Asked by: Lord Shinkwin (Conservative - Life peer)
Question to the Department of Health and Social Care:
To ask Her Majesty’s Government, further to the Written Answer by Lord Prior of Brampton on 22 November (HL3127), and in the light of the failure by the Secretary of State for Health to respond to the request by Lord Shinkwin of 8 March 2016 to meet with him, people with Down’s Syndrome and their representatives to discuss their concerns about the impact of the new non-invasive pregnancy test on abortion rates of unborn babies diagnosed with Down’s Syndrome, what is their response to that request.
Answered by Lord Prior of Brampton
Ministers plan to meet stakeholders in the coming months to discuss concerns about the introduction of new technologies such as non-invasive prenatal testing which have the potential to increase the safety of screening tests.
Asked by: Lord Shinkwin (Conservative - Life peer)
Question to the Department of Health and Social Care:
To ask Her Majesty’s Government, further to the Written Answer by Lord Prior of Brampton on 22 November (HL3127), how the UK National Screening Committee, in making its recommendation on 15 January that non-invasive prenatal testing be approved, formally considered the write up from the roundtable discussion held by the Nuffield Council on Bioethics on 18 January.
Answered by Lord Prior of Brampton
At its 19 November 2015 meeting, the UK National Screening Committee (UK NSC) recommended that non-invasive prenatal testing (NIPT) for Down’s, Edwards’ and Patau’s syndromes should be introduced as an additional test into the NHS Fetal Anomaly Screening Programme as part of an evaluation. The UK NSC held a three month public consultation on the GOV.UK website before making its recommendation. At its meeting in November 2015, the UK NSC reviewed all the responses to the consultation, including the ethical concerns raised before making its recommendation.
The Nuffield Council on Bioethics (NCOB) subsequently convened a roundtable in January 2016 to discuss clinical, ethical, social, legal and policy issues raised by recent developments in wider non-invasive prenatal diagnosis, testing and screening. The meeting was attended by 31 people, including healthcare professionals, academic researchers, policy makers, representatives of charities and patient groups, as well as members and officers of the UK NSC, including its ethicist.
Following the roundtable, the NCOB set up a working group in March 2016 to consider the ethical issues that would be raised by introducing NIPT into the National Health Service antenatal screening programme.
The UK NSC formally considered the NCOB’s write up of the roundtable at its meeting on 15 June 2016. In accordance with its terms of reference and as part of the ongoing evaluation the UK NSC will consider any significant new peer reviewed evidence, so will consider the report from the NCOB alongside any other new evidence when it becomes available.
Asked by: Lord Shinkwin (Conservative - Life peer)
Question to the Department of Health and Social Care:
To ask Her Majesty’s Government for which specific conditions terminations under section 1(1)(d) of the Abortion Act 1967, either alone or in conjunction with other paragraphs of subsection 1(1), were performed in each of the last five years for which figures are available; how many terminations were performed for each condition; and at which week of pregnancy those terminations were performed.
Answered by Lord Prior of Brampton
The data requested can be found in published format within the annual Abortion Statistics produced each year. Information is collected from the abortion notification for HSA4 which is submitted to the Chief Medical Officer. Due to the size of the data, the information requested is shown in the attached tables. For the year 2011 we only have data for gestations 24 weeks and over.
Asked by: Lord Shinkwin (Conservative - Life peer)
Question to the Department of Health and Social Care:
To ask Her Majesty’s Government what assessment they have made of the impact of section (1)(1)(d) of the Abortion Act 1967 on the mental health and wellbeing of people living with a disability.
Answered by Lord Prior of Brampton
No such assessment has been made.
Asked by: Lord Shinkwin (Conservative - Life peer)
Question to the Department of Health and Social Care:
To ask Her Majesty’s Government whether ministers have met (1) Premaitha Health, or (2) any other biotech firm which develops non-invasive prenatal tests, in the last 12 months; and if so, which ministers were involved in those meetings, when they happened and where they were held.
