The Political Economy of Hope: Patients’ Organizations, Science and Biovalue

Abstract

In recent years, growing sociological interest has been directed towards patients’ organizations as key sites where practices of identity formation and socio-political activism intersect. This article focuses on one salient aspect of patients’ organizations: the increasingly important political and economic role they are playing in biomedical research. These forms of political activism and investment in science are often directed by the hope of speeding the processes by which cures or therapies are developed. For those affected by a range of human pathologies, the hope invested in science is not only an aspiration, but can also be thought of as having a political and economic materiality that seeks to bring to fruition the many future possibilities inherent in the science of the present. This realm of activity can be characterized as a political economy of hope in which becoming knowledgeable about science, in addition to activism, fundraising and heightening awareness of a particular disease are significant locales for helping to realize the objects of individual and collective hopes. Central to this political economy is how patients’ associations sponsor the value of transforming blood, tissue or DNA into resources for the generation of biovalue, as well attempt to shape the field of biomedical research in accordance with their collectively shared ideals.