Copyright by Imanni K. Sheppard 2018 The Dissertation Committee for Imanni K. Sheppard certifies that this is the approved version of the following dissertation: The Parallax of Personalized Medicine: A Critical, Socio-Medical Analysis of the Trajectory of Pharmacogenomics and Genome Wide Association Studies Committee: Jerome Crowder, PhD, Chair Evelyn Bernadette McKinney, JD, PhD M. Kristen Peek, PhD Janis F. Hutchinson, PhD David W. Niesel, PhD _______________________________ Dr. David W. Niesel Dean, Graduate School The Parallax of Personalized Medicine: A Critical, Socio-Medical Analysis of the Trajectory of Pharmacogenomics and Genome Wide Association Studies by Imanni K. Sheppard, BA, MA Dissertation Presented to the Faculty of the Graduate School of The University of Texas Medical Branch in Partial Fulfillment of the Requirements for the Degree of Doctorate of Philosophy The University of Texas Medical Branch 2018 Dedication As children, my siblings and I always had the sixty-four box of crayons with the sharpener in the back. When I drew my mother, I’d color her in the shade called Burnt Sienna. It reminded me of the gold undertones in her complexion mixed with the color of red beans and rice—like the kind she managed to get in her hair that day we went to see Wanda Rouzan in the park during French Quarter Fest. I was six. We were all dressed alike. We laughed until tears filled our eyes, our stomachs cramped, and we could no longer produce sound. More than thirty years later, when the cancer treatments charred her skin until it peeled and flaked off of her body, I cried at the prescience of a child’s color choice. As a teenager, when I wanted to look like her, I’d put on red lipstick and brightly colored sun dresses—like the kind she always reapplied and wore before bed, respectively. The causality? One day, when she was a teen, there was a fire in her neighborhood. She went outside to join her neighbors and saw the boy she liked from school. He laughed at how ridiculous she looked. She vowed never to be caught off-guard again. Twenty years later, that boy… the boy became my father. Life is funny that way I suppose. As an adult, when I want to be her, I put on some hoop earrings and find a quiet place to read a book about history, education, philosophy, or revolution. I analyze the details of them and laugh aloud at the interesting parts…carelessly, freely, knowingly as if the words have just revealed some ironic but timely truth that tickles the part of me captivated by the complexities of the subjective perspective. She said that sometimes their lunacy, lack of consciousness, ethics, or morality triggered a morbid laugh like the caged bird singing. Sometimes in the silence I’d hear her scribbling thoughts on the inside of pages she would not soon read again. I thought perhaps they were for one of us. So, I read them in a quiet place and laugh aloud at the passions of her critiques written in response to an author who would never hear them. I highlight her scratch in bright yellow and respond accordingly. It is the intergenerational destruction of our properties or perhaps the continued dialogues of lives lived in color. I am grateful for that. I love you, mom, through all space, time, and texts. This one I dedicate to you. Rest in Peace. Acknowledgements To all of my friends, family, colleagues, professors, and mentors who guided me, encouraged me, cared for me, and made me laugh when tears were all I could muster, thank you. You know who you are. It was often in the simplest gestures and most sincere acts of kindness that you helped to remind me of who I was capable of being. For that, I am grateful. To my favorite person in all of the universes—known and unknown. I love you unconditionally, “Moss,” through all spaces and times, and for every nanosecond of your existence. You are my son, my life, and my breath. I am absolutely grateful that you came into my life. To one of my oldest and dearest friends, and to the former love of my life—both of whom passed away during this journey of mine…this dream of mine—it has been in your light, your love, your memory, and the resilience you helped me to develop that I have been able to embrace the awe of life’s finitude. I nojokhee mithyane eh saad. 5 The Parallax of Personalized Medicine: A Critical, Socio-Medical Analysis of the Trajectory of Pharmacogenomics and Genome Wide Association Studies Publication No._____________ Imanni K. Sheppard, PhD. The University of Texas Medical Branch, 2018 Supervisor: Dr. Jerome Crowder Abstract While neoteric medical technologies in the United States are heralded as fundamental to medical progress, they may simultaneously work to facilitate the victimization of people who do not have access to that progress. For example, the