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 21 November (HL3063) indicating that no equality impact assessment was conducted prior to the decision to introduce non-invasive prenatal testing on the NHS, what is the basis for the statement that they are satisfied that the screening programme is compliant with the Department’s obligations under the United Nations Convention on the Rights of Persons with Disabilities and that the programme is compliant with any obligations under the Equality Act 2010.
Answered by Lord Prior of Brampton
Non-invasive prenatal testing for Down’s, Edwards’ and Patau’s syndromes is an additional test to be offered as part of the current NHS Fetal Anomaly Screening Programme, and as it does not fundamentally alter the choices already available to women, we consider that there will be no impact on race, age, disability, gender reassignment sex or sexual orientation, religion or belief, marriage and civil partnership or pregnancy and maternity for the purposes of the Public Sector Equality Duty under the Equality Act 2010. The Department also considers that the programme is compliant with the Equality Act because it is not discriminatory and, with regard to the three elements of the Public Sector Equality Duty in s.149 of that Act, it has a neutral impact.
The Department considers that adding this optional alternative procedure to the current screening programme is compliant with the United Nations Convention on the Rights of Persons with Disabilities, as the test is intended to allow pregnant women to identify possible abnormalities in a foetus with more accuracy and in a less intrusive way than is possible through other screening procedures. Pregnant women will then be able to make a better informed choice in the light of the screening results.
All relevant equality duties will be further considered by Public Health England during the evaluative roll-out.
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 (HL3125), whether the public disclosure of a relevant interest is sufficient in all cases relating to appointments to the UK National Screening Committee; and if not, what types of interest would prevent an individual from being appointed or from continuing to serve on the Committee.
Answered by Lord Prior of Brampton
The UK National Screening Committee (UK NSC) requests that all members declare any personal or business interests which the public might reasonably think could influence their judgement as part of the activities undertaken for the UK NSC on the conflict of interest form and declaration.
The conflict of interest form further requests for the member to include any personal direct and indirect interests, including close family members and others living in the same household. The form is consistent with those of other scientific advisory committees and upholds the seven principles of public life – the Nolan principles. Members are able to express any changes in situations at any time and are directed to withdraw from any discussions where they feel they cannot act impartially.
Termination of membership from the UK NSC may arise where the Chair takes in good belief that the member has acted dishonestly or under duress to influence a recommendation.
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 extent to which the introduction of non-invasive prenatal testing is consistent with disability equality.
Answered by Baroness Chisholm of Owlpen
Non-invasive prenatal testing for Down’s, Edwards’ and Patau’s syndromes is an additional test to be offered as part of the current NHS Fetal Anomaly Screening Programme, and as it does not fundamentally alter the choices already available to women, we consider that there will be no impact on race, age, disability, gender reassignment sex or sexual orientation, religion or belief, marriage and civil partnership or pregnancy and maternity for the purposes of the Public Sector Equality Duty under the Equality Act 2010. The Department also considers that the programme is compliant with the Equality Act because it is not discriminatory and, with regard to the three elements of the Public Sector Equality Duty in s.149 of that Act, it has a neutral impact.
All relevant equality duties will be further considered by Public Health England during the evaluative roll out.
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.