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

哥伦比亚大学博士候选人吉娜A。Jae，由Lesley A.夏普将研究美国和法国的医疗保健系统如何为受镰状细胞病影响的儿童提供风险，昂贵，但可能具有治愈性的手术，镰状细胞病是少数民族和移民人口常见的致残性遗传疾病。 虽然这种程序，造血细胞移植（也称为骨髓，脐带血和干细胞移植），已提供给镰状细胞病患者在这两个国家超过二十年，只有几百例已记录在医学文献中。 这些手术中有一半以上在欧洲进行，其中大多数在法国进行。 鉴于美国私人和国家资助的保险公司普遍支付镰状细胞病手术的高昂费用，除了患者获得医疗保健的可能性外，还需要考虑其他因素。由于法国和美国的医疗环境在国际镰状细胞病研究和临床护理方面处于领先地位，但仍然产生不同的实践，这两个网站提供了丰富的比较研究机会。该项目将涉及社会科学研究方法，如参与观察，访谈，口述历史和档案研究。 研究人员计划对美国和法国的科学家，医疗服务提供者，患者及其护理人员，倡导者和政策制定者之间的互动进行人种学检查，以便更深入地了解社会，科学，政治，临床和伦理过程，这些过程使复杂的医疗实践在这些国家和地方环境中成为常规。 这项研究很重要，因为它包括了代表性不足的少数民族和移民儿童以及患有镰状细胞病的成年人的参与。 研究人员将向患者及其家属、当地倡导团体和两国学者传播该项目的研究结果。 口述历史将被存档，并通过哥伦比亚大学口述历史中心向公众提供。 该项目将加强美国和法国之间的研究合作，为培养社会科学家做出贡献，并帮助两国的医疗保健专业人员为镰状细胞病患者提供最佳护理标准。

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.