Gene therapy sometimes cures, sometimes causes harm, and more often produces new states of partial wellness. This paper asks what that means for the notion of 'cure', bodily wholeness and the temporality of disease.
Paper long abstract:
When gene therapy began to be used in human subjects in the early 1990s, an early experiment appeared to be a great success. Two children, previously afflicted by a rare and serious immune disorder, underwent a dramatically visible transformation. Amongst their various medical improvements, they grew lymph nodes and tonsils where previously there had been none. This paper considers the bodily transformations brought about by gene therapy, an experimental molecular technique that replaces faulty genetic segments to curative ends. I walk through some of the ways in which gene therapies refigure bodies, saving lives while in some cases creating other diseases in the process, or amending but not quite resolving severe disease. I use ethnographic observations from the hospital to reflect on the notion of the 'cure', and what it implies about bodily wholeness, the temporality of disease, and the impulse towards permanence. In closing I touch upon the relationship between bodies, states and experimental medicine, asking what bodily manipulations and metamorphoses are permissible, and within what limits.