Waiting for the cure: Mapping the social relations of human gene therapy research

Abstract

This paper maps out the relationships between key participants in cystic fibrosis (CF) gene therapy research. These include relationships among researchers, physicians, the Cystic Fibrosis Foundation (CFF), people with CF, and their families. Due to the structure of these relationships, aspects of the research process are at odds with the interests of people with CF. The CFF as an organisation focuses narrowly on a particular research agenda to the exclusion of other potentially competing concerns. People with CF are in a weak position to organise and assert their interests. Clinicians are more sceptical of the research enterprise but fail to play an effective mediating role for patients because of their own weak position relative to CF research interests.