Abortion (Disability Equality) Bill [HL]
Friday 21st October 2016
(8 years, 2 months ago)
Lords ChamberRead Full debate Abortion (Disability Equality) Bill [HL] 2016-17 Read Hansard Text Read Debate Ministerial Extracts
Lord Shinkwin (Con)
My Lords, as someone with a disability, it gives me immense pride to present to your Lordships’ House a Bill about disability rights and the fundamental principle of equality under the law. Noble Lords have treated me with nothing but respect as an equal since my introduction to your Lordships’ House just under a year ago. The reason for my Bill is that in respect to disability before birth the law does not recognise or accept that equality.
I wonder if I could extend an invitation to noble Lords to join me briefly on a journey, to put themselves in my place and to view the issues under discussion from a disabled person’s perspective. From this disabled person’s perspective, there is a stark anomaly, an inconsistency in the law, whereby discrimination on grounds of disability is both prohibited in law after birth yet, confusingly, actually enshrined in law at the very point at which the discrimination begins, at source, before birth. How do I know it is enshrined in law and that disability discrimination begins before birth? I know because the law says so. It is there in black and white in Section 1(1) of the Abortion Act 1967, which gives disability as one of the grounds for abortion:
“if two registered medical practitioners are of the opinion, formed in good faith ... that there is a substantial risk that if the child were born it would suffer from such physical or mental abnormalities as to be seriously handicapped”.
So by rights I should not be here. I should be dead. Indeed, more than that, according to the eugenic screening programme of our Department of Health, I would be better off dead because of serious handicap, to use the outdated terminology of the Act. I regard my Private Member’s Bill as a modest, reasonable and logical correction of that anomaly in the law to bring it into line with the thrust and spirit of existing disability discrimination and equality legislation.
Before I go into the detail of why I regard my Bill as a modest, reasonable and logical correction of that anomaly, I would like to place my Bill in context. I do so in the context of gratitude to the various clinicians who have treated me over the years without any discrimination, especially Hanus Weisl, a wonderful Jewish orthopaedic surgeon who rebuilt his life after a narrow escape from Nazi-occupied Prague in 1939 and rebuilt me as a child with brittle bones more times than I care to remember—how I wish I could thank him today—to my family and friends for only ever supporting me and never discriminating against me; to our Holy Mother for her non-discriminatory, sustaining love; and to your Lordships’ House for its tireless work to advance disabled people’s rights, as demonstrated by the pivotal role it played in securing the Disability Discrimination Act 21 years ago and the Equality Act, and for the authoritative report of the Select Committee, The Equality Act 2010: The Impact on Disabled People. In fact, I hope the new Minister for Disabled People, Penny Mordaunt, will look at its pragmatic recommendations again.
The second context in which my Bill must be placed is historical. I cannot seriously believe that noble Lords could ever have intended any law to discriminate to the eugenic extent that Section 1(1)(d) of the Abortion Act 1967 permits and of which a particular regime of the 1930s and 1940s would heartily approve.
Moreover, I struggle to understand how such eugenics can somehow be in any way less abhorrent 80 years later, especially given the supposed societal and attitudinal changes that have transpired since and the marvellous medical advances that have been made in that time. I also cannot believe that noble Lords could have intended that laws governing or giving rise to disability discrimination should be moving, in their effects, in such conflicting and contradictory directions as equality law is on the one hand and abortion law is on the other.
The inconsistency would be farcical if its impact were not so tragic. This is perhaps highlighted by how ridiculous it is that I should be a Member of your Lordships’ House, for whom a Health Minister recently professed in an email to me, no doubt sincerely, to have the greatest respect, yet were a younger, unborn version of me to be detected in the womb today, Section 1(1)(d) of the Act and his department’s search-and-destroy approach to screening would make me a prime candidate for abortion. How is that consistent with respect or equality?
It is in the context of such contradiction that I regard my Bill as modest, reasonable and logical. The logic I have just explained. I believe it to be modest and reasonable because its scope is so limited. This is borne out by the legal advice I have received by Hugh Preston QC that the practical effect of my Bill would be that, where there is a substantial risk of serious handicap, the mother’s ability to abort would be governed by the same criteria that apply in the case of any other foetus. Where the foetal handicap is such as to present a risk to the mother’s life or a risk of serious permanent damage to her, the mother would still be allowed by law to abort right up to birth.
Moreover, where the risk of injury to the mother is not so grave as to meet these criteria, the question of abortion would be governed by Section (1)(1)(a) of the Abortion Act—that is, abortion is permitted subject to there being a risk to the physical or mental health of the mother or her existing children greater than the risk of continuing with the pregnancy. In practice, in circumstances where a mother has concluded that she does wish to have an abortion, having decided that she does not wish to have a seriously handicapped child—to use the outdated wording of the Act—the advice I have been given is that one anticipates that this relatively low threshold would not be difficult to overcome, as indeed is the case generally for foetuses presenting no risk of serious handicap.
It follows that the practical effect of abolishing Section 1(1)(d) of the Act, which is what my Bill would do, is that any abortions by reason of disability would need to be carried out within the first 24 weeks, subject to the other sections that I have already mentioned—for example, where there is a risk of serious permanent damage to the mother or her life is at risk, in which case they will remain legally permissible until birth.
What is the legal difference between my Bill and the status quo? The difference in practice is modest; the difference in principle is huge. If a woman chose indirectly to discriminate on grounds of disability, the law would allow her to do so up to 24 weeks, but the principle of disability discrimination itself would no longer be enshrined in law, as I understand it.
Each of us has made different personal journeys to our Lordships’ House, but I submit that each of us has made that same essential journey through life: adulthood, childhood, infancy and before that the state of being an unborn baby, safe and secure in our mother’s womb. Only that is precisely the point, because for unborn babies whose disability is detected, a mother’s womb has become an increasingly dangerous place. I will share a few statistics with noble Lords. There were 230 terminations after 24 weeks on grounds of disability in 2015, and a 56% increase in the number of terminations on grounds of disability after 24 weeks over the last five years, between 2010 and 2015. There has been a 271% increase in the number of terminations on grounds of disability after 24 weeks over the last 20 years, 1995 to 2015. There were 3,213 terminations on grounds of disability in 2015, and a 68% increase in the number of terminations on grounds of disability over the last 10 years, 2005 to 2015. There were 689 terminations for Down’s syndrome alone in 2015 and a 43% increase in the number of terminations for Down’s syndrome over the last five years, 2010 to 2015. There was a 143% increase in the number of terminations for Down’s syndrome over the last 20 years, 1995 to 2015. Perhaps almost as chilling, there were 11 terminations for cleft lip or palate in 2015—an easily surgically rectifiable condition. I find the contrast between the 0.3% decline over the last decade in the number of overall abortions and the rise in the number of abortions on unborn babies detected with a disability alarming and deeply offensive.
As a disabled person, I am a prime candidate for abortion on the grounds of disability. I admit that I would like to say to the eugenicists in the Department of Health and those who obviously fail to appreciate the enormity of what is being perpetrated in our name:
“How dare you? How dare you wipe us out as mere conditions?”,
as the journalist Janice Turner so poignantly, if sadly approvingly, put it in the Times recently. My message to Janice Turner and all those who share such views is this: I am your equal. I will not be defined by my disability. I will be defined by who I am and by my contribution to your Lordships’ House and public service.
