Negotiating Uncertainty: Risk, Responsibility, and the Unsettled Facts of HPV Vaccination in the United States By Katharine Alice Sheets Rendle A dissertation submitted in partial fulfillment of the requirements for the degree of Doctor of Philosophy (Social Work and Anthropology) in the University of Michigan 2014 Doctoral Committee: Associate Professor Elizabeth F. S. Roberts, Co-Chair Professor & Associate Dean Michael S. Spencer, Co-Chair Lecturer Holly Peters-Golden Professor Elisha P. Renne Professor Emertia Kristine A. Siefert © Katharine Alice Sheets Rendle 2014 To my family ii ACKNOWLEDGMENTS I would like to thank all the parents who so generously offered their time, insight, and expertise with me. I truly enjoyed hearing your stories, and while I tried to remain true to the information you shared, any misrepresentations or potential errors in this text are solely the product of my own misunderstanding. I would also like to acknowledge and thank those organizations who funded this research and my doctoral training, including: The Wenner-Gren Foundation, Dissertation Fieldwork Grant; University of Michigan, Rackham Graduate Student Research Grant; University of Michigan, Rackham One-Term Dissertation Grant; University of Michigan School of Social Work, Summer Funding; University of Michigan School of Social Work, W. K. Kellogg Family Endowed Fellowship; and University of Michigan, Rackham Regents Fellowship. I am grateful for your support. I am thankful and indebted to the members of my committee, who have not only supported me by offering intellectual and emotional guidance across the years, but also encouraged me to think critically at each step of the way. I am grateful for my fellow students with whom I have shared laughter, tears, panic, and joy, and especially to the unsung heroes—Todd Huynh, Laura Thomas, and Laurie Marx—for always being there to assist, support, and encourage. iii Lastly, I am eternally grateful and lucky to be surrounded by such amazing friends and family, who have made this journey possible. To my parents, for always being my biggest fan and giving me more opportunities and love that I could never have imagined. To my friends for reminding me to enjoy the ride. To my daughter for her spirit and laughter. And lastly to Edward, for your patience, support, love, and inspiration. We win. iv TABLE OF CONTENTS DEDICATION ii ACKNOWLEDGMENTS iii LIST OF TABLES vii LIST OF FIGURES viii LIST OF APPENDICES x ABSTRACT xi CHAPTER ONE: INTRODUCTION 1 I. BACKGROUND: DESIGN, MARKETING, AND CONTROVERSIES OF THE HPV 2 VACCINE II. THEORETICAL FRAMEWORK AND LITERATURE REVIEW 5 III. RESEARCH DESIGN 28 IV. DATA COLLECTION AND ANALYSIS 33 V. OUTLINE OF CHAPTERS 37 VI. RESEARCH IMPLICATIONS 40 VII. FUTURE DIRECTIONS AND OPPORTUNITIES IN U.S. HEALTHCARE 42 CHAPTER TWO: MAKING AND UNMAKING PATTERNS 46 I. PARENTAL DECISION-MAKING AND HPV VACCINATION IN THE UNITED 47 STATES II. REVIEW OF DISSERTATION FINDINGS 50 III. IMPACT OF PUBLIC CONTROVERSIES AND CULTURAL ANXIETIES 54 IV. THE STORY OF JENNY TETLOCK 64 V. VACCINE SAFETY 66 v VI. DOCTORS KNOW BEST…SOMETIMES 69 VII. UNMAKING MODELS 71 VIII. LOCATING PEOPLE AMID THEORY 74 CHAPTER THREE: EMPOWERMENT, AMBIVALENCE, AND PHARMACEUTICAL 81 MARKETING I. PHARMACEUTICAL INTERESTS AND VACCINE DEVELOPMENT 82 II. PROMISE OF EMPOWERMENT: INITIAL MARKETING OF THE HPV VACCINE 84 III. PUBLIC DEBATES, CONTROVERSIES AND RESISTANCE TO HPV VACCINATION 94 IV. CONTINUED CONTROVERSIES: PERRY, BACHMANN, AND DR. MERCOLA 102 V. IMPACT OF MEDIA ON HPV VACCINATION DECISIONS 108 VI. HOPE AND HARM: REFLECTIONS ON THE PHARMACEUTICAL INDUSTRY 112 VII. GROWING OPPORTUNITIES FOR SOCIAL WORKERS IN HEALTHCARE 117 CHAPTER FOUR: TEMPORALITY, SEX, AND DESIRES TO DELAY 121 I. FUNDAMENTAL CAUSE THEORY AND COUNTERVAILING MECHANISMS 122 II. POPULATION PATTERNS AND HPV VACCINATION IN THE UNITED STATES 124 III. ASSESSMENTS OF TIME, SEX, RISK, AND SCIENCE 129 IV. DEBATING THE ‘RIGHT TIME’ TO VACCINATE 133 V. FUTURE DIRECTIONS & CONCLUSIONS 136 CHAPTER FIVE: MORAL RESPONSIBILITIES, INDIVIDUAL RIGHTS, AND 139 COLLECTIVE GOOD I. PARENTAL RIGHTS AND MANDATORY VACCINATION 140 II. MORAL ASSESSMENTS 147 III. RESPONSIBILITY TO PROTECT 149 IV. VULNERABILITY, RISK, AND NEW MORALITIES 152 CHAPTER SIX: FUTURE DIRECTIONS 156 APPENDICES 161 REFERENCES CITED 188 vi LIST OF TABLES 1. Interview Participant Characteristics 50 2. Five-Items Examining Trust in Healthcare Professionals 69 vii LIST OF FIGURES 1. Children aged 11 or older of enrolled participants, by age, gender and 53 vaccination status 2. Parental responses to “The HPV vaccine may cause children to have sex at 55 an earlier age” by vaccination status 3. Parental responses to “The HPV vaccine is being pushed to make money for 59 drug companies” by vaccination status 4. Parental responses to “The HPV vaccine may cause mental retardation” by 62 vaccination status 67 5. Parental responses to “The HPV vaccine is safe” by vaccination status 6. Parental responses to “There is not enough scientific evidence that the HPV 68 vaccine is safe” by vaccination status 84 7. Gardasil poster targeting young women 86 8. Print images from Merck’s One Less Campaign 87 9. Gardasil commercial targeting adolescents: Screenshot A 88 10. Gardasil commercial targeting adolescents: Screenshot B 89 11. Gardasil commercial targeting adolescents: Screenshot C 90 12. Gardasil commercial targeting young adult women: Screenshot A 91 13. Gardasil commercial targeting young adult women: Screenshot B 95 14. Anti-vaccination poster from 1890s 97 15. CounterThink Editorial Cartoon 98 16. Wasserman Editorial Cartoon 101 17. Gardasil poster targeting young adolescent boys and girls 102 18. Image of Gardasil website 105 19. Branch Editorial Cartoon 20. Parental responses to “In general, have you heard positive, negative, or 109 neutral stories about the HPV vaccine in the media?” by vaccination status 126 21. Estimated HPV vaccine coverage among U.S. adolescents, aged 13-17 viii 22. Estimated HPV vaccine coverage among U.S. adolescents, aged 13-17—by 127 poverty level 23. Estimated HPV vaccine coverage among U.S. adolescents, aged 13-17—by 128 race 24. Parental responses to “Which of the following statements do you agree with 142 more a) government should let parents decide for themselves how best to protect their children even if it means they don’t always do the right thing; b) government should pass laws to ensure all children are protected even if it sometimes interferes with parents’ rights to make their own decisions?” by vaccination status ix
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