Tag: Lord Shinkwin

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.

The below Parliamentary question was asked by Lord Shinkwin on 2016-03-21.

To ask Her Majesty’s Government what assessment they have made of the impact that the UK National Screening Council’s review of cell-free DNA testing has had, and will have, on the community of people with Down’s syndrome; and in particular, the impact of cost per trisomy detected” being listed as an important factor to consider in their economic analysis.”

Lord Prior of Brampton

There is a long established NHS Fetal Anomaly Screening Programme (NHS FASP) that prospective parents can choose whether to participate in. The UK National Screening Committee (UK NSC) recommendation on non-invasive prenatal testing (NIPT) does not change the choices available to prospective parents within the programme therefore no assessment has been made.

The UK NSC announced its recommendation that NIPT should be introduced as an additional test into NHS FASP as part of an evaluation. The recommendation was not based on cost per trisomy but on the basis that NIPT is much more accurate than the current testing used in screening and can substantially reduce the number of pregnant women going on to have an invasive test, which itself carries a risk of miscarriage. The economic model reviewed by the UK NSC suggested that NIPT initially offered to women with a chance of greater than 1 in 150 of carrying a fetus with a trisomy would result in 9,912 NIPT tests being carried out, and 350 retests would be required. As a result of the NIPT testing, the number of invasive tests would fall from 7,910 to 1,434. The majority of invasive tests avoided are in trisomy free pregnancies, so that the number of test related miscarriage of healthy pregnancies would subsequently fall from 46 to three per year.

The below Parliamentary question was asked by Lord Shinkwin on 2016-03-17.

To ask Her Majesty’s Government what action they are taking to ensure that the UK complies with its obligations under the UN Convention on the Rights of Persons with Disabilities if cell-free DNA, non-invasive prenatal testing techniques are made available to pregnant women on the NHS.

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.

The below Parliamentary question was asked by Lord Shinkwin on 2016-03-17.

To ask Her Majesty’s Government what steps they are taking to fulfil their obligations under the UN Convention on the Rights of Persons with Disabilities, and in particular Article 23, subsection 3.

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.

The below Parliamentary question was asked by Lord Shinkwin on 2016-03-17.

To ask Her Majesty’s Government what assessment they have made of the possible effects of normalising cell-free DNA, non-invasive prenatal testing techniques, in particular with regard to enabling sex-selective abortions.

Lord Prior of Brampton

There is a long established Fetal Anomaly Screening Programme (NHS FASP) that prospective parents can choose whether to participate in. The UK National Screening Committee recommendation on non-invasive prenatal testing (NIPT) does not change the choices available to prospective parents within the NHS FASP. Guidance from the Royal College of Obstetricians and Gynaecologists makes it clear that women and their partners should receive appropriate information and support from a properly trained multidisciplinary team, who must adopt a supportive and non-judgemental approach.

NIPT testing as part of the NHS FASP will not be used to determine the sex of the foetus. Abortion on the grounds of gender alone is illegal.

The below Parliamentary question was asked by Lord Shinkwin on 2016-03-17.

To ask Her Majesty’s Government how much has been invested in the last year in (1) Down’s Syndrome research, (2) Down’s Syndrome screening, and (3) support for people with Down’s Syndrome.

Lord Prior of Brampton

The information requested on total investment in Down’s syndrome research is not available. Spend on research funded directly by the National Institute for Health Research (NIHR) is categorised by Health Research Classification System (HRCS) health categories including ‘congenital disorders’. There are no HRCS health sub-categories, such as for Down’s syndrome or other specific syndromes.

To obtain how much the National Health Service invested in Down’s syndrome screening in the last year would incur a disproportionate cost.

Data on how much has been invested in the last year on support for people with Down’s syndrome is not held centrally.