Answered by Lord Prior of Brampton
No Ministers at the Department have met with Premaitha Health. Ministers have regular meetings with biotech firms to discuss a variety of issues.
Asked by: Lord Shinkwin (Conservative - Life peer)
Question to the Department of Health and Social Care:
To ask Her Majesty’s Government why the Secretary of State for Health has not responded to (1) the letter of 8 March requesting a meeting with Lord Shinkwin and people with Down’s syndrome and their representatives to discuss concerns about the introduction of non-invasive prenatal testing (NIPT), and (2) the letter of 11 October, signed by over 900 people with Down’s syndrome and their families, detailing their concerns regarding the implementation of NIPT into the foetal anomaly screening programme.
Answered by Lord Prior of Brampton
The response to the noble Lord’s letter of 8 March resulted in a meeting with the former Parliamentary Under Secretary of State for Public Health (Jane Ellison) and the noble Lord on 14 June to discuss non-invasive prenatal testing for Down’s, Edwards’ and Patau’s syndromes. A response to the Don’t Screen Us Out campaign’s letter of 11 October was sent to the campaign group on 11 November 2016.
Asked by: Lord Shinkwin (Conservative - Life peer)
Question to the Department of Health and Social Care:
To ask Her Majesty’s Government what is their assessment of the submission by the Royal College of Obstetricians and Gynaecologists to the National Screening Committee concerning the case for a rigorous economic analysis to be made of the lifetime costs of caring for children and adults with Down’s syndrome.
Answered by Lord Prior of Brampton
The UK National Screening Committee (UK NSC) has recommended that non-invasive prenatal testing (NIPT) for Down’s, Edwards’ and Patau’s syndromes should be introduced as an additional test into the NHS Fetal Anomaly Screening Programme as part of an evaluation. NIPT presents a more accurate and safer screen for Down’s syndrome and reduces the need for diagnostic invasive prenatal testing, which carries a risk of miscarriage. Modelling suggests that NIPT, as an additional test in the current screening pathway will result in the number of women offered invasive prenatal diagnosis (IPD) tests reducing from 7,910 to 1,434, leading to a reduction in IPD-related miscarriage of pregnancies from 46 to 3 per year. The new test will be offered to pregnant women whose chance of having a baby with Down’s, Edwards’ or Patau’s syndromes is greater than 1 in 150.
As is standard UK NSC procedure, a three month public consultation was held on the UK NSC’s review of NIPT for Down’s, Edwards’ and Patau’s syndromes. 30 stakeholders responded to the consultation, including organisations representing the interests of people with Down’s syndrome and their families and the Royal College of Obstetricians and Gynaecologists. The core aim of the NHS Fetal Anomaly Screening Programme is to provide information and choice. The cost analysis considered by the UK NSC related solely to providing choice and did not take into account the lifetime costs of caring for children and adults with Down’s syndrome.
In forming its advice, the UK NSC did give consideration to its ethical implications, in addition to the ethical issues raised in consultation, and formally considered the write up of the roundtable discussion, which was held by the Nuffield Council on Bioethics in January 2016. The roundtable discussions examined the ethical issues relating to the use of NIPT; a note of the meeting held on 18 January 2016 is attached. The UK NSC also sought expert input from its members in obstetrics, midwifery, paediatrics, genetics, patient and public voice alongside advice from the Department and was satisfied that the NHS Fetal Anomaly Screening Programme is compliant with obligations under the UN Convention on the Rights of Persons with Disabilities and that the Programme is compliant with any obligations under the Equality Act.
Asked by: Lord Shinkwin (Conservative - Life peer)
Question to the Department of Health and Social Care:
To ask Her Majesty’s Government, further to the Written Answer by Lord Prior of Brampton on 23 March (HL 7087), why, prior to the decision to introduce non-invasive prenatal testing (NIPT), they did not (1) meet people with Down’s syndrome and their families to discuss their concerns, (2) conduct an assessment of the impact of the introduction of NIPT on people with Down’s syndrome and their families and communities, (3) conclude an ethical review of NIPT, and (4) meet obligations arising under the Equality Act 2010.
