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By Jennifer S. Singh Copyright (2010) by Jennifer S. Singh ii ACKNOWLEDGEMENTS The process of conducting sociological research on the genetics of autism spectrum disorders has been a journey with many people that I owe sincere gratitude. My entry in to the dynamics of autism started at the Center for Integration of Research on Genetics and Ethics (CIRGE) at the Stanford Center for Biomedical Ethics. Mildred Cho, Judy Illes, and Joachim Hallmayer, were very supportive of my ideas and provided a working example of how interdisciplinary work can be an excited and fruitful process. CIRGE also funded the initial data I gathered for this dissertation, which consisted of interviews with adults on the autism spectrum. It was through these perspectives that I was first introduced to the various interpretations and meanings of autism spectrum disorders. I am also thankful to Cheryl Theis, Paula Jacobson, and Holly Tabor for educating me on the complexities of autism spectrum disorders. I want to thank my dissertation committee who has been very supportive of my work and responsive to the many questions that have arisen along the way. First and foremost, Adele Clarke has been a true mentor throughout this process. She has allowed me to follow my own ideas and has helped me tremendously with writing and theoretical guidance. I could not have completed this project without her. Janet Shim has also been a wonderful asset to my committee. She has been instrumental in helping me to draw some boundaries around my project and has provided me with many practical words of wisdom every time we meet. I am also grateful to have Chloe Silverman on my committee; her work on autism has been truly inspirational. I am also sincerely grateful for all the financial support I have received throughout my scholarship at UCSF. This support really allowed me to focus on my iii education and research, and also served as a motivating factor knowing that people believed in me. The National Institute of General Medical Sciences Fellowship funded a large part of my academic scholarship at UCSF. This fellowship also paid for travel expenses to professional meetings that have been instrumental for my research. I also received funding from the Department of Social and Behavioral Sciences at UCSF and the Andrews Scholarship in the School of Nursing during my first year and sixth year, respectively. I am also very honored and grateful to have received the Diana Forsythe Memorial Dissertation Award from the Department of Anthropology, History and Social Medicine, UCSF and the Anselm Strauss Dissertation Research Award from the Department of Social and Behavioral Sciences. This support was extremely useful in conducting my dissertation research. The faculty at UCSF in the Department of Social and Behavioral Sciences has also been very supportive throughout my scholarship. With a background in molecular genetics and public health, I was taking a leap into a new area of expertise when I started this program. The patience and commitment by the faculty expanded my “sociological imagination” and gave me the confidence I needed to be here today. I am especially thankful to Howard Pinderhuges, who chaired my third area committee and taught many of my courses. I am also very grateful to the staff in the Department of Social and Behavioral Sciences, especially to Linda Tracy, Cynthia Mercado-Scott, and Brandy Woleslagle. Thank you for all the faxes, scans, and last minute administrative assistance needed to complete this project. I would also like to thank my fellow classmates, especially my cohort – Jia-Shin Chen, Mary Gee, Walter Gomez, Brook Hollister, Coline McConnell, Alicia Neuman, iv and Nicole Wolfe. This was such a fun and diverse group of people to have shared my first two years with. I must also thank my friends in San Francisco, especially Joel and Teresa Baumgardner. I have lost count of how many times I have stayed with you in all my travels to and from San Francisco. You were my home away from home during those busy and often stressful times. Most importantly, I must acknowledge all the participants that took time out of their busy days to be part of this study, including adults diagnosed or self – identified with autism spectrum disorders, parents of children with autism who participated in a genetics research study, and scientist who study autism genetics. Without the honesty and candidness of these participants, this project would never have been possible. Finally, I am deeply grateful to my family for sticking with me through all my academic adventures. My family is the foundation of everything good in my life. The love, laughter, and constant encouragement have been my ongoing inspiration throughout this journey. My sisters and brothers - Jovita, Andrew, Eleanor, Matthew