Abortion (Disability)

Lord Dodds of Duncairn Excerpts

Wednesday 9th April 2014 Commons Chamber

[Fiona Bruce]

The hon. Gentleman makes a relevant point.

Developments in the law, in medicine and in cultural attitudes have led me to introduce this debate. Because of the lack of clarification, the law is being applied in what one barrister has called a haphazard fashion. In 2007, the Select Committee on Science and Technology recommended that the Department of Health produce guidance that would be clinically useful to doctors and patients in this regard, and in response the Royal College of Obstetricians and Gynaecologists provided updated guidance in 2010, but there still seems to be a considerable difference in views and working practice about what comes within the law and what does not. That is concerning for parents, practitioners, law makers and disabled people, many of whom believe it is now time to review the framework within which this law operates.

It is hard to see the differing treatment of disabled fetuses and able-bodied fetuses as anything other than discrimination, about which disability groups are particularly concerned. Medical knowledge has changed radically since 1990, and even more since 1967, and there have been improvements in fetal medicine, including the ability to correct disabilities, even within the womb before birth.

[Mr Nigel Dodds (Belfast North) (DUP)]

I, too, congratulate the hon. Lady on bringing this important matter before the House. As the father of a disabled boy who had eight years of a wonderful life—he had spina bifida and hydrocephalus, he gave much love and everybody who knew him loved him greatly—I join her in her plea for an end to discrimination against children in the womb who are disabled. She makes an important point about developments in medical treatment, even within the womb, especially in the area of spina bifida.

[Fiona Bruce]

I thank the right hon. Gentleman for that intervention. He makes a pertinent point. Disabled children can enjoy life and can give great joy to their families. Even disabilities such as Down’s syndrome cover a very wide spectrum and we need to remember that. When mothers and fathers hear the news about a child’s diagnosis with fetal disability, it is important that they are given information about the spectrum and about their options.

We have seen changes in neonatal intensive care, palliative care, paediatric surgery, educational care and community support. Conditions that might previously have been grounds for abortion are now treatable, and attitudes towards people with disabilities have moved on greatly.

As has been mentioned, the Equality Act 2010 protects disabled people from being treated differently or discriminated against as a result of their disability. In light of all this medical, legal and cultural progress in our society, is it not now time to review the application of the legislation? If we do not consider a disabled person of inferior worth after birth, why do so before?

I want now to turn to a separate point. Many women feel steered, pushed or even rushed into having an abortion once it is determined that they might be carrying a disabled baby. Time and again I heard of that in a commission that I chaired in this House last year, which carried out a parliamentary inquiry into abortion on the grounds of disability. A copy has been placed in the Library. The commission’s committee comprised several Members of both Houses and all parties with different views on abortion but a common concern about the issue. We took oral and written evidence over several months from a total of 299 witnesses. Repeatedly, mothers told us that they had come, as one said,

“under huge pressure to have an abortion”,

because, as another said,

“this is the expectation of the health care professionals”.

Other mothers told us that they were not given support when making the decision, or they felt fearful that they would not be able to cope in future due to limited financial resources or community support in their locality. One said:

“My son (who is now eight years old) has Down’s syndrome. He was diagnosed in the womb at 35 weeks and I was actively encouraged to seek a termination by the doctor who gave me the diagnosis. I was given no support by my local hospital in my decision to keep my baby. I had to actively seek support elsewhere and I’m sure you will appreciate how difficult this was as I was heavily pregnant and in a vulnerable state.”

Parents may find that they are given only a leaflet on abortion, with plenty of advice on having an abortion, but no information specific to the condition that has been diagnosed, or information about what support they could expect if they kept the baby, or an alternative such as adoption. One said that

“choosing to keep the baby effectively meant I was on my own.”

Some mothers were made to feel irresponsible bringing a disabled child into the world on the basis that the child would be a drain on public resources. Many felt guilty about allowing their disabled child to be born. Recently we heard how distressed mothers were in Leeds general infirmary when they felt under pressure to abort babies with treatable heart defects. Was it ever Parliament’s intention that a treatable condition should come within the scope of ground E?

We also heard from a doctor, Mr Jayamohan, about particularly good practice such as counselling; expert support from trained clinicians; the provision of information about the child’s potential disability and treatment; the offer to speak to another family with a child with a similar condition; palliative care; and the opportunity to meet specialists as soon as possible after diagnosis, and so on, to enable parents to make their decision. One parent said:

“Guidelines and standards need to be set in place, which all hospitals need to meet, to ensure all families are given support on education of disabilities when faced with such a situation. To give a family a diagnosis of a disability and then to immediately follow that up with the advice that they can have a termination without any other information is simply not acceptable in a civilised society”.

Does the Minister agree that there is a need for better, more consistent, balanced information, trained counsellors, increased awareness of palliative care for newborns, and comprehensive information and support from the medical profession, whatever parents’ decision about the pregnancy? Would she consider developing best practice guidelines to encompass that?

We even heard of misdiagnoses. Parents told the commission about diagnoses that had proved to be incorrect. One said that

“we were advised my daughter be aborted up to birth due to the results of an antenatal test. The most serious result indicated Dandy Walker Malformation of the brain. In fact when scanned after birth there was no such malformation. Our daughter is now 6 years old and a happy normal child.”

Mr Jayamohan told the commission that of 32 post-mortems of late-stage terminations he had examined, two indicated that the diagnosis had been profoundly wrong. It is worth remembering that these are wanted babies, and parents who choose an abortion suffer grief from their loss. As one has said, it is a

“bereavement like any other person”.

Last year, more than half of ground E abortions were diagnosed by ultrasound alone, which I understand can carry a 10% to 15% rate of false positive diagnosis, meaning that of the 1,367 ground E abortions diagnosed by ultrasound in 2012, as many as 200 may have been falsely diagnosed. What steps are in place to help the Department assess the accuracy of prenatal diagnostics? Should not all be done that can be done to reduce the option of an abortion where it is not necessary or wanted? To that end, does the Minister agree that improvements need to be made in data collection, as there seem to be weaknesses, gaps and limitations in the collection of information on abortions that take place due to disability. One professor has described it as “very inaccurate”. We should be collating more information on the reasons for abortion beyond 24 weeks and analysing such data appropriately. We should consider a report to a coroner for all late-term abortions and carefully consider the need for post-mortems. There should be a national register for all congenital abnormalities, not just for Down’s syndrome. All this would help to improve future diagnosis and, I hope, lead to lower numbers of abortions.

Let me touch on the increasing concern about fetal pain. A new scientific consensus is emerging that babies in the womb can feel pain, even from 20 weeks—certainly, as seems incontrovertible, from about 26 weeks. Yet we permit disabled babies to be aborted at up to 40 weeks. One mother, when asked whether her child would feel pain, was told, “He’s going to feel it.” Is it because we believe that disabled babies do not feel pain, or because we do not care that they do, that we allow abortion at up to 40 weeks for them? During the passage of the Bill that became the Human Fertilisation and Embryology Act 2008, the age of viability was agreed at 24 weeks; it can of course be even younger. Why does this threshold not apply to the disabled?

The logical corollary is that society is saying that disabled babies who can survive outside the womb should not be allowed to do so. I cannot escape the conclusion that this is discriminatory. It simply cannot be right that, as a society that purports to respect disabled people, we act to prevent their very existence in this way. These are arguments open to anyone who values human life and deplores discrimination against disabled people.

My final request of the Minister is whether she would be good enough to take time after this debate to consider the 2013 parliamentary inquiry into abortion on the grounds of disability and respond to the recommendations within it, not all of which I have been able to touch on tonight for reasons of time.