| dc.description.abstract | This dissertation explores women’s decision-making and experiences with the medical, social, and moral issues of open-uterine surgery to repair spina bifida. Part I identifies the medical and ethical discourses that typically frame this innovative procedure, highlighting the absence of women’s accounts and limited discussions of the “ethics of maternal-fetal surgeries” in the professional literature. As a remedy to this lack, Part II considers qualitative approaches to soliciting the accounts of women who considered this procedure as part of an elective, experimental protocol. Engaging questions both of methodology and of method, Part II draws on the sociological and phenomenological resources of Adele E. Clarke, Pierre Bourdieu, Richard M. Zaner, William James, and Alfred Schutz in soliciting, analyzing, and retelling women’s accounts. Part III focuses on retelling and reflecting on women’s accounts of their experiences and decision-making. Transcripts and analysis identify important themes in women’s accounts: diagnosis of disability, faith and community, definition of the decision-making situation, and living with the aftermath of a decision. In addition, women’s accounts raise questions about the goals and methods of ethics consultations and identify the importance, and challenges, of a detailed, nuanced understanding of ethics in open-uterine surgery to repair spina bifida. As research on this procedure continues, insights from women who considered the procedure in the past can help clinicians and ethicists learn about what matters in women’s experiences and decision-making for innovative maternal-fetal surgeries. This dissertation illustrates both the questions raised by open-uterine surgery to repair spina bifida and demonstrates a method of moral inquiry for addressing those questions. | |
