Report on the Severe Fetal Impairment Abortion (Amendment) Bill

Committee for Health

Report on the Severe Fetal Impairment Abortion (Amendment) Bill (NIA 88 17-22).pdf (445.24 kb)

This report is the property of the Committee for Health. Neither the report nor its contents should be disclosed to any person unless such disclosure is authorised by the Committee.

Ordered by the Committee for Health to be published on 11 November 2021

Report: NIA 88/17-22 

Contents

Powers and Membership

The Committee for Health is a Statutory Departmental Committee established in accordance with paragraphs 8 and 9 of Strand One of the Belfast Agreement 1998 and under Assembly Standing Order 48.  The Committee has a scrutiny, policy development and consultation role with respect to the Department for Health and has a role in the initiation of legislation.

The Committee has power to:

• consider and advise on Departmental budgets and annual plans in the context of the overall budget allocation;
• consider subordinate legislation and take the Committee Stage of primary legislation;
• call for persons and papers;
• initiate inquiries and make reports; and
• consider and advise on matters brought to the Committee by the Minister of Health.

The Committee has nine members, including a Chairperson and Deputy Chairperson, and a quorum of five. The membership of the Committee is:

Colm Gildernew MLA (Chairperson)

Pam Cameron MLA (Deputy Chairperson)^[1]

Paula Bradshaw MLA

Gerry Carroll MLA

Alan Chambers MLA^[2]

Deborah Erskine MLA^[3]

Órlaithí Flynn MLA

Colin McGrath MLA^[4]

Carál Ní Chuilín MLA^[5]

Introduction

1. The Severe Fetal Impairment Abortion (Amendment) Bill (SFIAA Bill) was introduced in the Northern Ireland Assembly on 16 February 2021 and was referred to the Committee for Health for consideration in accordance with Standing Order 33 (1) on completion of the Second Stage of the Bill on 15 March 2021.

2. At introduction the Bill Sponsor, Paul Givan MLA made the following statement under section 9 of the Northern Ireland Act 1998: ‘In my view the Health and Social Care Bill would be within the legislative competence of the Northern Ireland Assembly.’

3. As a result of Paul Givan’s nomination to the office of First Minister on 17 June 2021, Christopher Stalford MLA assumed responsibility as Bill Sponsor for the SFIAA Bill.

4. The purpose of the two-clause Bill, is to amend the Abortion (Northern Ireland) (No. 2) Regulations 2020[⁶] (the 2020 Abortion Regulations) to remove the ground for abortion in the case of severe fetal impairment (SFI).

5. The 2020 Abortion Regulations make provision for regulating abortions in Northern Ireland (NI) and set out the circumstances in which an abortion may take place.  At present, the Regulations make provision for:

• the termination of a pregnancy up to 12 weeks without conditionality (Regulation 3);
• access to abortion services up to 24 weeks’ gestation in cases where the continuance of the pregnancy would involve risk of injury to the physical or mental health of the pregnant woman or girl, greater than the risk of terminating the pregnancy (Regulation 4);
• the termination of a pregnancy with no gestational limit in cases where there is an ‘immediate necessity’ to save the life, or to prevent grave permanent injury to the physical or mental health, of the pregnant woman (Regulations 5 and 6); and
• terminations in cases of SFI and fatal fetal abnormality (FFA) without gestational limit (Regulation 7).

6. Set out below is the applicable section (Regulation 7) of the 2020 Abortion Regulations and demonstrates how the SFIAA Bill would amend those Regulations.

Severe fetal impairment or fatal fetal abnormality

7.—(1) A registered medical professional may terminate a pregnancy where two registered medical professionals are of the opinion, formed in good faith, that there is a substantial risk that the condition of the fetus is such that—

(a)the death of the fetus is likely before, during or shortly after birth; or

(b)if the child were born, it would suffer from such physical or mental impairment as to be seriously disabled.

(2) In the case of a woman carrying more than one fetus, anything done to terminate the pregnancy as regards a particular fetus is authorised by paragraph (1) only if that paragraph applies in relation to that fetus.

7. Further information on the background and policy objectives of the SFIAA Bill can be found in the Bill’s accompanying Explanatory and Financial Memorandum.^[7]

Committee Approach

8. The Committee was briefed on the principles of the Bill by Paul Givan MLA and representatives from the organisation, Don’t Screen Us Out, at a committee meeting on 11 March.  The Minutes of Evidence of this, and all other evidence sessions relating to the Bill can be found at Appendix 2.

9. A public notice inviting written submissions on the Bill was placed in the Belfast Telegraph, Irish News and Newsletter.  In addition, the Committee invited views from a number of key stakeholders.

10. A total of 9,124 written submissions were received by the Committee to its call for evidence on the SFIAA Bill.  Of these, forty-three submissions were received from organisations and 9,081 were from individuals.  Links to the written submissions are included at Appendix 3 of this report.

11. The Committee also invited and received written briefing from the Department of Health (DoH) on the Bill.  This correspondence (of 21 September) is included in Appendix 5.

12. In addition, the Committee was also provided with supplementary papers and correspondence by a number of organisations to assist the Committee with its consideration and understanding of the emerging themes and issues discussed during evidence sessions.  This included responses the Committee received from the DoH, the Health and Social Care (HSC) Trusts, the Department of Justice (DoJ) and the Police Service of Northern Ireland (PSNI) to the Committee’s request for information on reported protests being held outside clinics providing early medical abortion (EMA) services.  All supplementary papers and correspondence provided to the Committee, including the correspondence on protests, are included at Appendix 5.

13. The NI Assembly Research and Information Service (RaISe) Bill paper on the Bill which also supported the Committee’s consideration of the Bill is included in Appendix 6.

14. During the period covered by this report the Committee considered the Bill and related issues at 15 meetings.  The related Minutes of Proceedings are included at Appendix 1.