use of race and racialization as molecular and biological concepts in genomic based scientific and medical processes like pharmacogenomics and Genome Wide Association Studies (GWAS) may further perpetuate medical inequity, health disparities, and discrimination. Thus, it is important that we (in the medical community) acknowledge and delegitimize the use of race and racialization in science and medicine in order to help mitigate their potential socio-medical impact. When we, in the medical community, actively work to deconstruct and decentralize the use of race and racialization in science and medicine we may also begin to delegitimize their associated medical and socio-medical health disparities. To this end, my dissertation is a critical analysis of the trajectory of pharmacogenomics and Genome Wide Association Studies—keeping in mind the potential socio-medical affects of their use of race and racialization as molecular and biological concepts. My examination was done through the triangulation of qualitative research with an appraisal of the historical and contemporary medical, socio-medical, and biomedical epistemologies, philosophy, and practices of the scientific, and medical endeavor. 6 TABLE OF CONTENTS Chapter I: Introduction ………………………………………………………......... 11 Chapter II: Literature Review………………………………………………….. …. 29 Chapter III: Theory-Thanatopolitics ………………………………………………. 48 Chapter IV: Medical and Socio-Medical Affects of Thanatopolitics..……………. 71 Chapter V: Methods and Qualitative Data Analysis ………………..…………..... 136 Chapter VI: Attitudinal and Freelist Data Analysis………..................................... 180 Chapter VII: Conclusion …………………………………………………………. 221 Bibliography ……………………………………………………………………... 225 Appendix i: Questionnaire and Freelist Prompts …………………………........... 258 7 LIST OF TABLES Table 1: Respondent Self-Identified Sociodemographic Data ……………………….. 143 Table 2: Aggregate Tonal Analysis ………………………………………………….. 179 Table 3: Participant Attitudinal Responses Regarding the Subjectivity of Science and the Practice of Medicine …………………………………………………………………. 182 Table 4: Respondent Attitudinal Responses Regarding Race, Medicine, and Genetics 191 Table 5: Respondent Attitudinal Responses Regarding Access and Cost of Healthcare and Healthcare related services ……………………………………………….............. 201 Table 6: Responses to Freelist Prompts ……………………………………………… 203 8 LIST OF ACRONYMS ACA Patient Protection and Affordablity Care Act [“Obamacare”] ACIP Advisory Committee on Immunization Practices ADA Americans with Disabilities Act CBO Congressional Budget Office CDC Center for Disease Control CKD Chronic Kidney Disease CRC Cladistic Race Concept DNA Deoxyriboneucleic Acid DOE Department of Energy EEOC Equal Employment Opportunity Commission ELSI Ethical, Legal, and Social Implication [of the human genome project] ESRD End Stage Renal Disease GAO Government Accountability Office GWAS Genome Wide Association Studies GINA Genetic Information Nondiscrimination Act HGP Human Genome Project HIPAA Health Insurance Portability and Accountability Act H.R. 1628 American Healthcare Act JCT Joint Committee on Taxation 9 NHLBI-CARe National Heart, Lung, and Blood Institute-Candidate-gene Association Resource NIH National Institute of Health NTI Narrow Therapeutic Index (drugs) OMB Office of Management and Budget OTA Office of Technology Assessment QALY Quality-Adjusted Life Years rDNA Recombinant DNA RNA Riboneucleic Acid SAKC Seattle Artificial Kidney Center SNP Single Nucleotide Polymorphism 10 Chapter I: I NTRODUCTION My interest in the socio-medical effects of pharmacogenomics and genome wide association studies began with the basic premise that medical progress does not affect all people equally. Some of the methodologies and epistemologies of pharmacogenomics and genome wide association studies, for example, use race and racialization as genetic variables within every stage of research, development, and interpretation. In doing this, pharmacogenomics and genome wide association studies reify social ideologies that note race and racialization as molecular and biological concepts. As such, the knowledges that come out of those kinds of genomic processes are poised to not only teach and reinforce pre-existing racial dichotomies but also to legitimize the view that the socio- historical and biologized races of men exist on a continuum of humanness. These ideas are not an assessment of human variation. Instead, as the progress and promise of genomic medical technologies potentiate a better quality of life for some people, their assumed objectivity will legitimize negative race based and racialized ideologies for other people. It is in the possibility and probability of those instances in which medical inequity, disparity,