It has been reported that non-invasive prenatal testing (NIPT) for Down’s, Edwards’ and Patau’s syndrome will be offered to pregnant women on the NHS from 2018.
Read the announcement from the Department of Health.
In January, the UK National Screening Committee (UKNSC) recommended ‘an evaluative implementation’ of NIPT for Down’s, Edwards’ and Patau’s syndrome in the NHS Fetal Anomaly Screening Programme. Pregnant women whose babies are found to have at least a 1 in 150 chance of having any of these conditions following the combined screening test will be offered NIPT. Those with a high chance NIPT result will be offered invasive diagnostic testing to get a definitive diagnosis. The UKNSC proposed that NIPT should be introduced as part of an evaluation process to understand better how offering NIPT in this way will affect the screening pathway and the choices that women make.
The Nuffield Council on Bioethics set up a Working Group in March 2016 to consider the ethical issues that would be raised by introducing NIPT into the NHS prenatal screening programme. The Council is also considering the use of NIPT for detecting rare genetic conditions such as cystic fibrosis, its availability in the private healthcare sector, and future uses of the technique which may include whole genome sequencing of fetuses.
The Working Group, which is chaired by Tom Shakespeare, Professor of Disability Research at the University of East Anglia, has been consulting a wide range of people to inform its deliberations. An anonymous online survey was open from May until August and elicited over 700 responses. A series of meetings have been held with people and organisations with an interest in the topic, including healthcare professionals, families of people with genetic conditions, women with a recent experience of NIPT, government and professional bodies, manufacturers of NIPT and scientists. Further consultation activities are planned, and the Group will publish its conclusions in February 2017.
The Council’s Director, Hugh Whittall, said: “It is important that we find a way of offering choice to pregnant women and couples whilst also respecting the equal value of disabled people – this is the challenge for prenatal screening programmes. How NIPT is offered, including the support and information provided to pregnant women and couples is going to require careful consideration, and our report in February will make recommendations to policy makers and relevant health professionals on how this might be done in the most ethical way.”