Doctoral Dissertation Research: Bone Marrow Transplant Practices for Children with Sickle Cell Disease in the United States and France

Columbia University, New York NY

Investigators

Abstract

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.