15. At its meeting on 25 March 2021, the Committee agreed a motion to extend the Committee Stage of the SFIAA Bill to 19 November 2021.  The extension was sought to ensure that there was sufficient opportunity to take oral evidence and carry out robust scrutiny of the Bill while also ensuring there was time for the Bill to complete its passage before the end of the mandate.  The motion to extend Committee Stage was supported by the Assembly on 19 April 2021.

16. The Committee heard oral evidence from 22 organisations over ten briefing sessions on the Bill.  This included a session the Committee requested with the Chief Executives of the HSC Trusts.  A further two oral evidence sessions were held with the Bill Sponsor.  The Minutes of Evidence for these sessions are included at Appendix 2 and a list of witnesses who gave oral evidence is included at Appendix 7.

17. The Committee would like to place on record its thanks to all of the organisations and individuals who responded in writing and provided oral evidence on this Bill.

18. The Committee explored the issues raised in the evidence it received with the Bill Sponsor both in writing and in a further oral evidence session on 7 October 2021.  Correspondence from the Bill Sponsor responding to the issues raised in written submissions are included at Appendix 4 and the Minutes of Evidence for the session with Christopher Stalford MLA on 7 October are included at Appendix 2.

19. The Committee sought advice from the Examiner of Statutory Rules on whether there were any delegated powers in the Bill and if so, to provide delegated powers advice on this.  The Examiner confirmed that she was satisfied that the Bill as presently drafted did not provide for the delegation of legislative powers.

20. The Committee carried out informal deliberations on the Clauses of the Bill at its meeting on 14 October and undertook its formal clause by clause scrutiny of the Bill at the meeting on 21 October 2021.

21. At its meetings on 21 October and 4 November the Committee considered the content that it wished to see reflected in its Bill report and at its meeting on 11 November 2021, the Committee agreed its final report on the SFIAA Bill and ordered that it should be published.

22. The next two sections of the report set out the Committee’s consideration of the evidence it received and the Committee’s clause by clause consideration of the Bill.

Consideration of the evidence received on the Bill

23. This section of the report outlines the Committee's consideration of the evidence it received on the Bill. As outlined in the introduction of this report, the Committee received a significant volume of written evidence and considered a number of supplementary papers and additional correspondence to assist with its consideration and understanding of the emerging themes and issues. In addition, the Committee heard oral evidence from 22 organisations.

24. The Committee received 43 written submissions from organisations. Of these, 11 organisations indicated their support for the Bill, 27 stated they did not support the Bill and 5 organisations did not express a position on the Bill. Indeed, some organisations advised that they were unable indicate a position as the individuals/membership they represented held varied personal beliefs on the issue of abortion.

25. A further 9,081 written submissions were received from individuals. The overwhelming majority of the submissions from individuals stated their support for the Bill, with only 10 submissions from individuals stating their opposition to the Bill.

26. The Right to Life organisation provided guidance and access to template wording for individuals who wished to provide a submission to the Committee's call for evidence. The Committee received a total of 8, 972 submissions using some or all of the wording suggested by Right to Life. There were an additional 27 individual submissions submitted through the Right to Life website which provided personalised content. A further 82 submissions were received directly from individuals.

27. Much of the evidence the Committee considered provided views in relation to the wider subject of abortion, including views that reflected moral and ethical conviction and/or deeply held religious beliefs. At its meeting on 21 October, the Committee agreed that although not all of the evidence it received directly related to the specific provisions of the Bill, all of the issues and themes raised in evidence would be referenced in its Bill report.

14. The recurrent themes/issues identified in the written submissions and oral evidence related to:

• Disability;
• Human rights and legal obligations;
• Disparity with provision in the rest of the UK;
• The commissioning of abortion services;
• Implications for medical professionals;
• Screening, counselling and support;
• Protests outside healthcare premises providing abortion services; and
• Travel for abortion services.

28. These issues raised in evidence and considered by the Committee are set out in greater detail below.

Disability

29. The Bill Sponsor highlighted ^[8] that the SFIAA Bill seeks to ensure that the law on abortion is in line with other provisions in Northern Ireland that uphold the rights of those with a disability.

30. The Bill Sponsor's advised the Committee that the Bill seeks to address the message that people with a disability are less valuable than those without so that there is less discrimination against and stereotyping of those with disabilities. In his 21 June correspondence to the Committee, the Bill Sponsor stated that, "I hope to shift attitudes towards disability, which will in turn have a significant impact on the quality and length of life of people with disabilities and their families."

31. The impact of the current 2020 Abortion Regulations on the rights of disabled people was highlighted in many of the submissions received in evidence.

32. Supporters of the Bill argued that legislation that provides for a separate gestational limit for abortion on the grounds of non-fatal disability is discriminatory, and undermines disability discrimination legislation.

33. The Discrimination Act 1995, the Northern Ireland Act 1998 and the Disability Discrimination (Northern Ireland) Order 2006 (2006 Order) all aim to promote equality for disabled people, and provide protection for the rights of disabled people against all forms of discrimination. Supporters of the Bill argued that the current 2020 Abortion Regulations are at odds with the protections that the disability legislation provides, as the regulations permit the termination of a pregnancy where there is a substantial risk that the fetus would suffer from such physical or mental impairment as to be seriously disabled.

34. In addition, they expressed concerns that the 2020 Abortion Regulations perpetuate negative stereotypes around disability and imply that life with a disability is not worth as much as others. They argued that this not consistent with the duty to promote positive attitudes to disabled people that the 2006 Order places on public authorities.

35. Supporters of the Bill expressed further concerns that the 2020 Abortion Regulations will ultimately result in more terminations for non-fatal conditions such as Down Syndrome, and cite the example of Scotland, where abortion on the grounds of fetal disability has been legal for 30 years.

36. Some submissions suggested that there was a link between prenatal screening and postnatal disability discrimination, and that woman who receive a diagnosis of a fetal impairment are offered terminations but little by way of support for their disabled baby, if they choose to continue with the pregnancy.

37. However, opponents of the Bill cited evidence given in the Joint Oireachtas Committee meetings on the 8th Amendment on 23 November^[9], which stated that the number of babies with Down Syndrome born in the Netherlands has remained stable over the past few years, despite increases in the uptake of prenatal testing and the availability of abortion. They also pointed out that many women choose not to proceed with prenatal screening, even when it is known that they have an increased risk of a fetal impairment.