and Anita - thank you for always believing in your little sister. Mom and Dad, I would not be the person I am today without you. Thank you for always supporting me in every decision I make and setting such a high standard of work ethic, compassion, and love. And a special thank you to my husband Michael and our son Joaquin. You have sacrificed the most to make this journey possible. I could not have done this without your daily support and continuous moments of love and silliness to bring me back to reality. v ABSTRACT This dissertation is a sociological study of social and scientific representations of autism genetics. Over the last decade, there has been an increase in the awareness and prevalence of autism spectrum disorders (ASD) and efforts to identify the causes and etiology of this disorder have been unprecedented, particularly in genetics research. To address the production, representations and implications of genetic knowledge of autism, this dissertation maps out, identifies and ultimately compares the various genetic interpretations in four different autism spectrum disorder (ASD) sites, including: health social movements concerned with autism and autism genetics ASD; scientists of various disciplines who study autism genetics; parents of children diagnosed with an ASD who participate in genetics research; and individuals experiencing ASD. Based on over fifty interviews with scientists, parents, and individuals with autism, and the incorporation of grounded theory methods, this dissertation literally “follows the DNA” in order to trace the heterogeneous processes of many institutions, people, theories, materials and practices involved in the production and representation of genetic knowledge. vi TABLE OF CONTENTS CHAPTER 1: INTRODUCTION, THEORETICAL CONSIDERATIONS, AND RESEARCH METHODS …………………………………………………………. 1 Glimpse of Genetic Interpretations ………………………………………….. 1 Background on Autism……………………………...………………………….. 5 Social Science Research on Autism…………………………………………….. 7 Autism Genetic Collections and Collaborations.……………………………….. 13 Sites of Linkages………………………………………………………………... 14 Theoretical Considerations……………………………………………………... 17 Symbolic Interactionism and Social Worlds/Arenas Theory….…………….. 18 Medicalization, Biomedicalization and Geneticization……………………….. 24 Biopower, Biopolitics, and the Technologies of the Self……………………… 30 Health Social Movements, Biosociality, and Genetic Citizenship…………… 34 STS and the Construction of Genetic Disease………………………………….. 38 Research Methods, Data Sources, Analysis……………………………………. 43 Methods……………………………………………………………………………… 43 Interviews……………………………………………………………………………. 44 Participant Observation…………………………………………………………… 47 Scientific Literature Review and Document Analysis………………………. 48 Analysis……………………………………………………………………………… 49 Chapter Outline…………………………………………………………………. 51 vii CHAPTER 2: COLLABORATIONS, CONSORTIA, AND COLLECTIONS FUELING AUTISM GENETICS RESEARCH ………………………………….. 54 “Cultures of Action”…………………………………………………………..... 56 National Alliance for Autism Research (NAAR)………………………………. 59 Consortium of Consortia………………………………………………………... 62 Implications of the AGP………………………………………….. 67 Challenges of the AGP……………………………………………………............. 69 Future of the AGP…………………………………………………………………. 72 Cure Autism Now (CAN)……………………………………………………..... 73 Autism Genetic Resource Exchange (AGRE)………………………………….. 74 Implications of the AGRE…………………………………………....... 78 Limitations of the AGRE……..…………………………………… 83 Future of the AGRE……………………………………………………………….. 86 Scientists vs. Parent-Initiated Research Agendas………………………………. 87 Health Social Movements ……………………………………………………… 91 Autism Health Social Movements…..…………………………………………… 92 Emotional Health Movements…………..…...……………………………… 97 Advancing the Research and Science of Autism………………………….......... 100 A Reversal of Power……………………………………………………………. 103 Infusing Community into Science.……………………………………………… 110 viii CHAPTER 3: GENETIC RECLASSIFICATION OF AUTISM SPECTRUM DISORDERS………………………………………………………………………... 119 Situating Autism Genetics………………………………………………………. 120 Implications of Funding Autism Research…………………………………........ 125 Autism Genetics Past…………………………………………………………..... 126 In Search of the ‘Autism Gene’…………………………………………………. 129 Autism Genetics Present………………………………………………………… 130 The Heterogeneity of Autism…………………………………………………… 132 Genomewide Association Studies……………………………………………..... 134 Copy Number Variation………………………..................................................... 137 A New Genetic Classification: 16p11.2 deletion……………………………….. 139 Questionable Approach to Science………………………………………………. 142 Genetic Reclassification of Autism Phenotypes……………………………….. 147 Convergence of Common Genetic Pathways…………………………………… 152 A Glimpse of Imagined Futures for ASD…………………………....................
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