Sanghamitra Das

SANGHAMITRA DAS, then a graduate student at Arizona State University, Tempe, Arizona, was awarded funding in April 2021 to aid research on ‘Ordering Subaltern Disorders: Gene therapy and the politics of sickle cell management in India,’ supervised by Dr. Lindsay Adams Smith. This project investigates the convergence of the nation-state, biomedicine and (bio)capital around the construction of sickle cell disease as a subaltern disorder in the caste-based society of India. It inquires how experiences of living with and treating sickle cell disease, a rare genetic condition that is biomedically mapped onto marginalized communities in India, can be impacted through state investments in emerging pharmaceuticals and biotechnological innovations like gene therapy at the expense of strengthening existing health systems. Documenting expert and lay perspectives as well as the life histories of the sickle cell affected, this project explores the possibilities and limitations of pharmaceutical research and drug development for sickle cell management in India. These are epistemic and market processes that in the case of sickle cell disease draw upon notions of caste-based biological difference. In ethnographically centering narratives of suffering among doubly (socially/genetically) marginalized communities, this project seeks to illuminate the contradictions between the promises of novel therapies’unlikely to be immediately accessible to these communities’and the material conditions of sickle cell sufferers deprived of basic medical care. Furthermore, this project is also a contribution towards generating decolonial and digital ethnographic methods that are attentive to the precarity of marginalized communities arising both from regnant structural inequalities and the uncertainties of a global pandemic.