38. The report of the UN CEDAW Committee was cited in evidence by both supporters and opponents of the Bill.

39. Supporters of the Bill claimed that the current regulations are incompatible with the CEDAW recommendation that abortion be permitted on the basis of SFI "without perpetuating stereotypes towards persons with disabilities"^[10] . They argued that it is not possible to permit abortion on the grounds of SFI without perpetuating such stereotypes.

40. Opponents of the Bill argued that the rights of the disabled are not necessarily at odds with the rights of pregnant women, and that pregnant disabled women may need to rely on both. They further argued that the Bill itself places restrictions on the reproductive rights and freedoms of disabled people and pointed out that it cannot be assumed that all disabled people will be in favour of the Bill.

41. Some submissions referred to the joint statement by the CEDAW Committee and the Committee on the Rights of Persons with Disabilities ^[11] , which stated that using disability rights as an argument to oppose safe abortion is a misinterpretation of the Convention on the Rights of Persons with Disabilities, and that disability rights and gender equality are two components of the same human rights standard and should not be construed as conflicting. Organisations and individuals opposed to the Bill commented that a woman's decision to terminate her pregnancy on the grounds of a SFI should not be interpreted as an expression of disrespect to disabled people.

42. However, both supporters and opponents of the Bill called for a greater effort to be made to remove the stigma and discrimination faced by disabled people. A number of organisations suggested that greater respect for disabled people could be achieved through wider social and financial support for those with a disability.

43. In particular, one submission highlighted a number of steps it considered would have a direct impact on combating disability-related stigma, in line with the CEDAW Committee recommendations. These included: the provision of accurate information; support services and financial help to families with disabled children; training for medical personnel on the rights of the disabled; raising public awareness of disability; and the promotion of an inclusive society.

Human rights and legal obligations

44. The issue of human rights and legal obligations was raised early in the Committee's consideration of this Bill. In response to concerns raised regarding the legislative competence of the Bill, the Committee requested legal advice and was briefed by the Assembly's Legal Services at its meeting on 4 March 2021 on the process undertaken by the Assembly to determine the legislative competence of Bills.

45. The Northern Ireland Human Rights Commission (NIHRC) was also invited to provide its view on the compatibility of the Bill with Human Rights conventions. A copy of the response from the NIHRC is included at Appendix 5.

46. Much of the evidence considered by the Committee highlighted concerns regarding human rights standards and domestic and international legal obligations. There was a number of competing arguments made in the evidence that the Committee considered.

47. The submissions that support the Bill highlighted the following issues for the Committee's consideration:

• Regulation 7 of the 2020 Abortion Regulations is contrary to the non-discrimination provisions in the UN Convention on the Rights of Persons with Disabilities;
• The lack of legal clarity regarding the definition of 'impairment' or what 'seriously disabled';
• CEDAW emphasised that national abortion laws should not target and discriminate against people with disabilities;
• The CEDAW Committee report is non-binding;
• the European Court of Human Rights (ECt.HR) has consistently applied a wide 'margin of appreciation' to countries within its jurisdiction on the subject of abortion;
• The protection of children before birth, particularly those with disabilities is a legitimate and proportionate aim; and
• Local and national court rulings have found against a human rights argument for abortion in cases of disability and supported legal protections for preborn disabled babies (including UK Supreme Court judgement 2018).

48. The organisations that do not support the Bill made the assertion that the Bill, if implemented, would:

• Breach human rights standards as set out in the 2018 UN CEDAW Committee report;
• Breach obligations set out in The Northern Ireland (Executive Formation etc.) Act 2019;
• Narrow the minimum standard for reproductive rights in NI as set out in The Abortion (Northern Ireland) (No. 2) Regulations 2020; and
• May result in violations of Articles 3, 8 and 14 of the European Convention on Human Rights (ECHR).

49. Other human rights issues raised by the organisations who do not support the Bill included:

• the view that Regulation 11 of the 2020 Abortion Regulations introduces an element of re-criminalisation for medical professionals who perform a termination deemed to be outside the terms of the Regulations and point out that this re-criminalisation was not recommended by CEDAW;
• The Bill would create a situation whereby the 2020 Abortion Regulations would be amended to remove reference to SFI, yet the Secretary of State would concurrently be under a binding legal duty under the primary legislation to introduce Regulations to reinstate the provision and hence reverse the effect of the bill. The NIHRC stated that the Secretary of State may take the decision to not submit the Bill for Royal Assent;
• The view that the use of disability rights as an argument to oppose abortion on the grounds of SFI is a misinterpretation of the Convention on the Rights of Persons with Disabilities;
• A recommendation from the NIHRC that guidance is produced for NI by the DoH, in conjunction with regulatory and professional bodies, in order to clarify what is meant by 'severe fetal impairment' and support the informed decisions made by women and their clinicians; and
• General international human rights law applies from birth and not before.
  
  

Disparity with provision in the rest of the UK

50. A number of the submissions on the Bill pointed out that the removal of abortion services on the grounds of SFI, as proposed by the Bill, would create a disparity in the provision of abortion services with the rest of the UK as such abortions would remain lawful in Great Britain (GB).

51. This issue was also highlighted in the Assembly RaISe briefing paper on the Bill, which stated that disparity in provision would mean that women in NI would face more limited treatment options if facing a pregnancy involving SFI than women in the rest of the UK. The choice for the woman or girl concerned would be to carry the pregnancy to term or to travel to GB to secure treatment.

52. The RaISe paper went on to advise that this could also cause inequalities of access and advised that if the Bill is enacted as introduced, women and girls would need to be aware that free and lawful abortion provision in GB could be accessed in the case of SFI. As detailed in the RaISe paper, the ability to access reproductive health services is closely linked to socio-economic status and educational attainment and therefore the enactment of the Bill as introduced could cause inequalities in these areas.