In conclusion, I know why they dare. They dare because they can, because discrimination in the form of abortion on grounds of disability is both lethal and legal, enshrined in law by Parliament and by your Lordships’ House. They dare not only because Parliament has legalised disability discrimination before birth or even simply legitimised it. No, we have gone one better than that and have allowed it to be normalised. I suggest that, collectively, we are in denial about the consequences of the choices we have made. But to deny equality here is inconsistent, incompatible and irreconcilable with the wonderful work that your Lordships’ House has done over many years to advance disability rights and equality. It is within that noble tradition of equality legislation that my Bill sits, and that is why I hope noble Lords will agree that my modest, logical and reasonable Bill deserves support and, crucially, government time in order that this corrosive, unjust and deeply discriminatory anomaly in the law is corrected, and equality is upheld in a society that is truly for everyone. I beg to move.
Lord Alton of Liverpool (CB)
My Lords, I support the Abortion (Disability Equality) Bill of the noble Lord, Lord Shinkwin, and congratulate him on bringing this timely piece of legislation to your Lordships’ House and on the eloquent way in which he introduced it. It is hard to overstate my admiration for his courage, his compassion and his integrity.
I hope noble Lords will forgive me for saying so, but I cannot help thinking that if the noble Lord’s Bill had set out to facilitate the assisted suicide of disabled people, it would have been on every national news bulletin. But because it seeks to end the taking of the life of a viable disabled baby, it is being treated very differently. That unwillingness to treat ethical issues with equal respect and impartiality is a disturbing sign of the times—but not as disturbing as the issues of equality, discrimination and the very right to life itself raised by the noble Lord’s important Bill
As the noble Lord observed, our legislation currently affords unborn disabled babies significantly less protection than that which is afforded those who are able bodied. Paradoxically, we will campaign and raise our voices for wheelchair ramps to be placed on public buildings but fail to uphold the innate right to life itself of the disabled person who uses that wheelchair.
Although the able bodied may be aborted up to 24 weeks, those who are disabled may be aborted up to birth. This inevitably implies that these unborn disabled babies are, as the noble Lord said, significantly less valuable than those who are able bodied. What message does this convey about the human dignity and the value —or, rather, the lack of value—of disability in society generally? As the law stands, it is a legal arrangement that invites and encourages discrimination—which is why, in 1990, I spoke and voted against it in another place when this provision was made.
At the time, I was given significant support by a woman called Ellen Wilkie, who had Duchenne muscular dystrophy. In her short 31 years, Ellen gained an honours degree in classics from Bristol University and was a published poet, worker, author, actress, radio and television presenter, journalist and musician. Her parents had been encouraged to abort her but had refused. I particularly commend her autobiography, A Pocketful of Dynamite, to anyone who contests her assertion that, “No one can say what a disabled person will be capable of”.
The arguments that Ellen Wilkie put at that time were set aside by Members of another place, and that legislation was incorporated into statute. It has had a very negative effect on the attitudes that people have. It is a throwback to a time when society had remarkably different attitudes to the inclusion and contribution of people with disabilities. We have moved on as a society and it is time that the law moved on, too. The Disability Rights Commission—now the Equality and Human Rights Commission—has, rightly, argued that this provision,
“is offensive to many people; it reinforces negative stereotypes of disability and … is incompatible with valuing disability and non-disability equally”.
As the We’re All Equal campaign has pointed out, statute insists that we must not discriminate against people with disabilities, but the 1990 provision runs contrary to both the spirit and the letter of the law.
The net effect of the noble Lord’s Bill would be that the 24-week time limit would apply to all babies, regardless of disability—it has no effect on other grounds detailed in the 1967 Abortion Act. It is hardly a secret that I oppose not just the time limits in our current legislation but the provisions that have led to 8 million nascent lives being prematurely ended in the United Kingdom. But this Bill is not about that; it is solely about a eugenic law that flies in the face of our usual protestations and tips the balance in favour of equality and against discrimination.
That the noble Lord’s Bill is desperately needed may be graphically seen in the abortion statistics provided by the department, which the noble Lord referred to. He specifically referred to the situation of people with Down’s syndrome. We live in a country where around 90% of all Down’s syndrome babies are routinely aborted. I know that I am not alone in having been deeply affected by Sally Phillips’s recent documentary, “A World Without Downs Syndrome?”, and the subsequent debate which the programme inspired. Rosa Monckton, mother of Domenica, born with Down’s, remarked that,
“Sally is entirely right about the relentless pressure to persuade mothers to ‘give up and start again’. I hate to think of what our family would have missed if we had gone down that path”.
What does it say about us and our society when amniocentesis and other tests are used as part of search and destroy mission with barely a murmur of dissent? Sally Phillips brilliantly highlighted the appalling pressure put upon mothers who receive a pre-natal diagnosis to abort their babies, but it also revealed from her own experience that living with Down’s is not a death sentence or incompatible with life. Paradoxically, in seeking to eradicate these wonderful individuals from the human race, it suggests that it is we who have the problem, not them. What does it say to the survivors—those who have been inconsiderate enough to avoid the perfection test and have somehow managed to slip through the net?
The noble Lord’s Bill challenges these negative stereotypes, but it also challenges casual attitudes to the law and to the requirement to keep scrupulous records. In 2014, a Department of Health review found evidence that there is significant underreporting of the number of abortions for some foetal disabilities. I hope that when the noble Baroness comes to reply to the debate, she will say what is going to be done to rectify this. I also have another question, arising from the remarks of the noble Lord, Lord Shinkwin. Although we were warned about it in the debates in 1990, not least by Professor John Finnis, who was rubbished at the time and accused of scaremongering, very few people realised that the provision would lead to abortion on babies with, as the noble Lord said, rectifiable disabilities such as cleft palate and hare-lip. What does the Minister have to say about that?
The shocking discrimination that we are witnessing through both what our law says and what it facilitates has devastating practical implications. I will conclude my remarks by returning to the pressures exerted on parents. The United Kingdom’s initial report on the UN Convention on the Rights of Persons with Disabilities said:
“Concerns were expressed around the approach to abortion in the UK, where disabled people have suggested a bias towards termination of pregnancies if a child is likely to be disabled”.
This view was backed up by evidence submitted to the 2013 independent parliamentary inquiry, which heard from a number of parents who said that, when it became apparent that their baby was disabled, their doctors expected them to abort. Among a number of contributions that I read, one parent said that her doctor became,
“short-tempered and abrupt with me because he clearly didn’t agree with my decision”.
Another said she felt pressured into an abortion and reported that her doctor,
“threatened that all medical help would be denied”.
The inquiry also heard from parents with disabled children. A representative of the British Academy of Childhood Disability said:
“Parents I have spoken to have said that Doctors treating their children with Down’s Syndrome for example (for heart and other conditions post natal) criticised them for not having abortions, saying their children will not have a good life”.
A parent, meanwhile, said:
“Parents who learn of their baby’s disability after birth are sometimes told that it’s too bad they didn’t find out earlier so they could have ‘taken care of it’”.
Another parent said:
“I have heard views expressed that suggest my child is seen as a drain on resources. A common view is that it was not fair on my other child to bring a disabled child into the world”.
When she comes to reply, I hope that the Minister will reflect for a little while on the department’s attitude to some of the alternatives to this that are available. I have read about and seen some of the extraordinary in utero operations that can take place now on disabilities such as spina bifida, and I have also read the work of Professor KJS Anand, one of the world’s leading experts on foetal pain, whose says that,
“it seems prudent to avoid pain during gestation”,
because of the danger that the unborn child will experience pain. Noble Lords should recall that babies have been born and lived from 23 weeks’ gestation, and this provision permits the ending of a life right up to and even during birth. What pain must it experience in this life-ending procedure?
