Award Information

International Dissertation Research Fellowship 2021
Institutional Affiliation (at time of award):
Arizona State University
Ordering Subaltern Disorders: Gene therapy and the politics of sickle cell management in India

This project investigates the interactions between nationalism, biomedicine and marginality in developing a novel gene therapy for sickle cell disease in India. It inquires how sickle cell disease, a genetic condition that primarily affects marginalized communities in India, has come to be reinvented in the recent years as a project of nationalistic Indian biomedicine through gene therapy research and product development. Using a multi-sited/multi-modal ethnography, this project investigates the possibilities of injustice that arise from the ethical assumptions embedded in political, biomedical and capital investments in a genetic disorder that affects vulnerable communities at the margins of the nation. In ethnographically centering narratives of suffering among doubly (socially/genetically) marginalized communities, this project seeks to illuminate the contradictions between a nationalist imaginary of India as a pioneer in gene therapy and the material conditions of sickle cell sufferers deprived of basic medical care. Furthermore, this project is a contribution towards formulating a decolonial and digital ethnographic method that is attentive to the precarity of marginalized communities in India both due to structural inequality and the ongoing COVID-19 pandemic.