In August 2016 the Nuffield Council on Bioethics commissioned Mencap to lead on gaining the views of individuals with genetic variations and a learning disability. Mencap asked Dr Barbara Barter to act as lead facilitator for this piece of work, in light of her previous research in this field (Barter, Hastings, Williams and Huws 2016). Although the timescale for meaningful participation was very short it was considered crucial to include the perspectives of individuals with the genetic variations in question.
Nine people with Down syndrome agreed to take part in the consultation. Initially they attended information sessions to discuss the topic, and understand or clarify information. Seven individuals then took part in individual interviews in November and December 2016. The interviews were guided by particular questions and tailored to individual comfort with the topic. Interviews from six participants were transcribed verbatim and a process of thematic analysis was employed to analyse the data.