All in Your Head: Making Sense of Pediatric Pain
This book project draws on 18 months of fieldwork in a multidisciplinary pediatric pain clinic and close analyses of clinical language to explore how clinicians, adolescent patients, and their families understand intractable pain and explain puzzling symptoms. The book is premised on the assumptions that chronic pain is one of the last great medical mysteries, and that explaining this mystery takes significant cultural and interactional work. The working title references its exploration of two related themes. First, it examines how cultural models of and metaphors for mind and brain are mobilized in explanations of pain. Secondly, it explores longstanding anthropological questions about how people assign meaning and causality to illness and misfortune. By illustrating how different explanatory frameworks for chronic pain (e.g. neurobiological, psychodynamic, and societal stress) become foregrounded by clinicians and families at different points in the therapeutic process, I suggest that there is seldom a single explanation for pain. Instead, I argue that causality is best understood in terms of a shifting constellation of explanatory factors that become mobilized for different pragmatic purposes.
The Consequences of Newborn Genetic Screening
Mara Buchbinder, Stefan Timmermans (UCLA)
This project examines how clinicians, patients, and families work to align the promise of medical technologies as formulated in the policy arena with the realities of their implementation in the clinic. Our book, Saving Babies? The Consequences of Newborn Genetic Screening (University of Chicago Press, 2013), examines the recent expansion and standardization of state-mandated newborn screening programs in the United States. Drawing on three years of ethnographic research in a California metabolic-genetics clinic (2007-2010), we describe how parents and geneticists together resolve multiple diagnostic, prognostic, and epistemic uncertainties associated with the introduction of new screening technologies. We argue that, contrary to the position of vociferous advocacy groups, newborn screening cannot on its own save lives. Many other factors must be in place for the putative “benefits” of newborn screening to be realized, and these benefits come with a host of unanticipated consequences—such as deeply ambiguous results and inadequate access to treatment—that have received far too little attention from policymakers. Therefore, newborn screening exemplifies the unsettling paradox of investment in high-tech medicine while ignoring the provision of more basic healthcare needs.
Factors Affecting Healthy Volunteers’ Long-Term Participation in Clinical Trials
Jill Fisher (PI)
Social Medicine Collaborators: Arlene Davis, Malika Roman Isler, and Rebecca Walker (CIs)
Funded by the National Institute of General Medical Sciences (NIH) as an R01, this project investigates healthy volunteers’ patterns of participation in Phase I clinical trials, with particular attention to the differences among minority groups. The majority of healthy volunteers in clinical trials are serial participants, meaning that they enroll repeatedly in studies, so the research has a longitudinal design to understand volunteers’ patterns of participation in clinical trials. The project has four primary aims: (1) Assess how participants’ perceptions of the risks and benefits of Phase I participation change over time; (2) Examine how participants make decisions regarding their participation in clinical trials – including continuing serial participation – and assess the consistency of their choices over time; (3) Document how participants’ self-reported behaviors (a) affect the validity of clinical trials and (b) increase and/or mitigate harm that could come from serial participation, including behaviors that have health benefits; and (4) Compare participants’ perceptions, decisions, and behaviors across racial and ethnic groups.
Gail Henderson (PI)
Social Medicine Collaborators: Mara Buchbinder, Jean Cadigan, Giselle Corbie-Smith, Arlene Davis, Gail Henderson, Eric Juengst, Dan Nelson, Malika Roman Isler, Rebecca Walker (CIs)
The Center for Genomics and Society at UNC-Chapel Hill (CGS) was funded as a Center for Excellence in Ethical, Legal and Social (ELSI) Research in 2007. Housed in the Carolina Center for Genome Sciences, the CGS has a current roster of 20 investigators and 7 trainees, who represent multiple disciplines. Our mission is to conduct transdisciplinary, policy-relevant research and to provide training on the ELSI issues raised by large-scale genomic studies and next generation sequencing.
Gail Henderson (PI)
Social Medicine Collaborators: Jean Cadigan, Arlene Davis (CIs)
This is an NHGRI-funded study, also supported with funds from a national CTSA supplement. Using data from six case studies and a survey of 456 US biobanks, we describe organizational characteristics, policies and practices of US biobanks, and address broad ethical and legal concerns about 1) ownership, 2) informed consent, 3) data sharing and use, 4) security and confidentiality, 5) return of results, and 6) community engagement in the design and future direction of research. Guidelines, practice standards, and a variety of policies have been proposed for biobanks, but there is no unifying guidance in the US; thus biobank administrators face considerable challenges to developing appropriate practices and policies, a subject of a proposal we are currently developing.
