Columbia University doctoral candidate Gina A. Jae, supervised by Dr. Lesley A. Sharp, will conduct research on how healthcare systems in the United States and France are making a risky, expensive, but potentially curative procedure available to children affected by sickle cell disease, a disabling genetic disorder common to minority and immigrant populations. Although this procedure, hematopoietic cell transplantation (also known as bone marrow, umbilical cord blood, and stem cell transplantation), has been available to patients with sickle cell disease in both countries for over two decades, only a few hundred cases have been documented in the medical literature. Over half of these procedures have taken place in Europe, with the majority of them performed in France. Given that U.S. private and state-funded insurers universally cover the high cost of this procedure for sickle cell disease, other factors need to be considered in addition to the availability of healthcare access to patients. Because French and U.S. healthcare environments share leadership in international sickle cell disease research and clinical care, but are nonetheless producing divergent practices, these two sites provide a rich opportunity for comparative investigation.
The project will involve social science research methods such as participant observation, interviews, oral history, and archival research. The researchers plan to conduct an ethnographic examination of interactions among scientists, healthcare providers, patients and their caregivers, and advocates and policymakers in the U.S. and France in order to produce a deeper understanding of the social, scientific, political, clinical, and ethical processes that are making complex medical practices routine in these national and local contexts.
The research is important because it incorporates the participation of underrepresented minority and immigrant children and adults affected with sickle cell disease. The researchers will disseminate the findings of the project to patients and their families, to local advocacy groups, and to scholars in both countries. Oral histories will be archived and made available to the public through the Columbia University Center for Oral History. The project will strengthen research collaborations between the U.S. and France, contribute to the training of a social scientist, and help healthcare professionals in both countries provide the best standard of care to individuals with sickle cell disease.
Sickle cell disease is a common inherited hemoglobin disorder in the United States, and with recent decades of migration, it is now the most common genetic disease in France. As sickle cell disease disproportionately affects minorities and immigrants in these countries, race, ethnicity and class-based politics have uniquely intertwined with its scientific and clinical knowledge production, as well as access to socioeconomic and healthcare resources among its affected populations. With these historical and contemporary contexts in mind, this project examines the tension between the medico-scientific innovation of hematopoietic (stem) cell transplantation and the possibilities for its routinization to clinical practice in sickle cell disease. Although the US and France healthcare systems share leadership in sickle cell disease clinical care and research, healthcare institutions across both countries still markedly differ in their utilization of stem cell transplantation, to date the only proven cure for sickle cell disease. Fundamental cause theory posits that technological innovations risk widening inequities in health, as those with greater social capital become the early adopters and beneficiaries of life-prolonging therapies. As ongoing advances in chronic care management are transforming this once overwhelmingly fatal childhood disease into a chronic condition, children with sickle cell disease and their families are negotiating the immediacy of the significant procedure-related risks of stem cell transplantation against the hope for a potential cure and projected gains in quality of life and adult lifespan. Using comparative ethnographic methods, this research offers fieldwork-based understandings of how advanced medical technologies add complexity to the material and discursive practice of medicine, including the implicit vulnerabilities of these processes among healthcare systems that service the children of minorities and immigrants.