53. In his correspondence to the Committee on 21 June, the Bill Sponsor asserted that the purpose of devolution is to allow different jurisdictions to shape their own laws in a manner that accords with the values of their respective electorates.

54. The Bill Sponsor advised that when the UK Government consulted on changing the law on abortion in NI, 79% of respondents did not support the Government's proposals, and made reference to the 2 June 2020 debate ^[12] in the Assembly in which MLAs voted in favour of a motion or an amended motion which rejected allowing abortion up to term on the basis of non-fatal disabilities. The Bill Sponsor asserted that this demonstrates the NI electorate's views regarding abortion diverge from the Regulations as made by the UK Government. The Bill Sponsor also asserted that the Bill would bring NI law into line with law in the Republic of Ireland (RoI).

Commissioning of abortion services

55. The Committee's consideration of the 2020 Abortion Regulations and the commissioning of abortion services predates the introduction of the SFIAA Bill. Indeed, the Committee corresponded with the DoH, the Executive Office, and the NIHRC on this matter. The Committee also commissioned a RaISe policy briefing paper and legal advice to assist its consideration of the 2020 Abortion Regulations in advance of these Regulations coming into effect on 31 Mach 2020.

56. Many of the submissions received by the Committee highlighted that full abortion services as provided for in the 2020 Abortion Regulations are not currently available in NI. Some non-commissioned EMA service provision has been available across the HSC Trusts but this has been limited and impacted by COVID-19 pressures.

57. In answer to a recent Assembly Question (AQ), the Health Minister confirmed that EMA services for terminations up to 10 weeks' gestation have been available across all HSC Trusts since April 2020. However, due to resourcing issues, services were temporarily paused in the Northern HSC Trust from 9 October 2020 until 4 January 2021, and in the South Eastern HSC Trust from 5 January 2021 until 1 February 2021. The Western HSC Trust EMA service has been paused since 23 April 2021, also due to staff resourcing issues which remain unresolved. Terminations beyond 10 weeks' gestation have not been available in any HSC Trust. ^[13]

58. The Health Minister also confirmed, in answer to an earlier AQ, that the DoH has received 1168 notifications of termination since the 2020 Abortion Regulations came into force on 31 March 2020. ^[14]

59. Following pre-action correspondence, the NIHRC decided on 30 November 2020 to initiate legal action against the Secretary of State, the Executive and the Department of Health for the failure to commission and fund abortion services in Northern Ireland. The case was heard on 26, 27 and 28 May 2021.

60. The judgment in this case ^[15], which was delivered on 14 October, declared that in the period between April 2020 and March 2021, the Secretary of State failed to comply with his duties under section 9 of the Northern Ireland (Executive Formation etc) Act 2019 to "expeditiously" provide women in Northern Ireland with access to high quality abortion and post abortion services. The Judge declined, however, to make an Order of Mandamus against the Secretary of State compelling him to make the services available. The Judge also dismissed a claim for judicial review against the Minister of Health and the Executive Committee.

61. The Westminster Government has consistently asserted that responsibility for commissioning abortion services in NI rests with the Health Minister and the Health Minister has consistently stated that the commissioning of abortion services is subject to the approval of the Executive. Indeed, in a statement ^[16] on the October 2021 High Court ruling, the Department of Health stated it would take the necessary time to consider the ruling in detail and further restated its position that the Department and Minister had received clear legal advice that NI Executive approval is required on the commissioning of abortion services.

62. In March 2021 the Secretary of State brought forward regulations to take powers to issue directions to relevant NI Ministers, departments and relevant health bodies to commission abortion services, consistent with the conditions set out in the 2020 Abortion Regulations. It is the Government's view, articulated in the Explanatory Memorandum ^[17] to the Abortion (Northern Ireland) Regulations 2021 (the 2021 Abortion Regulations), that "almost a year has passed since the Abortion Regulations came into effect, and progress should have been made by now. It is not sustainable for medical professionals to take forward service provision without any formal commissioning, support, relevant medical guidance, and funding. We have reached a point where it remains clear that the Department of Health will not move forward to make positive progress on this matter."

63. On 22 July 2021, the NI Secretary of State, Brandon Lewis issued The Abortion Services Directions 2021 ^[18] to the DoH, the Minister of Health, the Health and Social Care Board, and to the First and deputy First Minister, to commission and make abortion services available in NI as soon as possible, and no later than 31 March 2022. The direction is set out in a Written Ministerial Statement^[19] to Parliament.

64. The Society for the Protection of Unborn Children (SPUC) launched a legal challenge against the Secretary of State arguing that the 2021 Abortion Regulations are unlawful. SPUC also launched a further challenge against both the Secretary of State and the Minister for Health in relation to The Abortion Services Directions 2021. The challenges were heard in the High Court in Belfast on 4 and 5 October.

65. The NIHRC sought leave to intervene in this case, as it was relevant to its ongoing judicial review in respect of the failure to fund and commission abortion services.

66. In correspondence of 21 September, the Health Minister provided an update to the Committee on the commissioning of services. The Minister confirmed that preparatory scoping work to develop a commissioning model, which was paused as a result of the Department's COVID-19 response work, resumed in June 2021. The Minister further confirmed that the recommended service model will be subject to prior approval by the Executive, under the terms of the Ministerial Code, as well as business case approval and public consultation, in due course.

67. At its meeting on 4 November, the Committee agreed, by division, that it's report on the SFIAA Bill should call for the full implementation of commissioned services as set out in the Abortion (Northern Ireland) (No. 2) Regulations 2020.

Implications for medical personnel

68. The implications of the changes that the Bill will make for medical professionals was raised in the evidence provided to the Committee.

69. The lack of a clear definition of the terminology used in abortion law was highlighted as a major concern for clinicians. As outlined previously, abortion in NI is permitted where two medical professionals are in agreement that there is substantial risk that the condition of the fetus is such that (a) the death of the fetus is likely before, during or shortly after birth; or (b) if the child were born, it would suffer from such physical or mental impairment as to be seriously disabled.