North Carolina Clinical Genomic Evaluation by NextGen Exome Sequencing (NC Genes)
Gail Henderson (PI for Project 3)
Social Medicine Collaborators: Giselle Corbie-Smith, Eric Juengst, Arlene Davis, Dan Nelson
Awarded in 2011, NCGENES is part of a U01 consortium funded by NHGRI to explore the clinical application of next generation sequencing. NCGENES Project 3 employs a theoretically-grounded multi-method approach to address the ethical, psychosocial, and behavioral implications of the production of diagnostic and incidental information through whole exome sequencing (WES) in a clinical setting. We use qualitative and quantitative methods to identify benefits and harms of providing WES diagnostic and incidental findings to patients, and employ a randomized longitudinal design for adult participants to investigate what types of WES results patients wish to receive, and assess the impact of being offered a choice to receive incidental findings or not. Inclusion of adults and children with a range of medical conditions and inclusion of medically underserved populations enhances the generalizability of results to clinical practice. We utilize ethnographic observational methods to track the development of the WES results classification system and how it is communicated and used from the lab to the clinician and patient.
Less is More: Global Family Planning in Peru, 1919-1979
Fifty years after the implementation of the earliest family planning initiatives worldwide, the end of the Cold War and the availability of new archival sources have allowed us to acquire some historical perspective on the foundations and global implications of family planning. The Cold War may have exacerbated population debates, but family planning programs were no simple products of Cold War antagonisms. Instead, this book project traces their origins further back, to the socio-cultural ferment that shaped gender roles, racial stratification, and political activism in specific locales in the early 20th century. The book delves into neglected Latin America to ask how the regulation of fertility became an engrossing aspect of the region’s public life, using Peru as the springboard from which to draw comparisons across the continent.
Science and Medicine in Cold War Latin America
This volume, co-edited with Anne-Emanuelle Birn, focuses on science and medicine in Cold War Latin America as a particularly important site in which to analyze the strategies different groups of local, transnational, and foreign actors used to manipulate the rivalry between the U.S. and the U.S.S.R. to suit their own cultural dispositions or to further their professional, institutional, national, and regional interests. Far from a mere contextual backdrop, the Cold War was a complex component of scientific and health regimes that endure to this day, including the management of disease eradication campaigns, scientific funding mechanisms, population policies, and corresponding subaltern mobilization to offset environmental, political, and economic changes.
Stuart Rennie (co-PI), Joseph Tucker (co-PI)
One of the defining qualities of living with HIV has been that it is incurable, and this tenet has powerfully formed and disrupted individual, organizational, and institutional identities. But recent medical advances have contested this basic fact, and now HIV cure research, once unimaginable, is at the center of public and scientific attention. On both clinical and public health grounds, the identification of an effective HIV cure would be a great achievement. At the same time, curing HIV is best conceived not simply as an absolute medical victory, but also as a social intervention whose meaning and effects are complex and uncertain. The goal of this working group is to investigate these complexities and uncertainties, drawing on the input and expertise of a diverse group of global HIV stakeholders. Throughout our project, we aim to develop a theoretical framework about HIV cure research and early implementation using historical, conceptual and ethical data; determine HIV cure stakeholder perspectives on cure research and early implementation; and develop an online forum to promote stakeholder engagement focusing on the social and ethical implications of HIV cure research. Our three research sites—located in Cape Town, South Africa; Chapel Hill, USA; and Guangzhou, China—give us an opportunity for powerful cross-cultural comparisons, which will help us us identify intersecting themes about unintended implications of HIV cure. This work will provide a strong foundation for subsequent HIV cure research and early implementation around the world.
Strengthening Behavioral and Social Science in Medical School Education
Sue Estroff (PI), Barry Saunders (co-PI), Ann Lambros (co-PI, Wake Forest University School of Medicine)
Jeffrey Sonis, Terrence Holt, Kurt Gilliland, & other many UNC faculty members (including most of Department of Social Medicine)
This is a 4-year UNC School of Medicine training and research project (April 2011 through March 2015) funded by NIH OBSSR (via R25 mechanism). It builds on previous NIH-funded (K07) efforts to develop and strengthen teaching of behavioral & social sciences at UNC, now in cooperation with partner institution Wake Forest University School of Medicine, with a larger consortium of 14 medical schools across the US. Many UNC faculty collaborators are participating in a wide range of curriculum- and faculty-development efforts through a sustained process of UNC SOM educational program renewal. Topical engagements include LGBTQ health, “racial” health disparities, “professionalism,” population health, health organizational sociology, and much more.
Incorporating STS Perspectives in Medical School “Basic” Science Education
Barry Saunders, Jill Fisher, Raúl Necochea, Mara Buchbinder, Sue Estroff, Stuart Rennie
This project is conceived as a part of the above-mentioned NIH R25 grant-supported effort to improve behavioral & social science education in medical school. In pre-clinical medical curricula, social factors tend to be addressed in relation to patient experiences, clinical decision-making, and their organizational contexts. Social dimensions of “basic” scientific work and the technologies that enable it are largely elided. This is somewhat clumsy, given contemporary intellectual contexts elsewhere in the University: medical students will benefit from more nuanced, sociologically-informed discussions of sciences and technologies, such as those taught in the young academic inter-discipline of “science, technology, and society” (STS). This project aims to improve UNC science faculty capacities to address social dimensions of scientific practice through a range of consultations and teaching partnerships involving Social Medicine faculty; it will draw on expertise from other centers of STS excellence like Brown and Stanford Universities. Research products will include a provisional “syllabus” of STS topics in medical education and an empirically-derived pedagogical toolkit.