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 a statement on the <i>Guardian</i> website on 31 October that an article on the approval of non-invasive prenatal testing (NIPT) had to be amended to correct a statement that the Nuffield Council on Bioethics had confirmed in July that no new ethical issues were raised by NIPT, what statements the Department of Health made to the <i>Guardian</i> or its reporters which led the <i>Guardian</i> to that understanding; whether the Department of Health understood this to be the case at the time of those statements; and if so, why.
Answered by Baroness Chisholm of Owlpen
The decision to accept the UK National Screening Committee’s (UK NSC) recommendation of the non-invasive prenatal testing was formally communicated as a matter of public record via the Guardian and Press Association, and subsequently reported by several media organisations, this is usual practice.
Following subsequent conversations with the Nuffield Council on Bioethics, an agreement was made to amend statements made to reflect their preferred wording. The Department did not contact the Guardian to amend this article.
Asked by: Lord Shinkwin (Conservative - Life peer)
Question to the Department of Health and Social Care:
To ask Her Majesty’s Government why the decision to approve non-invasive prenatal testing was revealed in an article in the <i>Guardian</i> on 29 October, including a comment from the Health Minister, before that decision was formally published on the government website on 2 November.
Answered by Baroness Chisholm of Owlpen
The decision to accept the UK National Screening Committee’s (UK NSC) recommendation of the non-invasive prenatal testing was formally communicated as a matter of public record via the Guardian and Press Association, and subsequently reported by several media organisations, this is usual practice.
Following subsequent conversations with the Nuffield Council on Bioethics, an agreement was made to amend statements made to reflect their preferred wording. The Department did not contact the Guardian to amend this article.
Asked by: Lord Shinkwin (Conservative - Life peer)
Question to the Department of Health and Social Care:
To ask Her Majesty’s Government whether they have reviewed the compatibility of section 1(1)(d) of the Abortion Act 1967 with Article 5 of the UN Convention on the Rights of Persons with Disabilities.
Answered by Baroness Chisholm of Owlpen
The Department has reviewed and is satisfied that section 1(1)(d) of the Abortion Act is compatible with Article 5 of the United Nations Convention on the Rights of Persons with Disabilities.
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 report by the Department of Health <i>Matching Department of Health abortion notifications and data from the National Down’s Syndrome Cytogenetic Register</i>, published in May 2014, and of the report by Eurocat <i>Misinterpretation of TOPFA data on website tables</i>, published in 2013, (1) what steps they have taken to end the under-reporting of abortions on the grounds of disability; (2) what evidence they have that under-reporting no longer happens; and (3) what sanctions they have developed to ensure that under-reporting does not recur.
Answered by Baroness Chisholm of Owlpen
We continue to carefully monitor reporting of abortions for fetal abnormality. Actions being taken include working directly with hospital staff to understand their specific challenges and help them find solutions to improve reporting of abortions. The Department, the Royal College of Obstetricians and Gynaecologists and the British Maternal and Fetal Health Medicine Society, will shortly be jointly writing to all clinicians in fetal medicine units, antenatal screening midwives, and associated administrative staff to remind all doctors involved in abortion care of their legal responsibility under the Abortion Act 1967 and Abortion Regulations 1991, to submit form HSA4 within 14 days of the termination. The letter also provides practical examples from hospitals the Department has worked with to improve their reporting processes.
In April 2015, Public Health England (PHE) established a new national congenital anomaly and rare disease registration service. We are working with PHE to compare reporting of abortions notified to the Chief Medical Officer and those reported through the register. Overall, between 2013 and 2015, there was an 18% increase in the number of reported abortions for fetal abnormality. While this increase may not solely be the result of increased reporting of these abortions, we do know that this is the case with some of the hospitals we have been working directly with.
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 response to the Royal College of Obstetricians and Gynaecologists' submission to the UK National Screening Committee concerning the case for making a rigorous analysis of the lifetime costs of caring for children and adults with Down's Syndrome.
Answered by Lord Prior of Brampton
The cost analysis considered by the UK National Screening Committee (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.
Thirty stakeholders responded to the UK NSC’s consultation, including the Royal College of Obstetricians and Gynaecologists. The UK NSC considered carefully all the responses to the consultation. However, as is standard practice there are no plans to respond to individual representations.
Asked by: Lord Shinkwin (Conservative - Life peer)
Question to the Department of Health and Social Care:
To ask Her Majesty’s Government whether the NHS is being, or will be, charged for the use of non-invasive prenatal testing technology by technology providers; and if so, what is their estimate of the annual cost to the NHS of such charges.
Answered by Lord Prior of Brampton
Public Health England (PHE) is working through the procurement and the evaluative roll out process for non-invasive prenatal testing (NIPT) for Down’s, Edwards’ and Patau’s syndromes. It is estimated that the test will cost £200-300 per test and PHE has estimated that approximately 10,000 tests will take place per year. The overall cost is expected to be cost-neutral with less invasive procedures being undertaken.
Asked by: Lord Shinkwin (Conservative - Life peer)
Question to the Department of Health and Social Care:
To ask Her Majesty’s Government when they expect the assessment by the Nuffield Centre for Bioethics of the ethical implications of the introduction of the new non-invasive prenatal test to be completed.
Answered by Lord Prior of Brampton
The Nuffield Council on Bioethics plans to publish the findings of its project on non-invasive prenatal testing in March 2017.
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.