8Fatal foetal abnormality
The Working Group on Fatal Fetal Abnormality
129.We have heard evidence about the law in Northern Ireland prohibiting abortion in cases where there has been a diagnosis of fatal foetal abnormality. The Working Group on Fatal Fetal Abnormality said in its report that “Fatal fetal abnormality is an acceptable description of a diagnosis made, usually around 20 weeks gestation, of a fetal abnormality which will result in death in utero, at birth or shortly after birth” and that “Modern diagnostic resources allow for very accurate information to be provided to women regarding the condition of the fetus and its viability.”147
130.We took evidence from a woman in Antrim who told us that she had an early diagnosis of fatal foetal abnormality and if the law had been different, “you could very easily just go through with the abortion of a child with severe abnormalities.” She said this would be the case for vulnerable women who do not have the support that she had. However, at a later scan, the diagnosis changed and she now has a healthy daughter. She said; “I just hope that the law continues the way it is here in Northern Ireland because, like I said, women are very vulnerable and having this option, if it was different, for some women it would be easy to think about it.”148
131.One woman told us in a private session in Derry/Londonderry that at the 12-week scan she was told that there was a suspected diagnosis of anencephaly. Her consultant was on annual leave so she had to wait for a “horrendous” week.149 This witness went on to say that she knew that it was not an option to continue with the pregnancy, in part due to the impact on her other child; “the idea of having to continue, knowing that my little girl had already started talking about the baby in mummy’s tummy, to have to then put her through another six months of pregnancy and then try to explain to a two-year-old what it means, that the baby in mummy’s tummy is not going to be her little brother or sister.”150
132.This woman told us that she had a family history of very severe mental health issues and; “the idea of having to get up every day and go to work, as I am the main earner in my family, knowing what the implications for that were if I was not able to go to work every day” was another concern. Whilst waiting for the diagnosis to be confirmed, she had to make 27 separate phone calls to different hospitals and to BPAS, which has a specific phone line. She said:
Eventually, through an article in The Irish Times [ … ] I discovered [ … ] somewhere that I could go to be cared for, through an article on a Google search, because people here were not able to tell me, even though one of the conversations I had had with my team at [the Hospital] was they were almost expecting me to be grateful that they were able to even have a conversation about termination because previously they would not even have been able to have a conversation. For them, it had been a change. They were able to even talk about it, but for me, in that situation, to be expected to be grateful to be able to have a conversation when they were not able to help me is just cruel.151
133.During the passage of the Justice (No.2) Bill through the Northern Ireland Assembly in 2016 amendments to legalise abortion in cases of fatal foetal abnormality and where the pregnancy was the result of a sexual crime were rejected. Following this, the Ministers for Health and Justice agreed to establish the Working Group on Fatal Fetal Abnormality to consider “healthcare and the law in cases of fatal fetal abnormality (FFA)”.152 Membership of the group included; the Chief Medical Officer (chair), the Chief Nursing Officer, the Chief Social Services Officer, the Department of Health, the Departmental Solicitor’s Office and the Department of Justice.
134.The report of the Working Group was presented to Ministers in October 2016 but not published until April 2018. It concluded that:
- some improvements can be made to the care and support of women with a fatal fetal abnormality diagnosis through the proposals to improve the standard of care under the existing legal framework;
- there is a substantial body of evidence to underwrite the need for legislative change in relation to termination of pregnancy for fatal fetal abnormality;
- health professionals have identified a number of scenarios where they consider their duty of care to patients is being compromised; and
- there are women who face risks to their physical health, mental health including acute trauma and distress and possible financial hardship, because they cannot access the health service they require in this jurisdiction.153
135.The Working Group recommended that:
a change is made to abortion law to provide for termination of pregnancy where the abnormality is of such a nature as to be likely to cause death either before birth, during birth or in the early period after birth. ‘In the early period after birth’ means those circumstances where life might still be present after birth, but there is no medical treatment which would make the condition survivable and the only option is appropriate, specialised end of life care. Where a diagnosis has been made of such an abnormality, it is to be accepted that the continuance of such a pregnancy poses a substantial risk of serious adverse effect on a women’s health and wellbeing.154
Shortly after the report was finalised the Northern Ireland Assembly ceased functioning.
