Boardman, Dr F K
University of Warwick
Selecting Futures: The Social and Ethical Implications of Genetic Screening
Spinal Muscular Atrophy (SMA)
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.
The research will be conducted in three phases: the first phase comprises 30 in-depth interviews with family members and individuals living with SMA to explore their views around SMA screening, the second phase involves a questionnaire (developed from the interview data) to be administered to a much larger sample of families living with SMA in the UK (aprox 2,000) and the third phase involves a comparative analysis of the survey data with a pre-existing survey dataset exploring the views of 996 women from the general population undergoing screening for Downs Syndrome.