Tag: Lord Shinkwin

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.

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 support individuals with Down’s Syndrome and their families.

Lord Prior of Brampton

There is support available for families with children born with Down’s syndrome. For many people this will involve an early intervention programme, to help support the child’s development and provide support to the family. This support will be delivered by health visitors and midwives.

An early intervention programme can include speech and language therapy, physiotherapy to help with any muscle weakness, and individual home teaching programmes.

Where a child has a special educational need, the local authority should also make support available to ensure the child has access to the same educational opportunities as a child without such a need. The Children and Families Act 2014 introduced a statutory framework for local authorities and clinical commissioning groups (CCGs), to work together to secure services for children and young people up to the age of 25 who have special educational needs or disability.

General practitioners can provide an annual learning disability health check. Children and young people aged 14 and over who are on a general practice’s learning disability register are eligible to have a health check and a health action plan linked to this check. The health check and health action plan can inform a local authority’s annual review of young people with special educational needs from age 14 onwards to help them to prepare for adult life.

The Care Act 2014 requires local authorities to undertake an assessment when an adult appears to have care and support needs. The assessment must involve the adult, their carer and anyone else they want to involve and consider the outcomes the person wants to achieve, their needs and how these impact on their wellbeing.

The below Parliamentary question was asked by Lord Shinkwin on 2016-06-29.

To ask Her Majesty’s Government on how many occasions (1) in the last tax year for which figures are available, and (2) for each of the tax years since the introduction of Gift Aid, HMRC reclaimed or recovered Gift Aid from an individual because they had mistakenly made a Gift Aid declaration to a charity or had not paid sufficient tax to cover the Gift Aid.

Lord O’Neill of Gatley

Around £1.3bn of Gift Aid was paid to charities in 2015/16, the highest year of Gift Aid payments since the scheme began. During 2015/16, HMRC contacted 2,580 individuals where a shortfall was identified in the tax needed to cover the donation. Individual donors are responsible for ensuring they have paid sufficient tax to cover any Gift Aid reclaimed in their donation. No statistics are available for earlier years.

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

To ask Her Majesty’s Government whether they will take steps to ensure that the issues highlighted in the Parliamentary Inquiry into Abortion on the Grounds of Disability of 2013, and in particular the finding that many parents are steered towards abortion and feel that they do not receive adequate information about other options, are not exacerbated by the introduction of cell-free DNA, non-invasive prenatal testing techniques.

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 2016-03-16.

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.