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.