All of this is very sad, so I am extraordinarily grateful to the noble Lord, Lord Shinkwin, for bringing forward his important equalities Bill. It is specific in its intention and specifically targeted at the issue of discrimination and inequality. I urge your Lordships’ House to give it your support at Second Reading today.
Baroness Nicholson of Winterbourne (Con)
It is with the greatest possible pleasure that I rise to support the Bill proposed by the noble Lord, Lord Shinkwin. It is a significant step forward in logical thinking and in the investigation of what we as a society feel about handicap, about handicapped people, about life ownership and about who should make the judgment on whether a person should live or die. Considered internationally, it is a topic and issue on which there is the widest possible variation, as there is with capital punishment. Curiously, this is exactly what this is—a form of capital punishment. It is a form of disallowing by decree the life of someone who is not the person in question.
I am aware immediately that under United Kingdom law a foetus has no personality. This is not the same as in some of our EU member state partners. In Germany, for example, the foetus has a right to life as a personality from the moment of conception. Even in Germany, a would-be mother, a pregnant lady, can have an abortion at any time up to 12 weeks, with nothing except a consultation with a medical professional and three days’ waiting time—but after 12 weeks nothing is allowed, unless the health of the mother is severely compromised. If I recall correctly, considerably earlier legislation in the United Kingdom gave the health of the mother as the key to the question of whether there should be an abortion on any grounds at all. It seems that we switched considerably when it was deemed that external judgments, including that of the mother but mainly those of medical professionals, on the health of the foetus itself, became the judgmental point, rather than the health of the mother.
A major or minor handicap is a difficult issue to determine. But, as the noble Lords, Lord Shinkwin and Lord Alton, have already declared and pointed out, some of the handicaps that were once deemed major are not so today, because there have been medical advances. There are ways in which either they can be ameliorated or the person can be adequately supported. We can look some of the ways in which mental handicap has been supported, for example with special assistance in schools. One hundred years ago it might not have been possible for someone with a certain level of intelligence to be educated and have a fulfilling life. Now, with special teaching and assistance and the attitude of society towards children with a mental handicap, it is amazing how flourishing those children and adults can become.
I myself feel very powerfully that the focus on Down’s syndrome as an impossible handicap, and the idea that the person with the handicap should be discarded, are intolerable. On the other hand, I would have great difficulty in supporting the birth, if the condition was known, of a foetus with Tay-Sachs disease, when the pain, grief and suffering is eliminated after about two and a half years, but the time up to that is agonising for the baby—and, of course, very difficult for the parents.
One has to think about the major issue that we are looking at with this Bill. The noble Lord, Lord Shinkwin, has based his argument on equality and equal opportunity. Everyone who is disabled is just as important and valuable as anyone else. I speak as someone who happens to be profoundly disabled from an in utero problem. I would very much have avoided being discarded before birth if I had had any opportunity to comment on it—but the problem that we are discussing involves making judgments on another potential human being who is not there to make the judgment themselves.
The attitude of society towards the mother is a critical issue. Perhaps we are guilty of hypocrisy here, because we claim that we have a wonderful attitude towards those who are disabled—that it is absolutely perfect. Did not we do the Paralympics? Were we not number one? Were we not special British people with a handicap—Paralympic brilliance? Yet here we are discussing the discarding almost at the moment of birth a potentially valuable human being who might go on to win a gold medal in the Paralympics. Is not there a hypocrisy here that needs significantly to be addressed and discussed? This is why I am such a keen supporter of the Bill, because the noble Lord, Lord Shinkwin, is tackling that very hypocrisy.
On the one hand, we are very proud of ourselves. Indeed, this House recently published a report on disability. I have to question whether it is fulfilling the goals and activities of that disability report, which was welcomed and lauded and supposed to be so wonderful. Are we doing it? I suggest that we not, in fact. It is time that we woke up to the fact that we are hypocrites on disability. This is a very clear example. I am referring not just to the House of Lords report, which I am criticising a little bit in terms of its implementation here, because it does not happen. The great hypocrisy is saying that we, the British, are special on handicap and are in advance of everybody else. Here we are with the Paralympics: those poor old Brazilians could not match us—not one tiny scrap, we think. Yet actually we are making sure that we have the fewest possible supposedly disabled citizens in our society.
Looking at some of the EU member states or across the globe, we find a vast disparity of views. I do not suggest that this is a topic that is very easy to discuss or one on which it is very easy to reach a solution, but I ask that we are honest with ourselves. While suggesting that we have the perfect Equality Act, that we are absolutely wonderful and that we are doing everything for the disabled, we are, on the other hand, allowing ourselves to discard all disabled people before they are actually born. We need to have a very careful look at the quality of life for those who are disabled and ask disabled people themselves why they find life so happy, exciting and worth having that they wish to still be here.
I was interested the other day to attend a round table with seven of the most important disabled societies in the UK. Disability and disabled people were being discussed and rather the same attitude prevailed. As I looked around the table, I could find only one person in that vast discussion who was actually disabled. I speak here as someone who, for a decade or so, chaired and ran ADAPT, promoting access for disabled people to arts premises and public libraries. We were the body responsible for adapting, to a certain extent, the House of Commons—and, sadly to a lesser extent, the House of Lords. Going around the UK and getting grade 1 and grade 2 listed buildings adapted was a tremendous experience and I was glad that we managed to do so much. However, it is interesting that, even today, the disabled are talked about but are not the ones who are giving the evidence.
It is with the greatest possible pleasure that I hope my few remarks will convince noble Lords that this Bill deserves not just full support but a wholehearted and wide societal discussion. This is our hypocrisy and it is something which noble Lords can very well address and resolve.
The Lord Bishop of Bristol
My Lords, I too am grateful to the noble Lord, Lord Shinkwin, for introducing this Bill. I understand that its focus is the principle of disability equality, not some underhand attempt to limit women’s access to abortion services. Noble Lords will, of course, have a variety of opinions on the ethics of abortion, but that is not, in principle, the focus of the Bill. It needs to be said that, in general, historically and indeed today, churches and other faith groups have always maintained a cautious approach to how the rights of women and the rights of the unborn child can somehow be maintained without, we hope, falling in to those who reside at the extremes of arguments around ethics on both sides of this debate.
Our debate today is effectively restricted to whether we ought to remove from the 1967 legislation one ground for permitting abortions to take place—specifically, that,
“there is a substantial risk that if the child were born it would suffer from such physical or mental abnormalities as to be seriously handicapped”.
Given the nature of the remaining grounds for abortion, it is unlikely—as the noble Lord, Lord Shinkwin, has implied—that if this Bill were to become law, the numbers of terminations of pregnancy would significantly decrease. The Department of Health, in its commentary on 2015 abortion statistics, implied that unquantified, but notable, numbers of abortions where foetal abnormalities were present were conducted on other grounds, most probably that of injury to the mental health of the pregnant woman. It is reasonable, therefore, to conjecture that if Section 1(1)(d) were to be removed from the Act, many such pregnancies could and would still be terminated under other existing provisions. That might be a matter for either reassurance or regret for noble Lords, but that particular discussion lies beyond our remit.
Why then do we seek to amend the Abortion Act? The answer is that the principle of disability equality is essential. It is essential for the welfare of individuals living with disability and it is equally essential for a society that wishes not only to protect but to celebrate the lives of those with disabilities. Many of us looked at our television screens just days ago and saw the joy of the crowd and of athletes, both able and disabled, in celebration of their achievements. There is something profoundly worrying in our current contradictory stance, which says that people living with disability are valued, respected and cherished, but that disability, in and of itself, represents a valid ground for abortion. In the end, there is a world of difference between an abortion taking place because a diagnosis of foetal disability adversely affects the mental health of a pregnant woman, and stating that foetal disability is, in and of itself, a ground for abortion.
