill because that is what the law will be. Otherwise it will be decided by the courts, which would mean there is no certainty. The purpose of good legislation is bring certainty, not doubt.
My Lords, we have had a thorough debate on this amendment and I thank my noble friend Lord Winston, who has such great expertise in this field, for his clarity in explaining why he wishes to move this amendment.
This is a sensitive matter with strongly held views on both sides. The noble Baroness, Lady Tonge, mentioned a woman’s right to choose: many people hold that view. My noble friend Lady Massey said that this was not a political issue. I agree that it is not a political issue. Whenever these matters are debated, in both Houses, Members have to make up their own mind; I think that that is the right thing to do. The term “back-street abortionist” has been used several times this afternoon. Many of us remember those days and absolutely no one want to go back to a time when women were put at such great risk.
The noble Baroness, Lady O’Loan, mentioned Northern Ireland. We may be debating that later, on other amendments, but I take her point. The arguments have been well rehearsed on both sides of the debate today and from the Front Bench I can say only that the Opposition still fully support the Abortion Act 1967.
My Lords, I start by joining other noble Lords in congratulating my noble friend Lord Shinkwin on steering the Bill through its Lords stages so far and on his engagement with noble Lords on the Bill. It raises important and sensitive issues about disability rights and abortion and it is quite right and proper that these are discussed and scrutinised at length by your Lordships. I am also grateful to the noble Lord, Lord Winston, for his amendment and for the scientific authority which he brings to the issues. I commend all noble Lords for the quality of the debate we have had on this amendment.
As I set out in Committee, the issue of abortion is a matter of conscience for noble Lords, as the noble Lord, Lord Alton, and the noble Baroness, Lady Massey, reminded us. The decisions that we take on this transcend the normal political or partisan divides and it is for that reason that the Government have taken and continue to take a neutral position on this issue and on the Bill. The Government do not, therefore, have a position on the amendment of the noble Lord, Lord Winston, or on those that will follow in the House today. I do not intend to comment on subsequent amendments unless there are specific points that noble Lords wish to put directly to me and to which I can respond.
I do, however, wish to make one point that I believe is germane to the issues under discussion in this amendment and, indeed, in the Bill in general, and that is that it is vital that we have accurate statistics on and evidence for the reasons for termination of pregnancy. Officials are working directly with hospital staff to improve reporting on abortions. We have also reminded all doctors involved in abortion care of their legal responsibility under the Abortion Act 1967 and the Abortion Regulations 1991 to submit form HSA4, the abortion notification form, within 14 days of a termination.
Overall, between 2013 and 2015, there was an 18% increase in the number of reported ground E abortions. While we obviously cannot claim that this increase is solely the result of increased reporting of these abortions, as opposed to increased instances, we do know that this is the case in some of the units that officials have been working directly with. The department will continue to monitor carefully levels of underreporting of abortions for foetal abnormality.
The noble Baroness, Lady Stroud, asked about palliative care for babies. I fear that I do not have that information to hand but I will be happy to write to her on the issue.
My Lords, I thank all noble Lords who have expressed support for my Bill and I thank the noble Lord, Lord Winston, for his medical lecture on so-called serious foetal anomalies. I address the noble Lord, Lord Winston, with respect but I also address him and all other noble Lords as an equal. I should say at the outset that I totally reject the very premise of this amendment. Other noble Lords have already explained why the amendment is totally inappropriate and, indeed, crassly insensitive, from a Northern Ireland perspective in particular, when it is linked to Amendment 8. I offer a disabled person’s perspective on why it is unacceptable. I have been consistently clear that the purpose of my Bill—a disability rights Bill—is to bring the law as it applies to disability discrimination before birth into line with the laws that your Lordships’ House has already passed to counter disability discrimination after birth.
