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

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