As other noble Lords have mentioned, by way of example I should like to pursue one pertinent area further—that of the Down’s syndrome community. That there are challenges to be met in caring for a child with Down’s syndrome is undeniable. Without in any way seeking to minimise the impact of a diagnosis for Down’s syndrome on parents, my experience as a father of five is that there are challenges in caring for all children. However, neither would I want to minimise the joy that many parents receive from sharing their lives with Down’s syndrome children. The recent TV programme made by Sally Phillips made that point very clearly. For those noble Lords who are, like me, addicts of the TED talks, there is a very compelling talk on that website by a young disability rights campaigner, Karen Gaffney, who has Down’s syndrome. She is an Olympic gold medal-winning swimmer and has swum 16 times across San Francisco Bay—a feat which, I gather, none of the inhabitants of Alcatraz successfully managed.
Not only children but adolescents and adults with Down’s syndrome live valued and valuable lives, contributing greatly to the welfare of those around them. All of this is undermined by the continued existence on our statute book of a law that, in effect, states that Down’s syndrome is a ground for abortion. The current debate with regard to non-invasive prenatal testing, recently the subject of a consultation by the Nuffield Council on Bioethics, brings a new urgency to this issue. NIPT screens for genetic conditions such as Down’s syndrome can now be carried out by means of a simple blood test from the 10th week of pregnancy. This procedure is more accurate than the previously available early screening tests and does not carry the risk of miscarriage because of its invasive nature. If, either through the NHS or commercial companies, it becomes routine for pregnant women to undergo this form of screening, it could have extreme consequences, not only for the numbers of Down’s syndrome children to be born but for society’s attitudes, not just to those who are born with Down’s syndrome but to disabled people in general.
I congratulate the noble Lord, Lord Shinkwin, on bringing this issue to the attention of the House and I hope that, regardless of our no doubt diverse views on the ethics of abortion, we can unite to give the Bill a Second Reading in the interests of disability equality.
Baroness Stroud (Con)
My Lords, I am pleased to support the Abortion (Disability Equality) Bill and I commend my noble friend Lord Shinkwin for bringing it forward. As a parent and a friend to mothers who have disabled children, I appreciate that this is a hugely difficult and sensitive subject, whichever way one approaches it. However, the arguments about the value, contribution and importance of people with disabilities are just too important for me to remain silent.
The Bill introduced by my noble friend Lord Shinkwin accomplishes two very important objectives. First, it restores equality to the face of our legislation, as set out in the Abortion Act 1967. The issue of Section 1(1)(d) being discriminatory was indeed raised, as the noble Lord, Lord Alton, said, by the Disability Rights Commission soon after its creation in August 2001, when it stated that,
“it reinforces negative stereotypes of disability; and there is substantial support for the view that to permit terminations at any point during a pregnancy on the ground of risk of disability, while time limits apply to other grounds set out in the Abortion Act, is incompatible with valuing disability and non-disability equally ... In common with a wide range of disability and other organisations, the DRC believes the context in which parents choose whether to have a child should be one in which disability and non-disability are valued equally”.
When I first found that that clause existed in the Abortion Act, I was really surprised. I struggled to understand how a British society that seeks to value disabled people in every way and is a world leader on the issue of disability equality could behave so differently in its approach to a disabled baby in the womb, allowing abortion up to birth for disability. For every other situation, it is permitted only up to 24 weeks, unless the life of the mother is at risk.
In some ways even more troubling, however, is that disability, which is a protected characteristic in UK law, should be a basis for abortion at all. Lest anyone should be tempted to think that one can be discriminatory in a confined abortion context and not have it spill out into life beyond the womb, the evidence received by the Parliamentary Inquiry into Abortion on the Grounds of Disability in 2013 is less than reassuring. The representative of the British Academy of Childhood Disability stated:
“Parents I have spoken to have said that Doctors treating their children with Down’s Syndrome”,
as we have already heard,
“criticised them for not having abortions, saying their children will not have a good life”.
Another said:
“I have already come across people who view my choice to have my child as detrimental to the rest of society”.
That has certainly been my experience, as one of my friends went through this process. There are mutterings at the school gates, and people asking, “Why did they choose to have that baby?” gets into our attitude as a society. All those accounts are available in the inquiry’s report, which is in the House of Lords Library. I am afraid that this is an inevitable consequence of the law endorsing the idea that abortion on the grounds of disability is perfectly acceptable.
The second crucial objective that the Bill fulfils relates very specifically to the consulting room. One way in which the message of our current legislation is communicated is through those charged with responsibility for its implementation. If disability were not a ground for abortion, doctors would not mention it. However, the fact that it is means that doctors will, quite properly, inform a mother carrying a child with a disability that she should or could have an abortion. However, a significant number of parents say that that puts very real pressure on them to have an abortion. Again, the inquiry into abortion on the grounds of disability heard some very concerning evidence. One mother said that she felt she was treated differently because she was carrying a disabled baby. Another said that she experienced some disdain from medical professionals for deciding to keep her baby.
Indeed, you can see the effect of the law on decision-making and the approach to abortion by looking at the latest statistics. Between 2005 and 2015 the abortion rate in Great Britain, as we have heard, remained largely constant, decreasing very slightly by 0.3%, but between 2005 and 2015 the rate for abortion on grounds of disability up to birth rose by 68%. If this were any other group with any other protected characteristic, we would be seriously concerned.
The contrast between approaches to abortion of the able-bodied and abortion of the disabled is deeply concerning. It provides yet another reason why the Bill of my noble friend Lord Shinkwin should become law. Of course, the Bill will not mean that if a mother discovers at any point up to her last 21-week scan that her baby is disabled, the option of abortion will not still be open to her up to 24 weeks. It would obviously remain so.
As we have heard, that point was recently confirmed through a legal opinion issued by Hugh Preston QC on the Shinkwin Bill. It states that it is,
“succinct and limited in its scope. If enacted, it would remove s. 1(1)(d) of the Act completely. It follows that the practical effect of abolishing s. 1(1)(d) of the Act, is that any abortions by reason of disability will need to be carried out within the first 24 weeks subject to s. 1(1)(a) of the Act, unless there is a risk of serious permanent damage to the mother, in which case they will remain permissible until birth. Thus, abortions by reason of disability will remain permissible, but subject to the same safeguards as apply in any other case”.
Crucially, however, the provision of the Bill expressly removes discrimination from the face of our legislation.
Our abortion Act would send out the message that disabled lives are worthy of protection equal to that afforded to able-bodied lives. This legislation is overdue and I very much hope that the Government will take their equalities responsibilities in this matter seriously and support the Bill.
Baroness Tonge (Ind LD)
My Lords, debates about the availability of abortion are always harrowing, whatever side of the argument we take, and I congratulate the noble Lord, Lord Shinkwin, on a brilliant and very moving speech. This debate is doubly difficult because I feel that I am under pressure to say what the noble Lord wants to hear. No one can deny the amazing contribution that disabled people make to our lives in this country, and the insight and experience that they bring to us, even here in the House of Lords. That contribution is enormous.
