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Beyond Consent: a Relational Model of Community Authorization for Genetically Modified Mosquito Trials in Developing Countries

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Beyond Consent: A Relational Model of Community Authorization for Genetically Modified Mosquito Trials in Developing Countries by Lara Zahabi, BSc, MD, MHSc A thesis submitted in conformity with the requirements for the degree of Doctor of Philosophy Institute of Medical Science/Collaborative Program in Bioethics University of Toronto © Copyright by Lara Zahabi 2014 Beyond Consent: A Relation Model of Community Authorization for Genetically Modified Mosquito Trials in Developing Countries Lara Zahabi Doctor of Philosophy Institute of Medical Science/Joint Program in Bioethics University of Toronto 2014 Abstract This thesis provides the first empirical explanatory theory for community authorization for Genetically Modified Mosquito (GMM) trials. Although this theory was developed in the context of GMM trials, it can apply to other endeavors, research or not, where whole communities might be affected. As GMM make their way from laboratories to villages of developing countries to test their effectiveness in controlling vector-borne diseases, community authorization emerges as a critical and urgent, yet undefined, mechanism of protection and respect for communities who might be affected by research and its outcomes. Following a constructivist Grounded Theory approach, I analyzed three prominent GMM trials from Mexico, the Cayman Islands, and Malaysia. Nineteen (19) interviews and two hundred and forty nine (249) documents were analyzed in order to uncover the substantive and procedural aspects of authentic and sufficient community authorization for research, as well as the factors that affect such authorization. This interdisciplinary bioethics thesis supports a relational notion of community authorization, as a continuous state of ongoing, maintenance-dependent, approval for research from inception through all stages. Enabled by successful relationships between researchers and community groups and individuals, this state manifests in formal and informal ways at all levels of the community; institutional, national, regional, local, and even individual, and involves authorities, ii both official and traditional, and publics alike. The state of authorization manifests in reciprocity, or the fulfillment of commitment to promote mutual interests. The findings challenge current conceptions of research participants as well as consent, and consequently current practices of research appraisal. Future research is needed to provide researchers, research ethics boards, and regulatory agencies with standardized tools to gauge the conduct of research in relationship to the community. The elements of this theory, as well as its reliability, applicability and generalizability, need to be tested and refined in future empirical work in multiple contexts and different fields. iii Acknowledgments I would like to express my deepest appreciation to all of those who have helped and supported me during my graduate study program. Their support, understanding, and encouragement have provided me the possibility to complete this work. Foremost is my husband and best friend Samer Bekdash, who unreservedly supported me through all the endless demands of my studies. His love was a constant source of comfort and his selfless care has given me wings to follow my dreams and ambitions, even at the expense of his own sometimes. I am ever blessed to have him as a partner, best friend, and mentor. I am indebted to my supervisor Jim Lavery and my dissertation advisory committee members, Peter Singer and Ross Upshur, who have guided me throughout the program with their bright minds and valuable experiences and knowledge. Each one of them has been an inspiration to me in a different way, and their complementary contributions have brought me to this successful stage, and remain with me as long-life gifts. I am grateful to Jim for supporting me since I was a student in the Master’s program and throughout the process, and for his valuable guidance and constant encouragement. From him I will always learn intellectual humility. From Peter, I will always learn strategic thinking, and that with faith, will, and determination, one can truly make a difference in the world. From Ross, who was my first inspiration to join a PhD program in bioethics, I will always learn logic and critical thinking. I would also like to express my sincere gratitude to Halla Thorsteinsdóttir for her valuable comments and support in both my thesis finalization as well as my doctoral qualifying exam. In both times, she generously accommodated my tight timelines, and provided the most appreciated feedback. I am also thankful to Barbara Secker, Bernard Dickens, and Peter Newman for reviewing my research proposal and providing critical insights that shaped every aspect of my research. I would also like to thank Peter Newman and Derek Jones for serving as reviewers on my final thesis examination. I am grateful to Vasundara Venkateswaran for all her guidance and encouragement to successfully complete my program requirements, as well as to Mingyao Liu and Howard Mount iv from the Institute of Medical Science. I am indebted to Janine Ramsey and her warm hospitality in Tapachula, for generously sharing her considerable expertise and donating her precious time to support my research. Her insightful comments and experiences form in fact the basis of my research. My appreciation also goes to Ana Laura Pacheco, Abraham Marcoschamer, and Claudia Ytuarte, for all their insights that provided depth to this thesis and for their hospitality and generosity in donating their time to support my field visits. I am also thankful to Luca Facchinelli, Laura Valerio, Sergio Meneses, and Guillermo Bond for all the support they offered me in Tapachula. I am also sincerely grateful to Don Martimiano Matute, Don Leobardo Àlvarez, and the men and women of Río Florido, who kindly received me in their community and opened their homes for my research, as well as donated their precious time to answer my questions and share their experiences. I would also like to express my gratitude to Sunita Bandewar and Renaud Boulanger for their scholarly inputs throughout my research study. I am also thankful to Stephanie James, Anthony James, Scott O’Neil, Bart Knols, and Darlene McNaughton for all the insightful discussions we had, and that have affected my research one way or another. I am deeply thankful to those who supported this research project by offering logistic or financial support, in particular the Grand Challenges in Global Health Initiative, the Institute of Medical Science at the University of Toronto, Abdallah Daar, Andrew Taylor, and Deepa Persad. I wish to thank the many other faculty members at the University of Toronto under whom I have been privileged to study and who have contributed tremendously to my learning. Last but not least, I am ever grateful to my family and friends who have been extremely understanding and supportive, offering encouragement and accommodating my demanding schedule and occasional lack of attention to their needs. In particular, I am ever indebted to my mother, Samiramiss and my brother Sobhi, without whom I wouldn’t have reached this point in my life. I am also deeply thankful to Rasha Elendari, for accompanying me in my thesis writing journey, holding my hand and pushing me forward right when I needed it. I would also like to thank Ibrahim El-Ekawi for giving me a small tip that made a big difference in translating the documents from Malaysian and Chinese. v Table of Contents Acknowledgments ........................................................................................................................ iv Table of Contents ......................................................................................................................... vi List of Tables .............................................................................................................................. xiv List of Figures .............................................................................................................................. xv List of Appendices ...................................................................................................................... xvi CHAPTER 1 Introduction ........................................................................................................... 1 1 Purpose .................................................................................................................................... 1 2 Overview .................................................................................................................................. 1 3 Thesis Organization ................................................................................................................ 8 Part I Literature Review ............................................................................................................ 11 CHAPTER 2 Dengue and Genetically Modified Mosquitoes ................................................. 12 1 The Global Burden of Dengue ............................................................................................. 12 2 Dengue: Treatment and Prevention .................................................................................... 14 3 The New Era of Disease-Vector Control ............................................................................ 16 4 Summary ............................................................................................................................... 18 CHAPTER 3 Ethical, Social,
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