136.In his oral evidence, the Chief Medical Officer for Northern Ireland, Dr Michael McBride, told us that he has a professional responsibility to advise Ministers in relation to the circumstances that doctors find themselves in in Northern Ireland, and:
the fact that they do not feel that they can fulfil their duty of care or provide adequate care to meet the health needs of women with a diagnosis of fatal foetal abnormality who have decided that they cannot continue with a pregnancy. It is a very difficult set of circumstances that health professionals are being put in and I think it is the responsibility of those who legislate in any jurisdiction to ensure that that situation is addressed.155
137.Despite the clear recommendations of the Working Group, policy has not changed in two years since there was last a Minister in post. The Head of Criminal Policy in the Department of Justice (NI), Amanda Patterson, told us; “The position remains that we have to stay with that policy. We were a part of the interdepartmental group that looked at fatal foetal abnormality. The policy at that point was a recommendation that the law should be changed, but nothing has happened since then.”156
138.Since the Working Group reported, the Committee on the Elimination of Discrimination Against Women found that the UK is responsible for ‘grave violations’ of rights because the criminal law “compels women in cases of severe foetal impairment, including FFA, [and victims of rape and incest] to carry pregnancies to full term, thereby subjecting them to severe physical and mental anguish, constituting gender-based violence against women.”157
139.The Supreme Court found there to be a violation of rights under Article 8 of the European Convention on Human Rights in cases of fatal foetal abnormality. Lady Hale in her judgment said:
there can be no community interest in obliging the woman to carry the pregnancy to term if she does not wish to do so. There is no viable life to protect. [ … ] Travelling to Great Britain is even more difficult in such cases, as the problem is often detected comparatively late in the pregnancy, at 18 to 20 weeks, which leaves very little time to make the arrangements and there may be no counselling offered on what the options are. If the woman does manage to travel, not only will she have all the trauma and expense associated with that, but also serious problems in arranging the repatriation of the foetal remains.158
140.The Minister for Women and Equalities in the UK Government, Penny Mordaunt, told us of her concern about the experience of Denise Phelan who had been refused an abortion in Northern Ireland following a diagnosis of fatal foetal abnormality. The Minister told us that:
the law as it stands may have made provision—it could have made provision—potentially for her, but because of a combination of the chilling effect, because she then became too ill to travel and was not offered those services in Northern Ireland, she was faced with a situation where her baby died. She was then left with a period of five days before she was able to access the termination, during which time that foetus decomposed inside her, putting her own life in danger. It is absolutely clear that, even where you have the law allowing for the services that an individual needs, that is not happening and women’s lives are being put at risk.159
141.In relation to the Working Group’s recommendations, Maura McCallion of the Attorney General for Northern Ireland’s office told us in her evidence that the Attorney General has a concern about legislating for access to abortion in cases of fatal foetal abnormality on the basis of disability.160 She noted that the UN Committee on the Rights of Persons with Disabilities recommends not providing for selective abortion in relation to FFA. In its Concluding Observations on the UK’s compliance with the Convention on the Rights of Persons with Disabilities in 2017, the Committee, which oversees the Convention, said that it was concerned about “perceptions in society that stigmatize persons with disabilities as living a life of less value than that of others and about the termination of pregnancy at any stage on the basis of fetal impairment.” It recommended to the UK that it:
amend its abortion law accordingly. Women’s rights to reproductive and sexual autonomy should be respected without legalizing selective abortion on the ground of fetal deficiency.161
142.There has been no follow-up on the clear recommendations of the Working Group on Fatal Fetal Abnormality which was commissioned by two Northern Ireland Ministers in 2016. The Working Group’s recommendations included a change in the law to permit abortion when there has been a diagnosis of fatal foetal abnormality and it set out a range of legal mechanisms for achieving this.
143.The Chief Medical Officer for Northern Ireland, who chaired the Working Group, told us that doctors said they were not able to fulfil their duty of care towards their patients in the cases of pregnancies where there had been a diagnosis of fatal foetal anomaly. We accept the view of the Chief Medical Officer for Northern Ireland that guidance cannot remedy this and a change in the law is required.
144.The CEDAW Committee and the Supreme Court identified breaches of human rights obligations in cases where there has been a diagnosis of fatal foetal abnormality.
145.It is our view that nothing should stand in the way of a doctor’s duty of care to their patient and the conflict identified by the Working Group on Fatal Fetal Abnormality must be addressed. The Northern Ireland Executive should act to implement the recommendations of the Working Group which was commissioned by Northern Ireland Ministers, including legislating to permit abortion in these circumstances. In the absence of the Northern Ireland Executive, the UK Government must legislate as a matter of urgency to allow for access to abortion where there has been a diagnosis of fatal foetal abnormality.
147 Report of the Working Group on Fatal Fetal Abnormality, Department of Justice and Department of Health, 11 October 2016
152 Report of the Working Group on Fatal Fetal Abnormality, Department of Justice and Department of Health, 11 October 2016
153 Report of the Working Group on Fatal Fetal Abnormality, Department of Justice and Department of Health, 11 October 2016
154 Report of the Working Group on Fatal Fetal Abnormality, Department of Justice and Department of Health, 11 October 2016
157 Report of the inquiry concerning the United Kingdom of Great Britain and Northern Ireland under article 8 of the Optional Protocol to the Convention on the Elimination of All Forms of Discrimination against Women, Committee on the Elimination of Discrimination Against Women, 2018
158 In the matter of an application by the Northern Ireland Human Rights Commission for Judicial Review (Northern Ireland) Reference by the Court of Appeal in Northern Ireland pursuant to Paragraph 33 of Schedule 10 to the Northern Ireland Act 1998 (Abortion) (Northern Ireland), [2018] UKSC 27
161 Concluding observations on the initial report of the United Kingdom of Great Britain and Northern Ireland, Committee on the Rights of Persons with Disabilities, October 2017
Published: 25 April 2019