Doing the Right Thing: The Logic & Legitimacy of American Bioethics at the turn of the Millennium Item Type text; Electronic Dissertation Authors Leinhos, Mary Rebecca Publisher The University of Arizona. Rights Copyright © is held by the author. Digital access to this material is made possible by the University Libraries, University of Arizona. Further transmission, reproduction or presentation (such as public display or performance) of protected items is prohibited except with permission of the author. Download date 02/10/2021 11:11:58 Link to Item http://hdl.handle.net/10150/193799 DOING THE RIGHT THING: THE LOGIC & LEGITIMACY OF AMERICAN BIOETHICS AT THE TURN OF THE MILLENNIUM by Mary Rebecca Leinhos ________________________ A Dissertation Submitted to the Faculty of the DEPARTMENT OF HIGHER EDUCATION In Partial Fulfillment Of The Requirements For the Degree of DOCTOR OF PHILOSOPHY In the Graduate College THE UNIVERSITY OF ARIZONA 2006 2 THE UNIVERSITY OF ARIZONA GRADUATE COLLEGE As members of the Dissertation Committee, we certify that we have read the dissertation prepared by Mary Rebecca Leinhos entitled Doing the Right Thing: The Logic & Legitimacy of American Bioethics at the Turn of the Millennium and recommend that it be accepted as fulfilling the dissertation requirement for the Degree of Doctor of Philosophy in Higher Education _____________________________________________________Date: Nov. 21, 2005 Jennifer Croissant _____________________________________________________Date: Nov. 21, 2005 Sheila Slaughter _____________________________________________________Date: Nov. 21, 2005 Gary Rhoades Final approval and acceptance of this dissertation is contingent upon the candidate’s submission of the final copies of the dissertation to the Graduate College. I hereby certify that I have read this dissertation prepared under my direction and recommend that it be accepted as fulfilling the dissertation requirement. _____________________________________________________Date: Nov. 21, 2005 Dissertation Director: Jennifer Croissant 3 STATEMENT BY AUTHOR This dissertation has been submitted in partial fulfillment of requirements for an advanced degree at the University of Arizona and is deposited in the University Library to be made available to borrowers under rules of the Library. Brief quotations from this dissertation are allowable without special permission, provided that accurate acknowledgment of source is made. Requests for permission for extended quotation from or reproduction of this manuscript in whole or in part may be granted by the head of the major department or the Dean of the Graduate College when in his or her judgment the proposed use of the material is in the interests of scholarship. In all other instances, however, permission must be obtained from the author. SIGNED: Mary Rebecca Leinhos 4 ACKNOWLEDGEMENTS While my work was carried out largely in solitude, it was crucially assisted by many parties. The National Science Foundation funded my project, and my anonymous panel reviewers gave valuable comments. I am very grateful to the director, faculty, staff, and students at the Bioethics Center for participating in my study, for contributing office and logistical support during my visit, and for giving their feedback on my investigation. At the University of Arizona, I am indebted to committee member Gary Rhoades for his intellectual inspiration, guidance, and warm encouragement, and to co-chair Sheila Slaughter for her incisive feedback, support, and role modeling. To my leading co-chair Jennifer Croissant, I am incredibly grateful for introducing me to and grounding me in Science & Technology Studies, for bringing her wonderful track and field coaching skills to the ivory tower, and for patiently and unwaveringly supporting my “gradual school” journey. Special thanks to friend and mentor Tom Lindell in the Molecular & Cellular Biology department for acquainting me with bioethics and suggesting the dissertation topic, and for many productive semesters teaching MCB404 together. David Guston at Arizona State University provided friendship and fostered my professional development. To my student comrades in the Higher Education department, Cindy Archerd and Lisa Schmidt, I am incredibly grateful for seeing me through many curricular and extracurricular projects with their fellowship, friendship, encouragement, and intellectual repartee. In Atlanta, I thank my CDC colleagues and friends Salaam Semaan, Marta Gwinn, Hugh Potter, and John Miles for their encouragement, and in the CDC HIV lab, Sheila Isoke, Clyde Hart, Nick DeLaTorre, and Karen Tao for supporting me during the final throes of manuscript writing. From the DHHS Emerging Leaders Program, my friends and peers Ellen Olson, Christine Moretto, John Castilia, and