However, I must give the other point of view. I must speak from the experience I have had as a GP and family planning doctor working with mothers, babies and children for most of my professional life, having, over many years, to advise and counsel women who find themselves pregnant in circumstances in which they cannot contemplate having a child to rear. Their voice must be heard too and I beg noble Lords to listen.
It is difficult enough when a woman has to make a decision early on in pregnancy, not knowing the development—normal or otherwise—of her foetus. It is much more difficult when a woman is carrying a foetus that has been shown to have a severe disability. Through no fault of the mother, this is often not definitely diagnosed until the later stages of pregnancy—hence the exceptions made in existing legislation. That is currently the problem: often the diagnosis cannot be confirmed and the decision cannot be made before 24 weeks.
In my experience, it is untrue and cruel to suggest that women who, in the later stages of pregnancy, undergo abortion because of foetal abnormality are doing it simply because they want a “perfect baby” and that they want to discriminate against disabled people. They have to take into consideration the effect on themselves and their ability to cope, as well as the ability and tolerance of their partner and family to cope in the future. It has to be recognised that a severely disabled child can—although not always—have a huge impact on existing children in the family, however much support is or is not given by the NHS and social services, and we know that that support is often deficient. These women have to make the decision, which is theirs alone, and I say that they have the right to decide.
There is no contradiction in my mind in campaigning for the rights of disabled people alongside the right of a woman to choose what she does with her own body. We have to accept that. A pregnant woman should not be used as a campaign tool for the rights of disabled people. We must also acknowledge that any unborn child needs a willing mother to nurture it and, if that mother is unable or unwilling to do so, we must respect that choice. To impose a duty on a woman to bear a child whom she did not want and give birth to that child after many weeks knowing what the baby’s condition will be is cruel and heartless and should not be done. I beg noble Lords to support the right of a woman to choose in this situation. For the time being, the law should remain as it is.
Viscount Bridgeman (Con)
My Lords, I am most grateful to my noble friend Lord Shinkwin for bringing forward this Bill. It is a courageous move. On the face of it, it restricts the options available to a mother faced with the appalling dilemma of knowing that she is carrying a seriously disabled foetus, and of having the time available for making a decision on abortion reduced under these proposals from the whole period of pregnancy to the first 24 weeks. I am very well aware that I speak after the noble Baroness, Lady Tonge, who articulated this issue so eloquently.
However, my noble friend Lord Shinkwin has seen this problem in a different light—a vision shared by most of the speakers today, and reinforced by his own personal experience. He is supported by a huge body of outside evidence from the UN Committee on the Rights of Persons with Disabilities, the Disability Rights Commission and the UK report on the UN Convention on the Rights of Persons with Disabilities. Furthermore, the parliamentary inquiry into abortion for disability specifically recommended the repeal of Section 1(1)d of the 1967 Act. Finally, there is the legal opinion prepared by Hugh Preston QC, who agrees that the Bill—as others have said—is succinct and limited in its scope. I am grateful to my noble friend for reading extracts from this opinion, which is very realistic. Incidentally, the document reminds us that there is a relatively low threshold for aborting a disabled baby under Section 1(1)(a) .
My noble friend recalled the statistics that revealed the large number of abortions on the grounds of disability that had taken place over the past five and past 20 years respectively. He also mentioned that there has been only a tiny decrease in overall abortion numbers of 0.32% over the period 2005 to 2015. My noble friend has significantly described the law as it stands as “abortion by stealth”, and most certainly not what was intended by the Abortion Act 1967 or the Human Fertilisation and Embryology Act 1990.
In conclusion, I congratulate my noble friend on his meticulous research and the compelling case he makes, given his truly personal experience, for the removal of Section 1(1)(d) of the Abortion Act, which this Bill proposes. I look forward to the Minister’s reply.
Lord Elton (Con)
My Lords, this is not a field in which I am expert but it is one on which one has to take a position. The noble Baroness, Lady Tonge, helpfully indicated the tensions involved in these cases. I congratulate my noble friend Lord Shinkwin on his logical and clear speech. He said that he believed the Bill was modest and reasonable. That is a perfect description of its progenitor—modest and reasonable. I congratulate him on the skill of his advocacy. I realise that other considerations are involved when it comes to the world in which the foetus will be born. Having listened to the speech of the noble Baroness, Lady Nicholson, I believe that the Germans have the right approach in that they know that foetuses are people, whereas we treat them as if they are not. If you put that into the equation, the balance comes down on the side of my noble friend. That is all I am qualified to say.
Baroness Hayter of Kentish Town (Lab)
First, I pay a heartfelt tribute to the noble Lord, Lord Shinkwin, for his living testimony that disability is as much in the mind as in the body. As others have said, as we have recently witnessed at the Paralympics, many of us so-called able-bodied are indeed rather weak imitations of those either born with, or who later acquire, a physical or mental disadvantage.
Despite the contribution that disabled people make to national life and their human right to equality of treatment, there are, sadly, still huge hurdles in the way of many of them being able to pursue a full, and indeed fulfilled, life. The House does not need me to enumerate the physical barriers, whether access to transport, buildings, facilities or the availability of aids or support required, or the social and psychological barriers—in the minds of others, of course—in terms of expectation or discrimination, to say nothing of the lack of adequate resources to meet their additional needs. Of course, all this is not helped by the Government’s welfare reforms, which I hope the noble Lord, Lord Shinkwin, continues to rail against within his own party. Indeed, just yesterday in the House the noble Baroness, Lady Deech, said that,
“the Government have not removed the barriers between disabled people and jobs. There is a lack of transport and an unwelcoming workplace. What disabled people need—and I hope that this will be favourable to the Minister—is that all buses should be accessible with audiovisual information and all the taxi provisions of the Equality Act should be brought into force”.
The noble Baroness, Lady Thomas of Winchester, noted:
“Up to 600 disabled people a week are losing their Motability cars because of the harsh PIP reassessment test”.—[Official Report, 20/10/16; cols. 2437-38.]
Therefore there remains much to do, in virtually every avenue of life, to improve the life chances and opportunities of disabled people so that they—and we—can benefit from them achieving their full potential.
However, I have to query whether a Bill, no matter how well intentioned, which could have the effect of forcing some 200 or 300 women a year to carry to full term a much-wanted and planned child, knowing it might not even see the light of day, or live just a few hours or days or face a life of pain and illness, is the best way of moving us further along the line of promoting equality and removing disability discrimination. The BMA, as well as the Royal College of Obstetricians and Gynaecologists, the Faculty of Sexual and Reproductive Healthcare, and the British Maternal and Fetal Medicine Society all oppose the Bill, which they describe as neither “patient nor woman-centred” and which they think is about restricting abortion care, while the Genetic Alliance stresses that,
“abortion on grounds of foetal abnormality is an important component of the options available to a woman who discovers that she has a pregnancy affected by a serious genetic condition”.
As it says, genetic conditions can often come to a couple with no advance warning. Where it is due to an autosomal recessive condition, they are likely to have discovered the risk only during the pregnancy—a shocking, disappointing, often devastating discovery, and frequently of a condition serious enough to cause stillbirth or severe, eventually lethal, neonatal illness. These are voices we should heed, as the noble Baroness, Lady Tonge, said, as they come from people who, day by day, deal with the women and children who would be affected by the Bill. In addition, I am sure that they deal with situations which I am certain the noble Lord, Lord Shinkwin, never meant to cover but which would be caught by his Bill.
We welcome the attention the noble Lord draws through the Bill to the continuing discrimination disabled people face, but this is not the way to improve their lives.
