Felicity Boardman,
University of Warwick
This research is an interview study that aims to explore the experiences of people with Spinal Muscular Atrophy and those of their families. In particular, the research will look at how families and individuals affected by SMA think about having children and their experiences and/or ideas about genetics and genetic testing.
Individuals who have SMA themselves and are over the age of 18 are being asked to participate, as well as individuals who have a close family member affected by SMA, e.g. parents or siblings, and who are also over the age of 18.
If you decide to take part in this study, you will be asked questions about your experience of the condition that affects your family, how you feel about having children and your experiences and thoughts about genetic testing. This can be done over e mail, in person or over the telephone.
The purpose of the research is to make a contribution to our understanding and knowledge about the impact of disability and genetic testing from the perspective of individuals who directly encounter them. By taking part, you will have the opportunity to discuss your thoughts and experiences on these topics and for these to be included as a part of this broader contribution.
Further details about the research are available on this downloadable information sheet:
If you have any questions or would like to take part in the research, please e-mail | 
