The changing meaning of gene therapy : exploring the significance of curative genetic research in the narratives of families with Duchenne muscular dystrophy

Christopher J. Condin
Gene therapy and stem cell therapy are symbols of a futuristic age in biomedicine. These experimental treatments have led to speculation that many presently untreatable diseases will soon be cured. However, there has been relatively little study of how this conjecture affects families experiencing a serious genetic illness. This study is based on interviews conducted with ten families in which a child has Duchenne muscular dystrophy (DMD) - a lethal childhood disorder. Parents were asked to
more » ... s were asked to relate their hopes and expectations for advanced genetic research, and its relevance in their everyday lives. Building on a tradition of scholarship in the social sciences that examines how individuals make sense of their experiences with illness through narrative, I show how the field of gene therapy research is implicated in the process of emplotting and telling a story about DMD and remodifying it as circumstances change. I point to some of the ways in which the significance of curative genetic research for parents varies over time. I illustrate how the field of genetics serves as a narrative device, taking on different meanings depending on its place in the story parents tell about their child's disease. I also show how parents learn about genetic research mainly by participating in socially constituted communities of practice, a process I liken to the concept of legitimate peripheral participation. This study contributes to a growing debate about whether lay-actors are sufficiently informed vis-a-vis the risks and benefits involved in experimental medical research, by showing how studies of "therapeutic misconception" can overlook the broader picture. Attention is drawn to the manner in which research is situated in parents' personal biographies and everyday lives, to the socially constituted ways in which parents come to acquire knowledge about and construct expectations for the field of genetics, and to the multiple places that it occupies in the stories they construct and tell about their child's c [...]
doi:10.14288/1.0092460 fatcat:b6jnscbqrjdutbm62fmp7spsei