The Council is partnering with national learning disability charity Mencap to explore prenatal genetic screening with people with Down’s syndrome. The views gathered will inform the Council’s forthcoming report on non-invasive prenatal testing (NIPT).
Some of the genetic variations that NIPT can test for are associated with a learning disability, such as Down’s syndrome. Though people with these variations have an important interest in the debate on NIPT, their views often go unheard. The Council and Mencap have commissioned Dr Barbara Barter (Clinical Psychologist) to carry out a series of one-to-one interviews with people with Down’s syndrome over the coming weeks. People taking part have been recruited with the support of advocacy and campaigning organisations across England.
The consultation work was subject to an independent ethical review process. Dr Barter has previous experience of and published work on consulting people with Down’s syndrome on issues raised by prenatal screening. Professor Richard Hastings of the University of Warwick is also involved in the work in an advisory capacity.
The Nuffield Council has consulted with a wide range of individuals and organisations with experience of and views about NIPT as part of its evidence gathering process, including healthcare professionals, people with genetic variations and their families, pregnant women, manufacturers of NIPT tests, researchers, and government and professional bodies. The Group will publish its findings and conclusions in early March 2017. A report by Dr Barter analysing themes from the interviews with people with Down’s syndrome will be published at the same time.