Sickle cells to super cells: the alluring genetic cure for sickle cell disease
Creators: name: Baffoe-Bonnie, Marilyn S.
Publisher: name: No Publisher Supplied
Year: 2024

description: Sickle Cells to Super Cells: The Alluring Genetic Cure for Sickle Cell Disease investigates how scientists and physicians are harnessing the cellular material of people living with sickle cell disease to engineer new biotechnological advancements to serve the bioeconomy. In the postgenomic era, a curative and genetic hegemony has emerged that makes an alluring promise to cure sickle cell disease. While existing and emerging disease-modifying therapies are available, these groups prioritize biological innovations that cause permanent biological change to literally and figuratively transform sickle cells into super cells to aid in neoliberal goals of a reduction in seeking care, public spending, and disability policies. Centered around the phenomenological concept of cure, which I argue is also an ontological concept, I examine how people living with sickle cell disease understand their illness, therapeutic options, and what it means to live well as various healthcare spaces are taken up with curative and genetic therapies. I employ in-depth interviews with people living with sickle cell disease who have and have not undergone curative and genetic therapies and their families, providers, researchers, and funders of novel research and ethnographic observation at a major healthcare research institution where first-in-human gene therapy trials and other clinical trials for sickle cell disease are occurring. The first section of the dissertation discusses the driving forces central to the development of biotechnological advances for sickle cell disease. I reveal how therapeutic development has become a matter of bioeconomic concern in the postgenomic era given the hegemonic power of cure and genes that is emerging. I advance a theory of the politics of desperation: the process of using a form of desperation that extends beyond the physical or emotional suffering characteristic of an illness into persistent, structural neglect in order to advance biotechnological development and the bioeconomy. This theory emerges from evidence from participants who described the pursuit of gene therapy as a way to be freed from pain crises and as a way to limit future occurrences of racialized healthcare experiences. The second section closely follows the days of several individuals who participated in disease-modifying and curative therapies for sickle cell disease to illuminate the varying contextual forces that shape how they understand what it means to live with sickle cell disease and their perceptions of emerging therapies. The third section presents how various stakeholders understand the concept of cure. In it, I theorize the sociological mechanism that can counter the politics of desperation, that of parachutes: a continued need for social and technological advancements that can come in different forms beyond cure that would allow people with illnesses, especially racialized illnesses, to descend from an unsafe height. I argue that to achieve the very real possibility of living well with illness, the biomedical research and healthcare industry will need to recognize that care will always be needed before cure, after cure, and, most forgotten, alongside cure.