Principal Investigators


Boardman, Dr F K

Institution


University of Warwick

Contact information of lead PI


Country


United Kingdom

Title of project or programme


Selecting Futures: The Social and Ethical Implications of Genetic Screening

Source of funding information


ESRC/MRC

Total sum awarded (Euro)


€ 225,163

Start date of award


01/05/2013

Total duration of award in years


3.8

The project/programme is most relevant to:


Spinal Muscular Atrophy (SMA)

Keywords


Research Abstract


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 Down’s Syndrome.

Lay Summary


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