NIPT – review of activities since publication

In March 2017, the Nuffield Council on Bioethics published a report, Non-invasive prenatal testing: ethical issues. This review sets out how we have been working to strengthen the impact of the report’s findings and recommendations and highlights developments relating to or aligned with our recommendations. It also notes where the report has been mentioned or discussed in the media and in academic journals, and where its findings have been presented as part of a conference or other event. Highlights include:

• Public Health England setting up an Information and Education Group responsible for developing patient materials and workforce training in preparation for the roll-out of NIPT across England. The group involved in its work those with first-hand knowledge of people with Down’s, Edwards’ and Patau’s syndrome and their families.
• The passing of a motion at the Church of England (CoE) General Synod meeting that the CoE should include and value people with Down’s Syndrome and their families, and that unbiased information should be made available for women and couples offered screening for Down’s syndrome.
• The UK National Screening Committee appointing new ethics and social science members, and setting up a new ethics task group.
• Contributing to media debates about the ‘reflex protocol’ for offering NIPT, and the use of NIPT for determining the sex of a fetus. We contributed to a wide range of other broadcast, print and online media coverage throughout the year.

Non-invasive prenatal testing: ethical issues – Review of activities since publication (November 2018)