2020 Theses Doctoral

The Anticipatory Politics of Sickle Cell Disease: An Examination of Policy, Practice, Care, and Innovation in the U.S. and France

Jae, Gina

Sickle cell disease (Fr: la drépanocytose) is an inherited blood disorder with over a century of biomedical history in the United States. In turn, with recent decades of migration, it has become the most common genetic disease in France. For those with sickle cell disease who also live in high-income countries, the past fifty years have transformed a fatal disease of childhood into a chronic, but still life-shortening condition. In countries like the U.S. and France, where sickle cell disease also disproportionately affects disadvantaged minorities and immigrants, scientific and clinical knowledge production around sickle cell disease has become entwined with race- and class-based history and politics. This research offers ethnographic understandings of how families and health care providers are negotiating the available options to treat sickle cell disease, including the high-risk undertaking of hematopoietic cell transplantation, in a moment when most children in high-income settings are expected to reach adulthood.

This study builds upon work to understand and redress the durability of health inequalities, as new medical knowledge and innovations in care and prevention become introduced to stratified social systems. To this end, fundamental cause theory (Link and Phelan 1995) has demanded attention to the interplay of social conditions and human agency (Link and Phelan 2002, Lutfey and Freese 2005), in addition to macroeconomic and social policy, to explain the stubborn persistence of gradients in health outcomes. As my research also encountered, this includes contexts where there is universal health care. In fact, national health policies in the U.S. and France have mandated a comparable access to comprehensive care for children with sickle cell disease, where disease-specific standards are upheld by both governments for the pediatric population. With access to care removed as the ostensible barrier, this project is positioned to discern differences in transplant utilization as attributes of clinical power dynamics and practice differentiation, which I elaborate as treatment collectives, that were particular to the health care institutions I observed in both countries.

To this end, I articulate anticipatory politics as a novel theoretical framework and analytic lens to distinguish anticipation as a form of care. As an analytical paradigm, anticipatory politics identifies affects and practices as key components in the production of scientific knowledge and clinical work. This approach links anticipation and hopes for the future materially and temporally to the historical contingencies of emergent scientific innovation. As politics, I demonstrate how expectations for the future lives of children become co-produced with structural paradigms that shape who is offered the option to intensify treatment, including the option to undertake high-risk interventions. By reframing anticipation and care as politics at the interface of medical innovation and clinical practice, this project complicates an assumption that universal health care is sufficient to redress disparities in treatment access and health outcomes. This research contributes to science studies and organizational theory by providing a framework to account for the national commitments and personal sentiments that negotiate translational bottlenecks when accessing newer technologies in the clinical setting.