Gina Jae

GINA JAE, an independent scholar in New York, New York, was awarded a Hunt Postdoctoral Fellowship in October 2021 to aid research and writing on “National Commitments and Private Sentiments: The Anticipatory Politics of Sickle Cell Disease in the US and France.” The Fellowship allowed for the completion of a first monograph, “The Anticipatory Politics of Sickle Cell Disease: The Practice and Sentiment of Scientific Innovation.” Using multi-sited ethnography, this work follows the trajectory of multiple groundbreaking interventions for sickle cell disease, whose success has been mediated by expertise, vigilance, and care; these include newborn screening, imaging for stroke prevention, and disease modifying treatments using hydroxyurea and transplant medicine. The book offers anticipatory politics as an analytic that identifies affects and praxis as constituents of breakthrough scientific knowledge and clinical research. By accounting for how sentiments and practices recalibrate expectations for the future, and specifically for the future lives of children, anticipatory politics implicates how scientific understandings of a disease co-produce the possibilities for its treatment. Anticipatory politics reframes care and vigilance as resources that are subject to economic and social stratification to demonstrate how the burden of disease and the benefits of efficacious treatments are unequally shared among the primarily Black children affected by sickle cell disease This project iterates how introducing new knowledge and therapeutic innovations can proliferate existing disparities, when these interventions require the allocation of scarce resources, including where there is universal health care.