70. In their responses to the Committee, the medical professions pointed out that there is no legal definition for terms such as 'substantial risk' or 'seriously disabled'. They argued that removing the grounds for abortion for 'seriously disabled' will mean that clinicians will have to judge whether or not a serious fetal impairment is likely to be fatal. The limited ability of doctors to determine the likelihood of a fatal outcome for particular diagnosis and to determine the difference between a 'severe fetal impairment' and a 'fatal fetal abnormality,' was noted.

71. Fetal medicine consultants drew attention to previous discussions with the DoJ in 2013 / 2014, where the Royal College of Obstetricians and Gynaecologists (RCOG) and fetal medicine specialists had highlighted that it is impossible to create a list of 'fatal' conditions.

72. Many of the submissions pointed to the experience of abortion provision in the RoI, in which difficulties around interpretation of 'fatal' diagnosis is reported. Abortion in the RoI is permitted for fetal anomaly only if the condition is likely to lead to the death of the fetus within 28 days of birth. A number of submissions made reference to a recent study which aimed to identify what congenital anomalies are responsible for perinatal death and whether they are classified as an FFA in accordance with criteria outlined in Irish legislation. This study identified that 'less than half of the congenital anomalies could be classified as an FFA; however, all were fatal. This acknowledges the complexity of these cases.'^[20]

73. Evidence submitted by the medical profession expressed concerns that, in the absence of a legal definition of terms such as 'severe' or 'fatal', doctors are vulnerable and at risk from prosecution if they err on the wrong side of the law. Concerns were expressed that doctors would focus on interpreting the law, rather than providing the best healthcare for the women with a diagnosis of SFI.

74. The example of the situation in RoI was again cited in this regard, where the uncertainty around whether or not a condition is fatal means that women with a fetal abnormality diagnosis often travel to GB for terminations. The view was expressed that the Bill would remove the legal clarity for clinicians that the 2020 Abortion Regulations provided, which, according to the British Medical Association (BMA), 'could have a chilling effect on the ability of doctors to make clinically indicated decisions in conjunction with their patients.'

75. The Committee heard concerns that some non-fatal conditions, such as Down Syndrome, as well as treatable conditions such as club foot and cleft palate, could be interpreted as SFIs under the current regulations, and therefore grounds for termination. Parents of children with Down Syndrome spoke of the joy that their children bring to them and expressed concerns that a culture of eugenics exists, particularly in England. In evidence to the Committee, they described the experience of parents of Down Syndrome babies, who were repeatedly offered terminations but offered no alternative pathways when they refused. They fear that, in the future, abortion will become the norm rather than a last resort.

76. In evidence to the Committee, medical professionals refuted that any clinician would consider conditions such as an isolated cleft lip and palate, club foot or cases of Down's Syndrome as grounds for abortion where there is not an associated significant structural fetal anomaly. The RCOG stated that the termination of a such a pregnancy would not happen in either NI, or in the units in GB that clinicians here liaise with. However, they acknowledged that bad practice can happen anywhere, and point to the importance of having good, strong, multidisciplinary teams to discuss cases and ensure good governance in units.

77. In addition, clinicians stated that women who decide to terminate their pregnancy are encouraged to have post-mortems, which may be of use to them in future pregnancies, and which also provide an audit process and a degree of oversight to the system.

78. In their evidence to the Committee, the Chief Executives of the HSC Trusts assured the Committee that they were satisfied with the clinical governance framework in place in the Trusts in relation to the current regulations.

79. The provision for medical practitioners to exercise conscientious objection in regard to termination of pregnancy was raised in evidence with the Committee. It was noted that the current legal framework implements the UN CEDAW recommendations and allows for a right to conscientious objection.

80. Fetal Medicine consultants referred to guidance which outlines how clinicians and their employers should proceed when a conscientious objection exists. They stated that this guidance was clear that doctors can practice in line with their personal beliefs, as long as this does not result in discrimination against or harassment of patients and as long as those patients are provided with access to necessary information and timely care. Doctors should ensure that their patients are aware of their conscientious objection, and ensure patients are provided with the necessary information to allow them to see other practitioners if they so wish.

81. The guidance also states that those with conscientious objections should be open with their employer and colleagues about this, and be able to discuss how they might practise in accordance with their beliefs without compromising patient care and without overburdening colleagues.

82. The Committee discussed the matter of conscientious objection with the Chief Executives of the HSC Trusts. In particular, Trusts were asked to comment on the NIHRC's recommendations on the operation of conscientious objection provisions for medical professions and the impact on services. In their responses, the Chief Executives agreed that all Trusts had provisions for staff to express conscientious objections, and that this did not currently impact on services due to small numbers; however, they acknowledged that this would have to be monitored in the future, if the service was to expand.

Screening and Counselling

83. The issue of prenatal screening and counselling was highlighted in much of the evidence submitted to the Committee and the Committee sought information directly from the DoH on the provisions for screening and counselling for SFA in Northern Ireland.

84. In his response (of 21 September 2021), the Health Minister advised that all pregnant women are offered a fetal anomaly scan between 18-21 weeks of pregnancy, to check for structural abnormalities and rare conditions. Woman who receive a diagnosis of SFI are referred to fetal medicine services for further assessment and follow-up tests. This may take several weeks in total, during which she will have access to antenatal midwifery support and counselling services through her HSC Trust.

85. The Minister further advised that the service commissioning project, currently being undertaken, will examine current service provision in this area and make recommendations to standardise and improve services where necessary, including consideration of the specific needs for those who are diagnosed with FFA or SFI.

86. The availability of first trimester screening in NI was raised by several organisations and the difference between the screening programme in NI and that in GB was highlighted. First trimester screening is not routinely offered in NI, unlike GB. In particular, it was noted that NI does not offer Non-Invasive Prenatal Testing (NIPT), which can detect chromosomal abnormalities from 10 -14 weeks. As a consequence, fetal abnormalities are diagnosed much later in NI than in the rest of the UK.