especially Elizabeth Skillen and Krista Crider, gave inspiration and encouragement. Outside work, friends Jen & Chris Woodfield, Jason Raby, Mike Roke, and Rob Sasaki provided much-needed study breaks, victory celebrations, and support, as did Christo Morehead, whose sage perspective sustained me through the writing marathon. Lastly, I have been blessed by my good friend Ron Chmara, my grandparents Ralph & Betty LaFontaine, my aunt Kathleen Kier, my stepdad John Skeeles, and my parents Celia Skeeles and David Leinhos, with their unending love, support, and pride. You never stopped believing in me, throughout the series of revised graduation date projections. Thank you all, I could not have succeeded without you. 5 DEDICATION To my parents, David Leinhos and Cecile Skeeles, who taught me compassion, fairness, humility, and the importance of singing my heart’s song 6 TABLE OF CONTENTS ABSTRACT…………………………………………………………………………….9 CHAPTER 1— INTRODUCTION………………………………………………...11 Research Questions…………………………………………………....…......13 Bioethics & The Challenge Of Speaking Truth To Power…….......16 Theoretical Approach………………………………………………………...27 Boundary-work and Professions…………………………………………….28 Organizations…………………………………………………………………..31 Poststructuralist Policy Analysis…………………………………………...36 Methodology: Overall Approach & Justification……………………..39 PART I: BIOETHICS IN THE UNIVERSITY COMMUNITY……...…..44 CHAPTER 2— ESTABLISHMENT OF AN ACADEMIC BIOETHICS CENTER: ENTREPRENEURS OF ETHICS……………………………...……47 National Profile of Bioethics Academic Programs…………………..52 Case Study of a Bioethics Academic Unit………………………………59 Establishment of the Bioethics Center………………………………….63 Geography………………………………………………………………….......64 Institutional Characteristics………………………………………………...65 Students…………………………………………………………………..........66 The Director of Medical Education…………………………………………69 The Medical School Bioethics Task Force…………………………………71 Proposal for a Regent/Trustee Professorship in Bioethics ……...……..73 The Medical School Dean…………………………………………………….75 Development of the Center: Financial & Intellectual Independence…………………………………………………………………...77 The Organization & Institutionalization of the Bioethics Center at Letters University……………………………………………………....….87 Resource Dependency…………………………………………………………88 Institutional Isomorphism…………………………………………………...89 CHAPTER 3— THE ACADEMIC BIOETHICS JURISDICTION: A STRAINED DIALOGUE AMONG DISCIPLINES………………………….95 The Ambivalent Identity of Bioethicists……………………………...100 The Identity of Bioethicists: Multidisciplinary Quasi-Professionals?..108 The Relationships Between the Bioethics Center & Other Jurisdictions…………………………………………….………….119 Bioethics and Academic Medicine………………………………………….119 7 TABLE OF CONTENTS—continued Bioethics and Nursing………………………………………………………..121 Bioethics, Philosophy, and the Social Sciences…………………………..124 Bioethics and IRBs…………………………………………………………..126 Bioethics, Hospital Ethics Committees, and Research Integrity……130 Bioethics and Non-profit Foundations……………………………...……133 Bioethics and Corporations………………………………………...………134 Bioethics and Public Policy………………………………………………….136 Bioethics Outreach to the Community…………………………………...137 Conclusion………………………………………………………………….…..141 CHAPTER 4— MASTER’S DEGREE PROGRAMS IN BIOETHICS: A GROWING FRANCHISE……………………………………………………...146 Student Commentaries in the American Journal of Bioethics…..153 Student motives ……………………………………………………………...154 Key Program Characteristics………………………………………..…….159 Program Satisfaction………………………………………………………..166 Summary: AJOB Student Commentaries…………………………….....170 The Master’s Program at Letters University………………………....171 Students at the Letters University BC……………………………………175 Conclusion………………………………………………………………………183 PART II: BIOETHICS & THE STATE…………………………………..186 CHAPTER 5— LIABILITY & EXPERTISE: THE EMERGING PROFESSIONAL JURISDICTION OF BIOETHICS IN THE LEGAL ARENA ………………………………………………………...189 Claims of Professional Jurisdiction in the Legal Arena…………...191 The Liability of IRBs………………………………………………………...195 IRBs & the Legal Concept of Negligence………………………………….205 Determining the Standard of Care for IRBs: A Role for Bioethics Expertise……………………………………………………………………….208 The Liability of Ethics Consultants………………………………….....216 Ethics Consultants: An Uncertain Professional Group………………....220 Other Professions: Complex Relationships in a Complex Setting.........224 Insurers: Lukewarm about Ethics Consultation……………………......226 The State: The Value and Accountability of Expertise…………………228 Liability and the Jurisdiction of Ethics Consultation…………………...231 Conclusion……………………………………………………………………...235 8 TABLE OF CONTENTS—continued CHAPTER 6— BIOETHICS IN PUBLIC POLICY: THE NATIONAL BIOETHICS ADVISORY COMMISSION & THE STEM CELL RESEARCH DEBATE…………………………………………………………………...............243