Baroness Chisholm of Owlpen (Con)
My Lords, I start by congratulating my noble friend Lord Shinkwin on securing time for the consideration of this Bill. We have had a very interesting and thought-provoking debate on a subject that remains a sensitive area of public policy and on which we have heard a range of strongly held views.
I should start by setting out the current legal position regarding abortion for foetal abnormality and the possible introduction of non-invasive pre-natal testing—NIPT—for Down’s and other syndromes. Under the Abortion Act 1967, women have early access to safe, legal and regulated abortion services. In each case, there should be careful and sensitive inquiry as to the reasons for requesting an abortion. These reasons will be particularly complex in the case of abortions for foetal abnormality, where the pregnancy is far more likely to have been planned and where the woman and her family will need information on and time in which to reach a decision with her doctor and other health professionals.
It is a sad reality that not every pregnancy goes to plan, and foetal abnormalities of varying degree of severity occur. Abortion is currently available where two doctors agree that,
“there is a substantial risk that if the child were born it would suffer from such physical or mental abnormalities to be seriously handicapped”.
In 2015, 3,213 abortions were performed under those grounds on women resident in England and Wales. Some 230 of those were performed at gestations of 24 weeks and over.
Antenatal screening enables practitioners and maternity teams to monitor the development of the foetus throughout pregnancy, and as technology continues to progress, the ability to detect foetal abnormalities increases. Non-invasive prenatal testing, also known as cell-free DNA, is a relatively new test that can identify pregnant women who have a higher chance of having a baby with certain genetic and chromosomal conditions, such as Down’s, Patau’s and Edwards’ syndromes. So far, non-invasive prenatal testing has been used by the NHS in special circumstances; for example, to detect genetic changes leading to specific skeletal abnormalities and certain forms of cystic fibrosis. In addition, non-invasive prenatal testing for Down’s, Patau’s and Edwards’ syndromes is currently available privately.
On 15 January 2016, the UK National Screening Committee announced its recommendation that non-invasive prenatal testing should be introduced as an additional test into the NHS foetal anomaly screening programme in England as part of an evaluation. That is because the evidence suggests that non-invasive prenatal testing is much more accurate than the current testing used in screening and can substantially reduce the number of pregnant women needing an invasive test, which carries a high risk of miscarriage. The introduction of non-invasive prenatal testing would not alter fundamentally the choices currently available to pregnant women who opt to take up the offer of screening. We want women to make informed decisions and access safe and appropriate tests. We are considering the recommendation from the UK National Screening Committee carefully and will make an announcement in due course.
Appropriate information and support should be offered to all women undergoing antenatal screening. Regardless of how an abnormality is detected or suspected, a woman has to be given time to understand the nature and severity of the condition so that she is able to reach an informed decision about how to proceed and whether to continue with the pregnancy or seek a termination.
It is an understatement to say that the decision to end what is usually a wanted pregnancy is extremely difficult and painful for most parents. The severity of the prognosis has a major bearing on their decision-making. Once an abnormality has been confirmed, arrangements should be made for the woman to see an expert who has knowledge about the abnormality and the options available. All staff involved in the care of a woman or couple facing a possible termination of pregnancy must adopt a non-directive, non-judgmental and supportive approach.
In addition, Public Health England, which takes the lead on the NHS screening programmes, recently met stakeholders from the Down’s Syndrome Association to understand where further improvements can be made to ensure that prospective parents get the right information and support throughout the screening process when making these very difficult decisions.
Sometimes, the diagnosis or prognosis does not give the whole picture of each individual case. In 1990, when the grounds for abortion were amended, Parliament agreed that doctors were best placed to make these decisions with the woman and her family. In 2010, the Royal College of Obstetricians and Gynaecologists published updated guidance on the termination of pregnancy due to foetal abnormality. This guidance concluded that it would be,
“unrealistic to produce a definitive list of conditions”,
and that,
“the seriousness of a fetal abnormality should be considered on a case-by-case basis, taking into account all available clinical information”.
I must make it clear that as they are matters of conscience, the Government maintain a neutral stance on abortion issues. We have had a good debate, and I look forward to hearing what my noble friend Lord Shinkwin has to say in response to the points that have been raised.
Lord Shinkwin
My Lords, I thank all those who have most kindly contributed to this debate for their constructive comments. Mindful that time is pressing, I hope that noble Lords who have contributed will excuse me if I am brief in my closing remarks.
I thank the noble Lord, Lord Alton, for drawing attention to the need for the media to pay more attention to ethical issues and treat them with a higher priority. I also agree that the legislation under discussion is a throwback to times that are, I am happy to say, long passed. We have moved on as a society and it is time that the law and Parliament catch up with that and challenge negative stereotypes.
I thank my noble friend Lady Nicholson for agreeing with me that the attitude of society has changed and that everyone is equal. I agree with her that it does seem rather jarring, if not hypocritical, to celebrate as a society the amazing achievements of our Paralympians and then, as I alluded to in my opening remarks, to tell them in effect that, by law, we would have killed you if we had had the chance and we believe that you would be better off dead. I am afraid that although none of us may articulate such thoughts, the subtext of the existing law signals exactly that message.
I thank the right reverend Prelate for his supportive remarks. I emphasise, with him, that this is not about the ethics of abortion. Indeed, it is perfectly true that it would be unlikely that the number of abortions would markedly decrease. But, as he rightly said, the principle of disability equality is essential if society wants to celebrate people with disabilities, as they did so recently in Trafalgar Square.
Moving quickly on to the remarks of my noble friend Lady Stroud, I think she made a very pertinent point when she said that most people—most Members of your Lordships’ House—are surprised to discover that not only is disability grounds for abortion, it is grounds for abortion up until birth. I hear the comments made by the noble Baronesses, Lady Hayter and Lady Tonge, but, with respect, I must say that it is important that we take on board the points made by my noble friend Lady Stroud about the pressure exerted on women by clinicians, nursing staff and legislation—by the societal norms constructed by the legislation passed by your Lordships’ House. It is the crucial importance of attitudes.
With regard to the remarks of the noble Baroness, Lady Tonge, I would simply say that either we believe in equality or we do not. George Orwell helpfully pointed out that no one can be more equal than others. That is exactly the point about the need for consistency in equality. I simply thank the noble Baroness for the overpowering clarity of her views.
On the remarks of my noble friend Lord Bridgeman, I cannot help but agree with his appropriate description of how the interpretation of the law passed by your Lordships’ House has inadvertently resulted in abortion on grounds of disability by stealth, and that that was not what this House intended.
I thank my noble friend Lord Elton for his supportive remarks. I agreed with the noble Baroness, Lady Hayter, when she opened her remarks by drawing attention to the contribution of disabled people. I would like to believe that I make a contribution to the business of your Lordships’ House; I certainly attempt to. But perhaps I could leave her with this point. If the law is not changed, how many Members of your Lordships’ House—perhaps this is even more pertinent in light of the debate that immediately preceded this one—do your Lordships think would be in this place in 40 years’ time if they had had an anomaly or disability detected before birth? I think we all know the answer to that question. The noble Baroness also mentioned the hurdles that disabled people face. I would simply say this to her: the biggest hurdle to society being truly for everyone is attitudes.
My noble friend the Minister restated the Government’s position, which I respectfully hope will change. I have to say that I am serving notice on Her Majesty’s Government that, should they proceed to introduce the new non-invasive prenatal test without the Health Secretary having met with me and with people with Down’s syndrome, their families and representatives to discuss their grave concerns—a meeting I requested as long ago as 8 March this year—I will be very seriously concerned. I urge my Government and my party not to disown their own Disability Discrimination Act and their commitment to ensuring that disabled people are heard on all the critical issues that affect them, which is consistent with the spirit of that Act.