87. Those opposed to the Bill raised concerns that a 24-week limit on terminations for SFI will result in the unintended consequence of more terminations taking place between 20-24 weeks. Second trimester screening for fetal anomalies in NI generally takes place at around 20 weeks' gestation. It was argued that women who receive a diagnosis of SFI at this stage in their pregnancy will not have adequate time to fully understand the diagnosis, before the 24-week limit proposed by the Bill prevents them from seeking a termination in NI. Women may not take the time to avail of further diagnostic testing or seek further information and counselling, which could provide reassurance or help them make an informed choice. Instead, they may seek a termination as a matter of urgency, before the option is no longer available to them in NI.

88. Opponents to the Bill claimed that the 24-week limit will not prevent abortions on the grounds of SFI from taking place. Instead, women may seek a termination on other grounds, such as mental health. As a result, there will be no records regarding the proportion of fetal anomaly diagnoses that result in termination of pregnancy for fetal anomaly (TOPFA), and the records for NI regarding rare diseases will fall below the standards of those elsewhere in the UK. The option to travel to GB for a termination will also remain.

89. Some organisations commented that the lack of first trimester screening, coupled with the 24-week time limit proposed by the Bill, place women in NI at a disadvantage, compared to those in a similar situation in GB who are not subject to the same constraints. The NIHRC commented that the ECt.HR has already found violations of the ECHR where failure to provide genetic testing in time for an informed decision to be made, within the legal framework. Concerns were raised that the availability of private first trimester screening in NI could give rise to socio-economic inequities, and result in the Bill disproportionally impacting those who cannot afford to pay for private tests.

90. Many organisations called for the screening programmes in NI to be extended to include first trimester screening and NIPT, so that women are given as much information as possible about their pregnancies and are able to make informed choices. These organisations view screening as a necessary part of ante natal health care.

91. While some submissions argued that the current screening programme in NI is inadequate, others argued that screening is used for detection with a view to termination. They expressed concerns that women accept prenatal testing because it is expected of them and because they fear they will be stigmatized if they refuse. One organisation stated that, until recently, the only formal care pathway offered to women with a diagnosis of Down's Syndrome in England was a termination. They noted that literature produced by the NHS contains language such as the use of 'risk', or 'handicap' in relation to a Down's Syndrome diagnosis, and expressed concerns some medical personnel demonstrate a negative and out of date attitude towards Down Syndrome.

92. Fears were expressed that increased screening will lead to increases in termination of pregnancies where certain conditions are suspected or diagnosed, rather than to improvements in care for those born with these conditions. One organisation stated that routine offering of terminations to women who have a diagnosis of Down's Syndrome 'demonstrates a culture where termination has become a 'routine' response to congenital abnormality'.

93. Those in support of the Bill and those opposed to it both agreed that there was a need for improved counselling and support services for women with a SFI diagnosis.

94. Many responses described the sense of grief and loss experienced by woman who are often unprepared for a fetal anomaly diagnosis. Other responses highlighted the particular sense of loss and bereavement following a decision to terminate a much wanted pregnancy because of a SFI diagnosis. This was described as a 'unique form of bereavement which can be misunderstood and stigma-bearing'. Some organisations noted how the legal framework can impact on the woman's experience, by increasing a sense of social judgement, self-judgement and secrecy around a decision to terminate the pregnancy.

95. All organisations that provided commentary on counselling and support highlighted the importance of such provision regardless of whether a woman continues with her pregnancy.

96. The need for the provision of greater information on fetal anomalies following a diagnosis was also highlighted. This should include information on the help and support services available in the community for those with disabilities, and referrals to support networks of women with a similar diagnosis. One organisation suggested that 'states must ensure that pregnant people are offered voluntary access to non-directive, evidence-based information, including from medical providers who have been trained to discuss pregnancy-related diagnoses in a disability-sensitive manner that also respects women's autonomous decision-making and in a format that is accessible to them.'

97. Some responses emphasised the need for increased investment in counselling and support services, including greater financial support for children's hospices and longer term financial help for families who have a child with a disability.

98. The adequacy of counselling and support services provided by the HSC Trusts was raised by the Committee in oral evidence. Concerns were raised that a postcode lottery exists, with only the Belfast Trust offering psychological support in maternity cases.

99. In response, the Trusts referred to partnerships with a charity in providing early counselling, support, triage and onward referral for all individual women coming through to the health and social care trusts, and to the work of bereavement midwives.

100. The Trusts acknowledged the need for ongoing specialist training in counselling pre- and post-early medical abortion and ongoing pregnancy. As the regional centre for fetal medicine, the Belfast Trust provides a higher level of psychological support for woman with a diagnosis of a fetal abnormality. The Committee asked about the availability of genetic testing and counselling to support women in future pregnancies; in response, the Chief Executive of the Belfast Trust acknowledged that this service may need to be expanded as other services are commissioned.

Protests outside healthcare premises providing abortion services
101. During oral evidence sessions on the SFIAA Bill, the issue of protests being held outside healthcare premises providing abortion services was raised.

102. The Committee, whilst cognisant of the right to lawful and peaceful protest, was concerned that patients and staff may feel intimidated and harassed by some protesters and agreed to write to the DoH, the Department of Justice (DoJ), and the HSC Trusts to ask what measures were being taken to address this issue. The responses from these organisations can be found at Appendix 5.
103. The Minister of Health indicated his willingness to work with the Minister for Justice on this cross-cutting issue. The Minister also indicated that the development of a service specification model for the commissioning of abortion services was underway and that this work would take account of the need to provide these services in a way that that protects patients and staff from obstruction or intimidation.

104. In correspondence of 24 June, the Minister of Justice indicated that she had been exploring ways in which to ensure that people have the right to access health-care facilities providing abortion advice and services, without interference, while also protecting the right to protest. The Justice Minister went on to advise that whilst keen to make effective change in this area, provision for exclusion zones in would require both an appropriate legislative vehicle and Executive approval. The Justice Minister indicated that this matter would be discussed with Executive colleagues in due course.