Answered by Lord Prior of Brampton
The UK National Screening Committee (UK NSC) has recommended that non-invasive prenatal testing (NIPT) for Down’s, Edwards’ and Patau’s syndromes should be introduced as an additional test into the NHS Fetal Anomaly Screening Programme as part of an evaluation. NIPT presents a more accurate and safer screen for Down’s syndrome and reduces the need for diagnostic invasive prenatal testing, which carries a risk of miscarriage. Modelling suggests that NIPT, as an additional test in the current screening pathway will result in the number of women offered invasive prenatal diagnosis (IPD) tests reducing from 7,910 to 1,434, leading to a reduction in IPD-related miscarriage of pregnancies from 46 to 3 per year. The new test will be offered to pregnant women whose chance of having a baby with Down’s, Edwards’ or Patau’s syndromes is greater than 1 in 150.
As is standard UK NSC procedure, a three month public consultation was held on the UK NSC’s review of NIPT for Down’s, Edwards’ and Patau’s syndromes. 30 stakeholders responded to the consultation, including organisations representing the interests of people with Down’s syndrome and their families and the Royal College of Obstetricians and Gynaecologists. The core aim of the NHS Fetal Anomaly Screening Programme is to provide information and choice. The cost analysis considered by the UK NSC related solely to providing choice and did not take into account the lifetime costs of caring for children and adults with Down’s syndrome.
In forming its advice, the UK NSC did give consideration to its ethical implications, in addition to the ethical issues raised in consultation, and formally considered the write up of the roundtable discussion, which was held by the Nuffield Council on Bioethics in January 2016. The roundtable discussions examined the ethical issues relating to the use of NIPT; a note of the meeting held on 18 January 2016 is attached. The UK NSC also sought expert input from its members in obstetrics, midwifery, paediatrics, genetics, patient and public voice alongside advice from the Department and was satisfied that the NHS Fetal Anomaly Screening Programme is compliant with obligations under the UN Convention on the Rights of Persons with Disabilities and that the Programme is compliant with any obligations under the Equality Act.
Asked by: Lord Shinkwin (Conservative - Life peer)
Question to the Department of Health and Social Care:
To ask Her Majesty’s Government, in the light of the position of Jane Fisher as both a member of the National Screening Committee (NSC) and Director of Antenatal Results and Choices which receives funding from five biotech companies which develop non-invasive prenatal tests, what consideration they gave to the possibility of a conflict of interest having affected the NSC’s recommendation that non-invasive prenatal tests be offered on the NHS, prior to the decision to adopt that recommendation.
Answered by Lord Prior of Brampton
Ms Jane Fisher is one of the patient and public voice representatives on the UK National Screening Committee (UK NSC). Members are appointed on to the UK NSC as individuals to fulfil the terms of reference of the committee, not as representatives of their particular professions, or their employer or any interest group. At the UK NSC’s meeting on 19 November 2015, Ms Fisher disclosed publicly that, “ARC has received unrestricted donations from biotechnical companies that provide non-invasive prenatal testing (NIPT) and a breakdown of donation has been provided to the UK NSC. ARC is a non-directive organisation which advocates individual choice. They do not promote any products or services. Money donated is put towards sustaining the service provided.” A copy of the minutes of the UK NSC’s meeting on 19 November 2015 is attached.
Asked by: Lord Shinkwin (Conservative - Life peer)
Question to the Department of Health and Social Care:
To ask Her Majesty’s Government whether they are taking action to reduce the number of late term abortions for reasons of disability; and if so, what.
Answered by Lord Prior of Brampton
Guidance from the Royal College of Obstetricians and GynaecologistsThe Care of Women Requesting Induced Abortion (Evidence-based Clinical Guideline Number 7) already makes it clear that women and their partners should receive appropriate information and support from a properly trained multidisciplinary team, who must adopt a non-judgemental approach regardless of the woman’s decision. This should include referral to other professional experts (including palliative care) and referral for counselling when this can help, as part of a co-ordinated package of care. A copy of the guidance is attached.