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The below Parliamentary question was asked by Lord Shinkwin on 2016-03-16.

To ask Her Majesty’s Government what (1) recent discussions they have had, and (2) consultation they have conducted, with (a) people with Down’s Syndrome, (b) families of people with Down’s Syndrome, and (c) Down’s Syndrome advocacy groups, about the National Screening Council’s recommendation that the NHS should offer a non-invasive prenatal testing technique, which could result in more abortions on the grounds of a Down’s Syndrome diagnosis; and whether they will publish any such consultation responses, and if so, when.

Lord Prior of Brampton

The UK National Screening Committee (UK NSC) commissioned a full review of the published scientific and cost evidence (systematic review) relating to Non Invasive Prenatal Testing (NIPT). Based on the evidence from the systematic review and the pilot study, the UK NSC ran a three month consultation that closed on 30 October 2015 seeking views on whether NIPT be offered as an additional test to women identified with a higher risk of carrying a baby with a chromosomal condition.

The consultation was sent directly to 38 organisations and responses were received from 30 stakeholders. Details of the evidence recommendation can be found in the document titled, ‘cfDNA Systematic Review Final Report.’ Details of the organisations contacted can be found in Annex A of the document titled, ‘cfDNA Cover Sheet’ and consultation responses can be found in the document titled, ‘Screening for cfDNA Compiled Comments.’ All three documents were published on the UK NSC website and copies are attached.

The UK NSC review included the early findings from the Reliable Accurate Prenatal non-Invasive Diagnosis study. However, the possible introduction of NIPT for Down’s, Patau’s and Edwards’ syndromes to the National Health Service foetal anomaly screening programme does not fundamentally alter the choices presented to prospective parents regarding entering the foetal anomaly screening programme or not, or in options and choices available when testing identifies a foetus with a syndrome. Therefore, no assessment was made of the impact of NIPT on the number of abortions, Down’s Syndrome community and medical professional and society’s attitudes towards people with Down’s syndrome.

As NIPT for Down’s, Patau’s and Edward’s syndromes is giving more accurate information than women already get, the UK NSC does not consider it to raise any new ethical issues. However, the Nuffield Council on Bioethics held a workshop in January 2016 to consider the ethical aspects of introducing NIPT.

The below Parliamentary question was asked by Lord Shinkwin on 2016-03-16.

To ask Her Majesty’s Government what assessment they have made of the findings of the RAPID study into cell-free DNA, non-invasive prenatal testing techniques, which projects that a further 102 babies with Down’s Syndrome will be detected every year if the screening is implemented; and what assessment they have made of the impact of such screening on the percentage of babies with a Down’s Syndrome diagnosis which is aborted, and of the prospective annual increase in the number of such abortions resulting from those detections.

Lord Prior of Brampton

The UK National Screening Committee (UK NSC) commissioned a full review of the published scientific and cost evidence (systematic review) relating to Non Invasive Prenatal Testing (NIPT). Based on the evidence from the systematic review and the pilot study, the UK NSC ran a three month consultation that closed on 30 October 2015 seeking views on whether NIPT be offered as an additional test to women identified with a higher risk of carrying a baby with a chromosomal condition.

The consultation was sent directly to 38 organisations and responses were received from 30 stakeholders. Details of the evidence recommendation can be found in the document titled, ‘cfDNA Systematic Review Final Report.’ Details of the organisations contacted can be found in Annex A of the document titled, ‘cfDNA Cover Sheet’ and consultation responses can be found in the document titled, ‘Screening for cfDNA Compiled Comments.’ All three documents were published on the UK NSC website and copies are attached.

The UK NSC review included the early findings from the Reliable Accurate Prenatal non-Invasive Diagnosis study. However, the possible introduction of NIPT for Down’s, Patau’s and Edwards’ syndromes to the National Health Service foetal anomaly screening programme does not fundamentally alter the choices presented to prospective parents regarding entering the foetal anomaly screening programme or not, or in options and choices available when testing identifies a foetus with a syndrome. Therefore, no assessment was made of the impact of NIPT on the number of abortions, Down’s Syndrome community and medical professional and society’s attitudes towards people with Down’s syndrome.

As NIPT for Down’s, Patau’s and Edward’s syndromes is giving more accurate information than women already get, the UK NSC does not consider it to raise any new ethical issues. However, the Nuffield Council on Bioethics held a workshop in January 2016 to consider the ethical aspects of introducing NIPT.

The below Parliamentary question was asked by Lord Shinkwin on 2016-03-16.

To ask Her Majesty’s Government what estimate they have made of the increase, if any, in abortions for disability of implementing new non-invasive prenatal testing techniques.

Lord Prior of Brampton

The UK National Screening Committee (UK NSC) commissioned a full review of the published scientific and cost evidence (systematic review) relating to Non Invasive Prenatal Testing (NIPT). Based on the evidence from the systematic review and the pilot study, the UK NSC ran a three month consultation that closed on 30 October 2015 seeking views on whether NIPT be offered as an additional test to women identified with a higher risk of carrying a baby with a chromosomal condition.

The consultation was sent directly to 38 organisations and responses were received from 30 stakeholders. Details of the evidence recommendation can be found in the document titled, ‘cfDNA Systematic Review Final Report.’ Details of the organisations contacted can be found in Annex A of the document titled, ‘cfDNA Cover Sheet’ and consultation responses can be found in the document titled, ‘Screening for cfDNA Compiled Comments.’ All three documents were published on the UK NSC website and copies are attached.