105. The Justice Minister later confirmed (in correspondence of 3 August to the Justice Committee) that she had been unable to bring forward legislative proposals to provide for exclusion zones as planned and that this may not be able to be progressed in this mandate. The Minister did however restate that she was fully committed to seeing effective change in this area and intended to write to the Secretary of State with her concerns.

106. The HSC Trusts provided information on the protests that were taking place and the actions that each Trust was taking to mitigate the impact on staff and patients at premises in which non-commissioned EMA services were being provided. These measures included:

• Additional security presence;
• Security cameras;
• Changes to access procedures; and
• Moving services to alternative locations.

107. At a Bill evidence session on 8 July, the Chief Executives of the Trusts outlined their concerns in relation to the behaviour of some protestors. Following the briefing, the Committee agreed to write to the PSNI to ask what engagement it had undertaken with the Trusts in relation to protests.

108. The response from the PSNI recognised the right to protest in a peaceful manner and outlined that it has been engaging with the Trusts on this issue and will continue to work with the Trusts to better understand any specific concerns they might have.

109. The Committee also note the recent introduction of the Private Members' Bill, Abortion Services (Safe Access Zones) Bill to the Assembly on 13 September by Clare Bailey MLA. The Bill requires the Department of Health to establish 'safe access zones' around abortion clinics in order to protect the women using those clinics as well as the people who work in them.

110. Ms Bailey provided briefing on the principles of her Bill at the Committee's meeting on 7 October and the Bill passed second stage on Tuesday, 12 October.

111. The Committee will consider the issue of protests outside premises providing abortion services in further detail as part of its work to carry out the committee stage of the Private Members' Bill.

Travel

112. Submissions that opposed the Bill commented that the provisions of the Bill would not prevent terminations on the grounds of SFI from taking place, as women can avail of the option to travel to Great Britain to access services there.

113. In June 2017, the then UK Minister for Women and Equalities, Justine Greening, announced that women who are residents of Northern Ireland would be able access abortion procedures in England free charge. Following the announcement of the scheme, it was found that there was a large increase in the number of women travelling from NI to England and Wales for services in 2018.

114. However, these figures have since decreased by 4% from 1,053 in 2018 to 1,014 in 2019. Within this, the number of privately funded terminations fell from 45 (4.3%) in 2018 to 30 (3.0%) in 2019. ^[21]

115. The option to travel to Great Britain is seen by many as a way of 'exporting' the issue of abortion, and in evidence to the Committee, many submissions highlighted the difficulties associated with travel for the purposes of terminations.

116. Some referred to the fact that although funding is now available from the UK Government, there are other financial factors that prevent women from accessing services in Great Britain. These include the availability and costs of child care during the woman's absence, and potential loss of earnings, particularly for women in precarious employment situations.

117. Other personal factors preventing travel for terminations were highlighted, such as the difficulties faced by women in coercive and abusive relationships, those with uncertain immigration status, foreign students who have restrictions on their visas, those without passports or identification papers and girls under 18, and those with disabilities or medical complications may also be unable to access services in Great Britain.

118. The impact of COVID-19 and travel restrictions was also noted, with organisations commenting that this illustrates how external events can prevent a woman's access to abortion services.

119. The fact that not all women can travel for terminations is viewed by some as inequitable, and a denial of rights that exist elsewhere in the UK. In its evidence to the Committee, the NIHRC stated that that barriers to travel will be 'disproportionately faced by women and girls from rural areas, lower socio-economic groups, lone parents, those with disabilities, those in abusive relationships, minority ethnic groups and immigrants', which could result in violations of Articles 8 and 14 of the ECHR, if women are forced to continue a pregnancy against their will as they are unable to access abortion services.

120. In its written submission to the Committee, CEDAW expressed the view that 'forcing a woman - who is unable to travel due to limited resources - to carry a pregnancy to term against her will would amount to torture and inhuman and degrading treatment.'

121. Responses to the Bill made reference to the impact of travelling for a termination on a woman's physical and mental health. Many women who travel do so without the support of partners, friends or family at a time when this support is most valuable.

122. It was noted that women who travel do not experience the same continuity of care from doctors, including post- natal follow up, as they would if they were able to access services at home from their own medical team; they are also less likely to access support services such as bereavement care. Some respondents argued that denying women abortion in their home country creates a feeling of shame and stigma which causes further distress, particularly if a situation exists where some abortions are seen as permissible and some are not.

123. Respondents expressed concerns around the detrimental impact of travel on a woman's physical health, especially where a woman has complex medical issues during pregnancy, and does not receive proper post abortion follow up care. Concerns were also raised in relation to women who are not able to travel, and who resort to unregulated methods of termination which may be harmful to them.
124. The Committee heard how the repatriation of fetal remains was a source of additional stress and emotional trauma to women and their families. Women who seek a termination in Great Britain may wish to take the remains home for a number of reasons: burial, post mortem, genetic testing which may benefit them in future pregnancies, or as evidence in rape cases. Women must either arrange for a courier to carry the remains, or she must carry them herself; alternatively, she may leave them behind for testing.

125. The CEDAW Inquiry noted that:

"NI residents face difficulties in obtaining DNA analyses in England to establish genetic abnormalities in cases of FFA. Thus, they are forced to return with foetal remains to conduct thorough tissue testing to determine risk factors for future pregnancies. Testimonies revealed that the absence of any established protocols regarding the transfer of foetal remains has resulted in women resorting to undignified transporting practices, including in cooler boxes or hand luggage, at the mercy of airline personnel. Furthermore, no protocol on the reception of foetal remains by NI mortuaries exists. This situation recently led to the resignation of one of the only two NI paediatric pathologists."

126. At its meeting on 4 November, the Committee agreed, on division, to record its concern regarding women who are forced to travel to Great Britain to avail of healthcare services.

Clause by Clause consideration of the Bill

127. Having considered the written and oral evidence it received on the Bill, the Committee undertook its formal Clause-by-Clause consideration at its meeting on 21 October 2021.

128. The Clauses of the Bill were not supported by all Members of the Committee and the decisions on the Clauses were reached by division.

