This collection consists of fifteen interviews with people associated with Spinal Muscular Atrophy(SMA) to explore their experiences, uses of genetic technologies and their attitudes towards population level genetic screening. A related data collection consisting of screening survey data 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.

Qualitative structured interviews with people associated with Spinal Muscular Atrophy.