Noble Lords will know that I accepted an amendment in Committee for an impact review as a logical amendment to a logical Bill. However, in the context of a Bill which promotes disability equality where discrimination begins before birth, this cynical amendment is not remotely logical. Indeed, it runs counter to very essence of my Bill. The amendment reinforces discrimination because it singles out even more acutely a particular group for destruction on grounds of disability. It seeks to legitimise their destruction after 24 weeks with terminology that commands no clinical consensus and despite the fact that cell-free foetal DNA can first be detected in maternal blood as early as seven weeks’ gestation, which means that genetic or chromosomal abnormalities are being detected well in advance of 24 weeks. So what justification is there for abortion after 24 weeks on the grounds of so-called serious foetal anomaly?
Some noble Lords have seen that I recently asked the Department of Health about the number of fatal foetal abnormalities diagnosed in each of the past five years. The answer was that the information is not collected centrally. I followed up and asked about the number of fatal foetal abnormalities diagnosed after 24 weeks in each of the past five years. The answer was the same: the information is not collected centrally. I find that revealing, not because information is being concealed but because it reflects the reality—the truth of the situation.
Those noble Lords who were invited to attend a meeting on this issue, which I understand was held somewhere in the House on Wednesday, could be forgiven for thinking that there is some medical authority—some clear medical consensus—behind the definition of “fatal foetal abnormality”. There is not because there is not an agreed definition. Indeed, the consensus is that what is considered fatal or life-limiting involves a degree of subjective judgment which is influenced by understandings and by the availability of technology, both of which can change with time. The noble Lords who received the invitation to that meeting might also have got the impression, as was intended by the wording of the invitation, that those 230 disabled babies aborted after 24 weeks in 2015 had all been diagnosed with severe or fatal foetal abnormalities. They were not. Of the 659 babies aborted for the crime of having Down’s syndrome, for example, two were aborted at 25 weeks, one at 26 weeks, one at 28, one at 30, another at 31, three at 32 weeks, two at 33, two at 34—and one at 39 weeks.
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.
My Lords, it is the custom of the House on Fridays to finish at 3 pm and we are very nearly at that time. I do not think that we will do any debate justice by starting another amendment at this stage. I hope that noble Lords will understand if I now move that the House do now adjourn.
Clause 1: Disability equality in respect of abortions
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”.”
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.
The question for me, apart from the obvious one of why the severely disabled Member of your Lordships’ House sponsoring the Bill was not even contacted about the meeting, is therefore twofold. First, how do the organisations behind the meeting—the British Pregnancy Advisory Service, the Family Planning Association and the organisation for termination for abnormality, now named euphemistically as Antenatal Results and Choices—know that the 230 disabled babies aborted in 2015 after 24 weeks because of their disability had all been diagnosed with severe foetal abnormalities? The answer is that they do not know. The Department of Health has already said that the information is not held centrally, so none of these organisations knows this and neither does the noble Lord, Lord Winston. So secondly, why should they have insinuated and implicitly claimed this? The answer is in their overtly discriminatory agenda, which informs both this amendment and the noble Lord’s complete failure even to make contact with me.
This amendment is completely inappropriate and incompatible with the progress achieved on disability rights, which your Lordships’ House can be rightly proud of helping to secure. That is quite apart from the crass insensitivity to me, as a disabled and equal Member of your Lordships’ House, of the noble Lord’s hijacking of my disability equality Bill in order to advance a blatantly discriminatory eugenic agenda.
I understand why those who oppose my Bill are desperate to misrepresent it and to say that it is all about abortion, which it barely touches, and to ignore disability equality and disability rights before birth. Their message is stark and bleak. It is: “Let’s ignore the fact that these disabled babies are human beings, with an equal right to exist. Let’s reclassify them and call them foetal anomalies. Let’s go one better and call them serious foetal anomalies. What does it matter that the Department of Health collects no data centrally on so-called fatal foetal anomalies, as long as we can use the term to dehumanise?” Well this foetal anomaly, this proud Member of your Lordships’ House, is having none of it. I utterly reject this medical mindset that clings to the idea that a disabled baby is a medical failure to be eradicated through abortion. I beg no one for my equality. I know I have as much right as anyone to be alive.
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.
Amendment 1 withdrawn.
Consideration on Report adjourned.
House adjourned at 3 pm.