I conclude by thanking all those who have contributed to this important debate and I ask the House to give the Bill a Second Reading.
Abortion (Disability Equality) Bill [HL]
Friday 27th January 2017
(7 years, 10 months ago)
Lords ChamberRead Full debate Abortion (Disability Equality) Bill [HL] 2016-17 Read Hansard Text Read Debate Ministerial Extracts Amendment Paper: HL Bill 16(a) Amendment for Committee (PDF, 51KB) - (25 Jan 2017)
Baroness Massey of Darwen
“Impact of this Act
(1) The Secretary of State must, at a time the Secretary of State considers appropriate, undertake a review of the impact of this Act on disabled children, their families and carers, and the provision of support services.(2) The Secretary of State must make arrangements for a report of the review to be laid before each House of Parliament.”
Baroness Massey of Darwen (Lab)
My Lords, my amendment is very simple. It simply seeks a review of the impact of the Bill on disabled children and their families and carers, and it seeks to ensure that support services are appropriate. I think it is a very sensible amendment; we should be reviewing what we do and taking great care to ensure that disabled people have the support they need. I thank the noble Lord, Lord Shinkwin, for giving us the opportunity to discuss his Bill. I am aware of the complexities and sometimes the anguish that surrounds prospective parents making a decision about abortion. I am also aware that the noble Lord, Lord Shinkwin, has very sensibly consulted on the Bill. I shall not go into disability rights. I have huge respect for people with disabilities and their families, who often achieve brilliantly. I am very grateful to the noble Lord, Lord Shinkwin, for meeting me this morning to talk about my amendment.
This past week I was at Strasbourg, at the Council of Europe. We discussed new technologies to prevent abnormality in the foetus, often from genetic problems. One of those present supporting further research described the dilemma of parents. He and his wife discovered that she was carrying a child with Down’s syndrome. They decided to allow the pregnancy to continue. My position on abortion is very simple: the final decision is the woman’s choice. I realise that such women now often discuss such a crisis with their partner; sometimes not. That should remain their prerogative. Abortion is not, of course, always linked to disability. The Bill would remove Section 1(1)(d) of the Abortion Act 1967, which allows for an abortion when,
“two registered medical practitioners are of the opinion … that there is a substantial risk that if the child were born it would suffer from such physical or mental abnormalities as to be seriously handicapped”.
If the Bill were to become law, parents would no longer have the option to end a pregnancy after 24 weeks when faced with a serious antenatal diagnosis, including in those cases where there is no realistic possibility of a pregnancy resulting in the baby surviving after birth. I think that is a real problem.
The Royal College of Obstetricians and Gynaecologists, a very learned body, has addressed the issue of foetal abnormality. Its report provides information to assist doctors and other health professionals in supporting women and their families when an abnormality is diagnosed. Since the last guidance was issued in 1996 there have, as we all know, been great advances in the detection of congenital abnormalities, resulting in early diagnosis and clearer indications for the offer of termination of pregnancy. The law relating to termination of pregnancy has not changed since 1990, although it has been tested in a number of specific cases. The 1967 Act, as amended, sets out the grounds and time limits for termination of pregnancy for foetal abnormality. Interestingly, there is no legal definition of “substantial risk”, or of “serious handicap”. An assessment of the seriousness of a foetal abnormality is considered on a case-by-case basis, taking into account all available clinical information.
Bodies have discussed this issue of foetal abnormality endlessly and it is now time to review what has been going on in relation to disabled people. Some may say that I am adopting a very clinical position. I am not. As I said earlier, I recognise that decisions on abortion may cause emotional stress, strain and anguish. My ethical stance, as I said, is that it is a woman’s right to choose. Therefore, I cannot accept many of the precepts of the Bill, much as I respect the noble Lord, Lord Shinkwin. My amendment simply seeks rational and objective evidence of the impact on disabled children to allow us to discuss such impact in a more analytical and considered way. I beg to move.
Lord Mackay of Clashfern (Con)
My Lords, the idea of having a review of the effect of legislation strikes me as a very good proposition in general, and in particular in relation to this Bill. Obviously, as the noble Baroness has explained, the precise consequences of the Bill, which I congratulate my noble friend on bringing forward, are not very easy to see, because there are overlapping provisions in the Abortion Act which might deal with some aspects at least of the particular circumstances that the noble Baroness referred to. In my judgment, this is a useful amendment and a similar principle might well apply in other legislation as well.
Lord Alton of Liverpool (CB)
My Lords, I agree with the noble and learned Lord and welcome the amendment from the noble Baroness. It strikes me that in this 50th anniversary year of the original legislation, which has led to some 8 million abortions, it would be a good thing if something like the amendment moved by the noble Baroness were attached to the original legislation. There is no sunset clause in it and it has never been reviewed, which I find staggering considering that 50 years have passed.
The amendment that the noble Baroness referred to, which was passed in 1990, extended the provisions of the 1967 legislation to enable the abortion of a baby with a disability, right up to and even during birth. As I pointed out at Second Reading in support of the Bill introduced by the noble Lord, Lord Shinkwin, this has led in some cases to abortion on grounds such as cleft palate, club foot and harelip. Indeed, 90% of all babies with Down’s syndrome, which the noble Baroness referred to, are now routinely aborted in this country. This is pretty close to eugenics and we need to consider much more deeply the issues that relate to the legislation governing the amendment that has been moved.
I sometimes think that instead of the tramlines on which we often find ourselves, with deeply held views—I respect the position that the noble Baroness takes; it is different from my own but I respect it—we need to go far more deeply into these questions. I am grateful, therefore, to the noble Lord, Lord Shinkwin, for giving us the opportunity to have this debate in your Lordships’ House.
Baroness Stroud (Con)
My Lords, I welcome and support the amendment. At Second Reading I made two points. First, the Bill removes discrimination from our legislation, as set out in Section l(l)(d) of the Abortion Act 1967. Secondly, the Bill’s crucial objective is to address what takes place in the consulting room. A significant number of parents say that they feel very real pressure to have an abortion when what they want is support. The noble Baroness’s amendment addresses that issue. I thank her and congratulate her on her amendment.
In 2015, 929 abortions [see Official Report, 30/1/17; col. 967.] were undertaken in England and Wales after 24 weeks under ground E. There may well be a need for additional support for parents should any of these children be carried to term in the future, rather than terminated within the 24-week timeframe, so this is a welcome addition to a very important Bill. But welcome though it is, it should not be argued that this causes a financial exposure for the Government. The Government are already required to provide for all these families, regardless of the choice they make. Having worked with the Treasury over a number of years, I know the danger is that it could view this as a financial exposure, which is not appropriate for a Private Member’s Bill. My point is that we already have responsibility for these families in caring for them and supporting them in any way and with any choice they make. I welcome the amendment, with that caveat.
The Lord Bishop of Durham
My Lords, I was unable to be present at Second Reading but my noble friend the right reverend Prelate the Bishop of Bristol spoke on this matter, welcoming the Bill, and I add my support. I also welcome the amendment because I believe that, as others have already said, such a review would be very helpful.
One reason has just been demonstrated, although the noble Baroness would not have known this at the time; that is, the figure she quoted for the number of abortions that took place in this category after 24 weeks is different from the one that I have been supplied with. That said, the number is not hugely different. The point is that a relatively small number of abortions take place in category E after 24 weeks. If I understand it correctly, the noble Baroness’s amendment would apply not just after the 24-week period but to the Act as a whole. That review would be very welcome because we do not know exactly what is going on.