The UK NSC review included the early findings from the Reliable Accurate Prenatal non-Invasive Diagnosis study. However, the possible introduction of NIPT for Down’s, Patau’s and Edwards’ syndromes to the National Health Service foetal anomaly screening programme does not fundamentally alter the choices presented to prospective parents regarding entering the foetal anomaly screening programme or not, or in options and choices available when testing identifies a foetus with a syndrome. Therefore, no assessment was made of the impact of NIPT on the number of abortions, Down’s Syndrome community and medical professional and society’s attitudes towards people with Down’s syndrome.

As NIPT for Down’s, Patau’s and Edward’s syndromes is giving more accurate information than women already get, the UK NSC does not consider it to raise any new ethical issues. However, the Nuffield Council on Bioethics held a workshop in January 2016 to consider the ethical aspects of introducing NIPT.

The below Parliamentary question was asked by Lord Shinkwin on 2016-03-16.

To ask Her Majesty’s Government what assessment they have made of the impact of cell-free DNA, non-invasive prenatal testing techniques on (1) the medical profession’s, and (2) society’s, attitudes towards people with Down’s Syndrome.

Lord Prior of Brampton

The UK National Screening Committee (UK NSC) commissioned a full review of the published scientific and cost evidence (systematic review) relating to Non Invasive Prenatal Testing (NIPT). Based on the evidence from the systematic review and the pilot study, the UK NSC ran a three month consultation that closed on 30 October 2015 seeking views on whether NIPT be offered as an additional test to women identified with a higher risk of carrying a baby with a chromosomal condition.

The consultation was sent directly to 38 organisations and responses were received from 30 stakeholders. Details of the evidence recommendation can be found in the document titled, ‘cfDNA Systematic Review Final Report.’ Details of the organisations contacted can be found in Annex A of the document titled, ‘cfDNA Cover Sheet’ and consultation responses can be found in the document titled, ‘Screening for cfDNA Compiled Comments.’ All three documents were published on the UK NSC website and copies are attached.

The UK NSC review included the early findings from the Reliable Accurate Prenatal non-Invasive Diagnosis study. However, the possible introduction of NIPT for Down’s, Patau’s and Edwards’ syndromes to the National Health Service foetal anomaly screening programme does not fundamentally alter the choices presented to prospective parents regarding entering the foetal anomaly screening programme or not, or in options and choices available when testing identifies a foetus with a syndrome. Therefore, no assessment was made of the impact of NIPT on the number of abortions, Down’s Syndrome community and medical professional and society’s attitudes towards people with Down’s syndrome.

As NIPT for Down’s, Patau’s and Edward’s syndromes is giving more accurate information than women already get, the UK NSC does not consider it to raise any new ethical issues. However, the Nuffield Council on Bioethics held a workshop in January 2016 to consider the ethical aspects of introducing NIPT.

The below Parliamentary question was asked by Lord Shinkwin on 2016-03-16.

To ask Her Majesty’s Government what assessment they have made of the impact of non-invasive prenatal testing techniques for Down’s Syndrome on the Down’s Syndrome community in the light of the percentage of abortions that take place on the grounds of a Down’s Syndrome diagnosis.

Lord Prior of Brampton

The UK National Screening Committee (UK NSC) commissioned a full review of the published scientific and cost evidence (systematic review) relating to Non Invasive Prenatal Testing (NIPT). Based on the evidence from the systematic review and the pilot study, the UK NSC ran a three month consultation that closed on 30 October 2015 seeking views on whether NIPT be offered as an additional test to women identified with a higher risk of carrying a baby with a chromosomal condition.

The consultation was sent directly to 38 organisations and responses were received from 30 stakeholders. Details of the evidence recommendation can be found in the document titled, ‘cfDNA Systematic Review Final Report.’ Details of the organisations contacted can be found in Annex A of the document titled, ‘cfDNA Cover Sheet’ and consultation responses can be found in the document titled, ‘Screening for cfDNA Compiled Comments.’ All three documents were published on the UK NSC website and copies are attached.

The UK NSC review included the early findings from the Reliable Accurate Prenatal non-Invasive Diagnosis study. However, the possible introduction of NIPT for Down’s, Patau’s and Edwards’ syndromes to the National Health Service foetal anomaly screening programme does not fundamentally alter the choices presented to prospective parents regarding entering the foetal anomaly screening programme or not, or in options and choices available when testing identifies a foetus with a syndrome. Therefore, no assessment was made of the impact of NIPT on the number of abortions, Down’s Syndrome community and medical professional and society’s attitudes towards people with Down’s syndrome.

As NIPT for Down’s, Patau’s and Edward’s syndromes is giving more accurate information than women already get, the UK NSC does not consider it to raise any new ethical issues. However, the Nuffield Council on Bioethics held a workshop in January 2016 to consider the ethical aspects of introducing NIPT.

The below Parliamentary question was asked by Lord Shinkwin on 2016-03-16.

To ask Her Majesty’s Government what assessment they have made of the National Screening Council’s recommendation that the NHS should offer non-invasive prenatal testing techniques in the light of (1) the UK’s obligations under the UN Convention on the Rights of Persons with Disabilities, and (2) the Equalities Act 2010 protection of disabled people from unjustified discrimination on grounds of disability.

Lord Prior of Brampton

There is a long established Fetal Anomaly Screening Programme that prospective parents can choose whether to participate in. The United Kingdom National Screening Committee recommendation on non-invasive prenatal testing does not change the choices available to prospective parents within the programme. We are satisfied that the UK is compliant with its obligations under the United Nations Convention on the Rights of Persons with Disabilities and that the Programme is compliant with all obligations under the Equality Act 2010. We would also note that English law does not recognise a foetus as a separate legal person.