This data file contains the responses of 337 participants who completed the SMA Screening Survey (UK). All participants live with Spinal Muscular Atrophy in some capacity (either having it themselves or having it in their family). Participants were asked about their views towards population genetic screening: pre-conception genetic screening, prenatal genetic screening and newborn genetic screening. They were also asked about their previous use of reproductive genetic technologies and their views on the wider issue of pregnancy termination. Data collection occurred between September 2014 and June 2015. A related data collection consisting of interview transcripts is also made available (see Related Resources). This study explores the social and ethical implications of the potential introduction of genetic screening for conditions with variable presentations and focusing on the condition Spinal Muscular Atrophy (SMA). The study aims to explore what families living with SMA think about genetic screening and testing in order to understand the role and value of direct ‘experiential knowledge’ in reproductive decision-making. The study also aims to explore whether families living with genetic disease approach screening decisions in a different way to pregnant women from the general population without such ‘experiential knowledge’ of the condition being screened for.

This is survey data (a scanned copy of the survey in the can be found under 'Documentation'). The survey was developed out of qualitative data (36 in-depth interviews). It was distributed to people living with Spinal Muscular Atrophy. Inclusion criteria: living in UK, over 18, diagnosed with SMA/someone in family diagnosed with SMA, English-speaking. The survey was mailed out to 1,000 households affected by SMA (through SMA Support UK), and distributed via email through the SMA patient registry and SMA family networks on social media (facebook, twitter).