The Bill is primarily about the rights of the disabled. It is really important that we move to recognising that if we believe viability is at 24 weeks, it is 24 weeks for all foetuses and none should be excluded from that. That is why I support the Bill as a whole.
Baroness Gale (Lab)
My Lords, I thank my noble friend Lady Massey for moving this amendment. It has been welcomed across the House, which is a good sign that we can have a really good debate on this. It is a sensible amendment as it asks the Secretary of State to,
“undertake a review of the impact of this Act on disabled children, their families and carers, and the provision of support services”,
with,
“a report of the review to be laid before each House”.
As other noble Lords have said, Acts of Parliament are seldom, if ever, reviewed, so no one knows whether or not they are working. This amendment will ensure that Parliament can at least understand how the Act is working.
My noble friend Lady Hayter said at Second Reading:
“Despite the contribution that disabled people make to national life and their human right to equality of treatment, there are, sadly, still huge hurdles in the way of many of them being able to pursue a full, and indeed fulfilled, life”.
She went on to comment on the lack of adequate resources to meet the additional needs of people with disabilities and made this very important point:
“Of course, all this is not helped by the Government’s welfare reforms”.—[Official Report, 21/10/16; col. 2558.]
There are approximately 12 million people living with disabilities, impairment or limiting long-term illnesses in the UK today. Of these, 5.7 million are of working age, 5.2 million are over 65 and 0.8 million are children. It is recognised that raising a child with disabilities costs up to three times as much as raising a child without disabilities. Twenty-one per cent of children in families with at least one disabled member are in poverty, a significantly higher proportion than the 16% of children in families with no disabled member.
The Government revealed in the Autumn Statement that they had set aside £360 million over six years to ensure that families with a disabled child will receive child disability tax credits in future. However, the payments will be backdated only to April, meaning that individual families may have lost out on entitlements totalling up to £20,000 over the past five years. This is a big loss. The recent UN committee investigation into the rights of disabled people in the UK said that a range of measures introduced since 2010, including the bedroom tax and cuts to disability benefits and social care budgets, had disproportionately and adversely affected disabled children. These are big cuts for people suffering from disabilities. Cuts to the employment support allowance work-related activity group will take more than £1,500 a year away from 500,000 disabled people—this from a fund that was designed to help people stay in or find work. These cuts will reduce support for disabled people by £650 million a year.
An analysis from the TUC found that the Government are years behind schedule on their manifesto commitments to halve the disability employment gap. At their rate of progress, it will take until 2030. The research forecast that by 2020 just over half of disabled people will be in work, which is 11% less than the Government promised. There is no doubt that disabled people are suffering, and will suffer, from the cuts made by government so there is much more to do in this field.
That is why the Labour Party is calling for a complete overhaul of the current system. We are undertaking an intensive consultation exercise, with disabled people at the heart of shaping our approach, through our disability equality roadshow. It is why I am grateful to my noble friend Lady Massey for bringing this important amendment before us, which allows us to highlight the difficulties that people with disabilities have to face now and in the future. Can the Minister take note of the needs of disabled people, which are much greater than those of non-disabled people, to find ways of giving a lot more assistance than they receive at present?
The Parliamentary Under-Secretary of State, Department of Health (Lord O'Shaughnessy) (Con)
My Lords, I congratulate noble Lords on the quality of debate on this amendment and recognise the broad welcome that it has received from all the speakers. I also join noble Lords in paying tribute to my noble friend Lord Shinkwin for bringing forward the Bill and raising the issue of disability rights and their effect on abortion, and in commending the noble Baroness, Lady Massey, on the clarity and conviction with which she made her case today.
Like all issues of conscience, the issue of abortion is one that divides opinions in ways that transcend the usual political boundaries because of the very personal reasons that parliamentarians have for their beliefs. It is for that reason that Governments remain neutral on such issues. The role of government in issues of conscience is to implement the law as decided by Parliament. On that basis, were this amendment to be carried and the Bill passed, the Government would of course carry out the proposed review in order to monitor the impact of the legislation, and we would indeed report to Parliament in due course.
The amendment proposed fits well with the overall determination of successive Governments to improve the lives of disabled people and their families. That has been a cornerstone of the approach of this Government and the previous Conservative-led Government. The Children and Families Act 2014 introduced a new statutory framework for local authorities and clinical commissioning groups to work together to secure services for children and young people who have special educational needs and disabilities. The support available to families includes early intervention programmes that aim to help the child develop, as well as providing support to the family from health visitors, midwives and others.
I also recognise that this amendment would improve the evidence base available for policymakers. There is of course a general desire in this Government to have more evidence-based policy-making, which the amendment would clearly aid. But, in the end, this is an issue of conscience, so noble Lords are free to decide their views according to their ethical or religious beliefs.
Baroness Masham of Ilton (CB)
My Lords, before the Minister sits down, are the Government supportive of the Equality Act?
Lord Shinkwin (Con)
My Lords, I thank all noble Lords who have spoken in support of my Bill, and I thank sincerely and in good faith the noble Baroness, Lady Massey of Darwen, for her amendment, which I not only accept but welcome as a logical extension to a logical Bill. It is a Bill that brings the law as it currently applies to disability before birth into line with how your Lordships’ House has already ensured that the law applies to disability after birth.
The amendment is about the impact of my Bill. But it is a simple, wonderful truth that I owe your Lordships’ House so much because of the impact of legislation that it has already passed. Without your Lordships’ House, a commitment to disability equality would never have been enshrined in law. Noble Lords will know that noble giants such as Jack Ashley and Alf Morris, with both of whom I had the privilege of working and whose spirits I invoke today, led the fight to outlaw disability discrimination. All my Bill does is to carry on their noble work, because it would allow us to outlaw disability discrimination where it begins—at source before birth. It is simply unfinished business. The amendment would help because it would measure the Bill’s impact on disabled children, their families and carers, and on the provision of support services.
When I think about the incredible role that strong women—women such as my own mother—play in the lives of their disabled children, anything that supports families and carers after birth and, crucially, on diagnosis before birth is welcome. Moreover, it stands to reason that such support services, be they provided by the state, charities, parents’ organisations or disabled people’s organisations, should be included in an impact review so that people can learn and disseminate best practice and, where necessary, ensure that improvements are made.
Abortion (Disability Equality) Bill [HL]
Friday 24th February 2017
(7 years, 9 months ago)
Lords ChamberRead Full debate Abortion (Disability Equality) Bill [HL] 2016-17 Read Hansard Text Read Debate Ministerial Extracts Amendment Paper: HL Bill 95-I Marshalled list for Report (PDF, 64KB) - (22 Feb 2017)
Lord Winston
“( ) 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.
Lord Lester of Herne Hill (LD)
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.
Baroness Tonge (Non-Afl)
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.
Lord Alton of Liverpool (CB)
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.
Baroness Massey of Darwen (Lab)
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.
Lord Mackay of Clashfern (Con)
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.
Baroness O'Loan (CB)
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.
Lord Brown of Eaton-under-Heywood (CB)
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—as 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)(d) 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.
Lord Swinfen (Con)
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?
Baroness Stroud (Con)
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.
Lord Elton (Con)
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.
Baroness Gale (Lab)
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 wants 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.
The Parliamentary Under-Secretary of State, Department of Health (Lord O'Shaughnessy) (Con)
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.
Lord Shinkwin
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 the 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.
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.
Lord Taylor of Holbeach (Con)
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.