129. The related Minutes of Proceedings and Minutes of Evidence of the Committee's clause by clause consideration can be found at Appendix 1 and Appendix 2 respectively.

Clause 1: Amendment of Abortion on the grounds of disability

130. The Committee agreed it was content with Clause 1 as drafted.

Clause 2: Short title and commencement

131. The Committee considered a proposed amendment to Clause 2 by the Bill Sponsor to provide clarity to the commencement date:

Clause 2, Page 1, Line 10
Leave out 'force on the day on which this Act receives' and insert 'operation on the day after receiving'

132. The Committee agreed that it was content with the Bill Sponsor's amendment as drafted.

133. The Committee agreed that it was content with Clause 2 as amended. 

Links to Appendices

Appendix 1: Minutes of Proceedings

View Minutes of Proceedings of Committee meetings related to the report

Appendix 2: Minutes of Evidence

View Minutes of Evidence from evidence sessions related to the report

Appendix 3: Written Submissions

View the submissions from organisations and individuals related to the report

Appendix 4: Memoranda and Papers from the Bill Sponsor

View the memoranda and papers from the Bill Sponsor

Appendix 5: Other papers considered by the Committee

View the other papers considered by the Committee related to the report

Appendix 6: Research Papers

View the RaISe Bill paper on the Severe Fetal Impairment Abortion (Amendment) Bill

Appendix 7: Witnesses who gave evidence to the Committee

11 March 2021: Session 1

Paul Givan MLA, Bill Sponsor

Heidi Crowter, Don't Screen Us Out

Lynn Murray, Don't Screen Us Out

3 June 2021: Session 2

Les Allamby, Chief Commissioner, NI Human Rights Commission

Rhyannon Blythe, Director of Legal, Research and Investigations and Advice to Government, NI Human Rights Commission

Dr David Russell, Chief Executive, NI Human Rights Commission

3 June 2021: Session 3

Ruairi Rowan, Director of Advocacy and Policy, Informing Choices NI

Grainne Teggart, Northern Ireland Campaigner, Amnesty International UK

10 June 2021: Session 4

Michele McGrath, NI Abortion and Contraceptive Taskgroup

Karen Murray, Director, Royal College of Midwives NI

17 June 2021: Session 5

Dr Carolyn Bailie, Fetal Medicines Lead at Belfast Health and Social Care Trust and Chair of Royal College of Obstetricians and Gynaecologists NI Committee

Dr John Manderson, Fetal Medicines Consultant at the Ulster Hospital and representative of Royal College of Obstetricians and Gynaecologists

17 June 2021: Session 6

Grace Cahoon, Parent

Karen Jardine, Public Affairs Officer, Presbyterian Church in Ireland

Stephen Lowry, Parent

Dawn McAvoy, Co-founder, Both Lives Matter

Sarah Pike, Early Human Life Policy Officer, Christian Action, Research, and Education

David Smyth, Head of Evangelical Alliance in NI

17 June 2021: Session 7

Lynn Murry, Don’t Screen Us Out

Dr Elizabeth Corcoran, Chair of Trustees, Down’s Syndrome Research Foundation UK

24 June 2021: Session 8

Emma Campbell, Co-Convenor, Alliance for Choice

Dr Maeve O’Brien, Member of Alliance for Choice, Derry

24 June 2021: Session 9

Dr Alyson Hunter, Doctors for Choice NI

Danielle Roberts, Women’s Policy Group NI

Helen Stonehouse, Co-Convenor, Abortion Rights Campaign

8 July 2021: Session 10

Louisa Chalal; Member of the Committee on the Elimination of Discrimination against Women

8 July 2021: Session 11

Dr Cathy Jack, Chief Executive, Belfast Health and Social Care Trust

Jennifer Welsh, Chief Executive, Northern Health and Social Care Trust

Roisin Coulter, Chief Executive, South Eastern Health and Social Care Trust

Shane Devlin, Chief Executive, Southern Health and Social Care Trust

7 October 2021: Session 12

Christopher Stalford MLA, Bill Sponsor

Lynn Murray, Don’t Screen Us Out

Appendix 8: List of abbreviations and acronyms used in the Report

You may re-use this publication (not including images or logos) free of charge in any format or medium, under the terms of the Open Northern Ireland Assembly Licence. To find out more about this licence visit: http://data.niassembly.gov.uk/license.aspx.  This Report can be made available in a range of formats including large print, Braille etc. For more information, please contact:

Keith McBride, Clerk
Committee for Health
Northern Ireland Assembly
Room 419, Parliament Buildings
Ballymiscaw
Stormont
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Telephone: 028 90 520348
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Twitter: @niahealth

Footnotes

[8] Correspondence of 21 June 2021, available at Appendix 4.

[9] Dáil Éireann: Joint Committee on the Eighth Amendment of the Constitution.

[10] UN-CEDAW 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- report of the Committee, para.85(iii).

[11] OHCHR | Stop regression on sexual and reproductive rights of women and girls, UN experts urge

[12] Minutes of Evidence of the 2 June debate

[13] AQW 18803/17-22 Mr Keith Buchannan answered on 19 August 2021

[14] AQW 14601/17-22 Mr Christopher Stalford answered on 19 February 2021.

[15] Available: Application by The NIHRC for JR - In the matter of the failure by the SoS and others.pdf (judiciaryni.uk)

[16] Available: Department statement on High Court judgment | Department of Health (health-ni.gov.uk)

[17] The Abortion (Northern Ireland) Regulations 2021 (legislation.gov.uk)

[18] Available: SI/SR Template (publishing.service.gov.uk)

[19] Available: Written statements - Written questions, answers and statements - UK Parliament

[20] Power, Stacey et al. “The incidence of fatal fetal anomalies associated with perinatal mortality in Ireland.” Prenatal diagnosis vol. 40,5 (2020): 549-556. doi:10.1002/pd.5642

[21] Northern Ireland Termination of Pregnancy Statistics 2019/20 (health-ni.gov.uk)