Doing the Right Thing: The Logic & Legitimacy of American Bioethics at the turn of the Millennium

by Leinhos, Mary Rebecca.

This dissertation research project examines how contemporary academic bioethics in the U.S. balances the aspiration to guide biomedical research and practice with the need to become an institutionally legitimate influence in society. Since its inception three decades ago, to what extent has bioethics made biomedicine more socially accountable? At the same time, to what extent has bioethics been rendered a public-relations tool for academic and corporate biomedicine? This project investigates the coproduction of the legitimacy and the logic of the academic field of bioethics by examining the activities of bioethicists in three professional arenas: the establishment of an academic bioethics unit, discourse on the legal liability of institutional review boards and health care ethics consultants, and the deliberations and recommendations of a federal bioethics commission. Bioethicists’ efforts to legitimate their field are viewed as competition and collaboration with other professional groups to stake out an emblematic expertise, which is then tendered to various societal clients. A case study of an academic bioethics unit was conducted to reveal how the unit’s efforts to secure material resources and organizational legitimacy shape the center’s intellectual output, drawing on the unit’s archival documents and interviews with the unit’s director, faculty, staff, and graduate students. Discourse analysis was used to explore what anticipated legal liability 10 reveals about the legitimacy of expertise claims and the shaping of those claims. The proceedings of the National Bioethics Advisory Commission related to the human stem cell research debate were used to examine the boundary-work conducted by the commission at the borders between science and ethics, and between ethics and public policy. The research described here shifts attention in the budding sociology of bioethics from clinical to academic bioethics, and highlights the institutional and power relationships amongst bioethics, biomedicine, and public policy. This study also contributes to the fields of higher education studies and science and technology studies, where ethics, and the relationship between legitimacy and expertise, have not been fully explored. The findings presented here provide useful insight into the challenges and opportunities bioethicists face in cultivating socially responsible biomedical science and technology. 11