Sanghamitra Das

Grant Type

Dissertation Fieldwork Grant

Institutional Affiliation

Arizona State U.

Grant number

Gr. 10105

Approve Date

April 8, 2021

Project Title

Das, Sanghamitra (Arizona State U.) "Ordering Subaltern Disorders: Gene therapy and the politics of sickle cell management in India"

This project investigates the management of sickle cell disease as a public health problem in India within the context of the emergence of novel gene therapy treatments for sickle cell disease. It inquires how experiences of living with and biomedically managing sickle cell disease, a rare genetic condition that primarily affects marginalized communities in India, is impacted through state investments in gene therapy research and product development. Documenting expert and lay perspectives as well as the life histories of the sickle cell afflicted, the project explores the possibilities and limitations of gene therapy and pharmaceutical research for sickle cell sufferers in India, and how these are framed in the policy discourse on the management of this subaltern genetic disorder. In ethnographically centering narratives of suffering among doubly (socially/genetically) marginalized communities, the project seeks to illuminate the contradictions between the promises of state investment in capital-intensive genetic therapies, unlikely to be immediately accessible to afflicted communities, and the material conditions of sickle cell sufferers deprived of basic medical care, raising in turn questions of justice. Furthermore, this project is also a contribution towards generating decolonial and digital ethnographic methods that are attentive to the precarity of marginalized patient communities arising both from regnant structural inequalities and the uncertainties of a global pandemic.