This dissertation explores womens 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 womens 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 womens accounts. Part III focuses on retelling and reflecting on womens accounts of their experiences and decision-making. Transcripts and analysis identify important themes in womens accounts: diagnosis of disability, faith and community, definition of the decision-making situation, and living with the aftermath of a decision. In addition, womens 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 womens 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.
| Identifer | oai:union.ndltd.org:VANDERBILT/oai:VANDERBILTETD:etd-08052010-234425 |
| Date | 12 August 2010 |
| Creators | Bartlett, Virginia Latham |
| Contributors | Victor Anderson, C. Melissa Snarr, Larry R. Churchill, Mark J. Bliton |
| Publisher | VANDERBILT |
| Source Sets | Vanderbilt University Theses |
| Language | English |
| Detected Language | English |
| Type | text |
| Format | application/pdf |
| Source | http://etd.library.vanderbilt.edu/available/etd-08052010-234425/ |
| Rights | unrestricted, I hereby certify that, if appropriate, I have obtained and attached hereto a written permission statement from the owner(s) of each third party copyrighted matter to be included in my thesis, dissertation, or project report, allowing distribution as specified below. I certify that the version I submitted is the same as that approved by my advisory committee. I hereby grant to Vanderbilt University or its agents the non-exclusive license to archive and make accessible, under the conditions specified below, my thesis, dissertation, or project report in whole or in part in all forms of media, now or hereafter known. I retain all other ownership rights to the copyright of the thesis, dissertation or project report. I also retain the right to use in future works (such as articles or books) all or part of this thesis, dissertation, or project report. |
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