Asked by: Lord Shinkwin (Conservative - Life peer)
Question to the Department of Health and Social Care:
To ask Her Majesty’s Government whether an equality impact assessment was conducted before the decision was made to introduce non-invasive prenatal testing on the NHS.
Answered by Lord Prior of Brampton
The Department takes advice on all aspects of screening from the independent UK National Screening Committee (UK NSC) and has met with its Secretariat to discuss its recommendation on non-invasive prenatal testing (NIPT) for Down’s, Edwards’ and Patau’s syndromes as an additional test in the current NHS Fetal Anomaly Screening Programme.
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 practice, the UK NSC held a three month public consultation to enable stakeholders to feed into the review. 30 responses were received to the consultation from a wide range of stakeholders. A copy of the responses to the consultation is attached.
The Department is satisfied that the screening programme is compliant with its 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.
Asked by: Lord Shinkwin (Conservative - Life peer)
Question to the Department of Health and Social Care:
To ask Her Majesty’s Government which groups the Department of Health met before making the decision to introduce non-invasive prenatal testing on the NHS.
Answered by Lord Prior of Brampton
The Department takes advice on all aspects of screening from the independent UK National Screening Committee (UK NSC) and has met with its Secretariat to discuss its recommendation on non-invasive prenatal testing (NIPT) for Down’s, Edwards’ and Patau’s syndromes as an additional test in the current NHS Fetal Anomaly Screening Programme.
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 practice, the UK NSC held a three month public consultation to enable stakeholders to feed into the review. 30 responses were received to the consultation from a wide range of stakeholders. A copy of the responses to the consultation is attached.
The Department is satisfied that the screening programme is compliant with its 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.
Asked by: Lord Shinkwin (Conservative - Life peer)
Question to the Department of Health and Social Care:
To ask Her Majesty’s Government what was the total amount of public money given to Antenatal Results and Choices (ARC) or its precursor organisation, Support After Termination for Abnormality, in each of the last 10 years; and for what purposes the money was given.
Answered by Lord Prior of Brampton
The Department has made a number of payments to Antenatal Results and Choices over a period spanning from 2009-10 to 2012-13. The Department’s financial systems only allow full financial year reporting of expenditure from 2009-10 onwards.
The payments made by financial year are as follows:
Financial Year | Payment | Purpose |
2009-10 | £145.25 | Reimbursement for meeting attendance |
2010-11 | £15,000.00 | Grant to improve Black and Minority Ethnic (BME) antenatal support |
2011-12 | £5,000.00 | Grant to improve BME antenatal support |
2012-13 | £14,000.00 | Grant to improve care following a first trimester pre-natal diagnosis |
2012-13 | £5,450.00 | Grant to improve care following a first trimester pre-natal diagnosis |
Total | £39,585.25 |
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Asked by: Lord Shinkwin (Conservative - Life peer)
Question to the Department of Health and Social Care:
To ask Her Majesty’s Government what was the percentage increase in the number of abortions for Down's syndrome between 1991 and 2015.
Answered by Lord Prior of Brampton
There was a 64% increase in the number of abortions performed under Ground E (fetal abnormality) between 1986 (1,963) and 2015 (3,213).
The number of abortions performed under Ground E after 24 weeks gestation increased from 58 to 177 between 1991 and 2015, a 205% increase. This data should be seen in the context of the overall number of conceptions each year, of which there were 829,690 in England in 2014 (the latest year for which data are available).
The number of abortions for Down's syndrome was not recorded in 1991 as there was no diagnosis code specific to Down’s Syndrome in the International Classification of Diseases, therefore a comparison between 1991 and 2015 levels is not available. There are complex reasons why there has been an increase in abortion for fetal abnormality which reflect societal changes. The age at which women are giving birth is increasing and age is a known risk for some anomalies. Increasing levels of obesity may also be a factor. Screening techniques have also improved which means that anomalies can be more accurately detected.
Asked by: Lord Shinkwin (Conservative - Life peer)
Question to the Department of Health and Social Care:
To ask Her Majesty’s Government what was the percentage increase in the number of late term abortions (after 24 weeks) performed on the grounds of disability between 1991 and 2015.
Answered by Lord Prior of Brampton
There was a 64% increase in the number of abortions performed under Ground E (fetal abnormality) between 1986 (1,963) and 2015 (3,213).
The number of abortions performed under Ground E after 24 weeks gestation increased from 58 to 177 between 1991 and 2015, a 205% increase. This data should be seen in the context of the overall number of conceptions each year, of which there were 829,690 in England in 2014 (the latest year for which data are available).
The number of abortions for Down's syndrome was not recorded in 1991 as there was no diagnosis code specific to Down’s Syndrome in the International Classification of Diseases, therefore a comparison between 1991 and 2015 levels is not available. There are complex reasons why there has been an increase in abortion for fetal abnormality which reflect societal changes. The age at which women are giving birth is increasing and age is a known risk for some anomalies. Increasing levels of obesity may also be a factor. Screening techniques have also improved which means that anomalies can be more accurately detected.
Asked by: Lord Shinkwin (Conservative - Life peer)
Question to the Department of Health and Social Care:
To ask Her Majesty’s Government what was the percentage increase in the number of abortions performed on the grounds of disability between 1986 and 2015.
Answered by Lord Prior of Brampton
There was a 64% increase in the number of abortions performed under Ground E (fetal abnormality) between 1986 (1,963) and 2015 (3,213).
The number of abortions performed under Ground E after 24 weeks gestation increased from 58 to 177 between 1991 and 2015, a 205% increase. This data should be seen in the context of the overall number of conceptions each year, of which there were 829,690 in England in 2014 (the latest year for which data are available).
The number of abortions for Down's syndrome was not recorded in 1991 as there was no diagnosis code specific to Down’s Syndrome in the International Classification of Diseases, therefore a comparison between 1991 and 2015 levels is not available. There are complex reasons why there has been an increase in abortion for fetal abnormality which reflect societal changes. The age at which women are giving birth is increasing and age is a known risk for some anomalies. Increasing levels of obesity may also be a factor. Screening techniques have also improved which means that anomalies can be more accurately detected.
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 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.
Answered by 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.
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 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.
Answered by 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.
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 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.
Answered by 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.
Asked by: Lord Shinkwin (Conservative - Life peer)
Question to the Department of Health and Social Care:
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.
Answered by 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.