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

哥伦比亚大学博士生吉娜·A·杰将在莱斯利·A·夏普博士的指导下进行研究，研究美国和法国的医疗体系如何为患有镰状细胞病的儿童提供一种高风险、昂贵但有可能治愈的程序。镰状细胞病是一种致残性遗传疾病，在少数族裔和移民人群中很常见。虽然这种方法，即造血细胞移植(也称为骨髓、脐带血和干细胞移植)，在两国都已经为镰状细胞病患者提供了20多年的时间，但在医学文献中只有几百例被记录在案。其中一半以上的手术在欧洲进行，其中大部分在法国进行。鉴于美国私营和国家资助的保险公司普遍为镰状细胞病的这种手术支付了高昂的费用，除了患者获得医疗保健的机会外，还需要考虑其他因素。由于法国和美国的医疗保健环境在国际镰状细胞疾病研究和临床护理方面处于领先地位，但却产生了不同的做法，这两个网站为比较研究提供了丰富的机会。该项目将涉及参与观察、访谈、口述历史和档案研究等社会科学研究方法。研究人员计划对美国和法国的科学家、医疗保健提供者、患者及其照顾者、倡导者和政策制定者之间的互动进行人种学检查，以更深入地了解使复杂的医疗实践在这些国家和地方背景下成为常规的社会、科学、政治、临床和伦理过程。这项研究很重要，因为它纳入了代表不足的少数族裔和移民儿童以及患有镰状细胞疾病的成年人的参与。研究人员将向患者及其家属、当地倡导团体和两国的学者传播该项目的结果。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开放。该项目将加强美国和法国之间的研究合作，为社会科学家的培训做出贡献，并帮助两国的医疗保健专业人员为患有镰状细胞疾病的个人提供最佳标准的护理。

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.