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- Convenors:
-
Emily Vasquez
(Columbia University)
Natali Valdez (Purdue University)
Katherine Darling (University of California, San Francisco)
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- Stream:
- Tracks
- Location:
- M215
- Sessions:
- Saturday 3 September, -
Time zone: Europe/Madrid
Short Abstract:
This panel pushes beyond traditional bioethical regimes to highlight situated, contested and contingent moral understandings of good practice in biomedical research and settings of biomedical care. How do experts contend with stratified and stratifying biomedical technologies and practices?
Long Abstract:
This panel explores understandings of good practice in two interrelated scientific domains: biomedical research and settings of biomedical care. Following Fortun & Fortun (2005), we attend to the subjectivities of biomedical scientists, physicians, nurses, patient navigators, expert activists, and policy makers. These papers trace how these actors "understand, strategize, and take responsibility for their own situatedness in social context" (Fortun & Fortun, 2005: 44), how they come to define for themselves 'good' care or science 'worth doing', and the ethical or moral choreography that this entails (Thompson, 2013). With ethnographic care, we detail how these actors craft understandings of their professional missions, their responsibilities and obligations, what kinds of research questions should be asked, whose needs must be prioritized, what unintended consequences are acceptable, and what can legitimately be left 'un-done'. We are especially interested in how these actors contend with stratified and stratifying biomedical technologies and practices. Further, we explore how their notions of good practice are entangled with the production of broader understandings of bodily, differences, inequalities in health and care, and visions of justice in these settings. In doing so, we move toward a framework that pushes beyond traditional bioethical regimes to highlight more situated, contested and contingent moral dimensions that underpin understandings of good practice in these domains. These ethnographies amplify currents in STS that have unraveled the universality and neutrality of biomedicine and more recently bioethics to show how they are inflected by the moral commitments and situated subjectivities of biomedical scientists and healthcare providers.
Accepted papers:
Session 1 Saturday 3 September, 2016, -Paper short abstract:
This paper examines how health care providers at a safety-net HIV clinic describe their job in terms of “triage work” and create collective understandings of their role as “frontline workers”. I argue that triage work mediates contested visions of urgency and confronts scarcity.
Paper long abstract:
This paper discusses how healthcare workers at a safety-net HIV clinic in San Francisco define their jobs through "triage." Ethnographic interviews and observations reveal how patient navigators, social workers and nurses organize themselves through the collective identity of "frontline workers," and use "triage" to describe numerous facets of their work: "triaging e-mail", "triaging insurance," and creating "triage algorithms" to assess patients' needs. I show how their "triage work" often reaches well beyond the small triage room. I follow triage as practice and analytic for feminist STS (Thompson, 2013). While the implied pace of HIV treatment is rapid and urgent--public health imperatives compel treating people soon after an HIV diagnosis—frontline workers feel swallowed by the tedious and sluggish administrative process of "triaging insurance". Triage metaphors help frontline providers to voice and manage the overwhelming demands on their scarce time, care and attention in the context of an onslaught of patient needs. Strategically, triage mediates the everyday flow of patients and the overflow of information, needs and bodies generated within biomedical bureaucracies. Frontline workers thus become responsible for prioritizing the needs of people who have already been "socially triaged" in the name of efficiency (Sjoberg, Vaughan and Williams, 1984) well before the clinic's doors open. I argue that in this situation, triage becomes a political critique of the limits and possibilities for care work in the confines of stratifying biomedical bureaucracies. Triage work, in this sense, is a technique for confronting scarcity through stratified care.
Paper short abstract:
How are efforts to make “good science” motivated by “good intentions” challenged by current political and economic climates? This paper addresses this question in the setting of epigenetic research paradigms that target women’s bodies as fetal environments.
Paper long abstract:
Epigenetics, the emerging study of gene-environment interaction and genetic expression, is changing the way pregnant women are treated, cared for, and studied. My research explores clinical trials that use epigenetic theories to test nutritional interventions on pregnant women deemed obese. During 2012 and 2014, I collected ethnographic data at two clinical trial sites, one in the U.S. and one in the U.K.
Through epigenetics we understand that the environment of a mother or pregnant woman is important to future development, and we can also understand women's bodies as environments. If taken seriously, epigenetics simultaneously opens up and multiplies concepts of "the environment," as well as intensifies attention and anticipation around individual women.
For this paper I draw from ethnographic data collected at each clinical trial to explore the motivations behind the design and implementation of the clinical trials. I find that the political and economic climate characterized by a cost-benefit analysis of health treatment, challenges the meaning and method of producing "good science". As a result, the interventions are disconnected from broader scales of the environment, living conditions, and cultural context. The unintended consequence of targeting pregnant women for intervention is that women end up being blamed for the adverse health outcomes of their future children. I conclude by discussing the potential benefits of bridging science and technology approaches with a focus on the subjectivity and experiences of not only scientists that design clinical trials, but also the pregnant women enrolled in in the co-production of scientific knowledge.
Paper short abstract:
Set against national economic crisis and sharp cuts to public health system’s budget, this paper explores the emergence of high-cost Next Generation genome sequencing as a valuable scientific enterprise in a Mexican public children’s hospital.
Paper long abstract:
In January of 2015, a public children's hospital in Mexico City became the first Mexican hospital to acquire a Next Generation genome sequencer for use in patient care. The acquisition of this sequencer, with the capacity to sequence a full human genome within 29 hours, represented a major step toward incorporating a molecular-level vision of the body into diagnostics and treatment. However, set against a national economic crisis and an overall 20% cut to this hospital's budget in 2015, the hospital's board of trustees' initial investment of US$250,000 for the sequencer and an additional US$130,000 budget for laboratory costs in the first year, stood out as a significant financial investment.
Drawing on nine-months of ethnographic fieldwork in this institution, this paper explores the diverse imaginaries that justified this investment and inflected the day-day-work of scientists trying to make genome sequencing clinically useful in this public hospital setting. Moving beyond a traditional bioethics framework, I describe a broader moral economy that emerged as these scientists contended with which patients to prioritize for sequencing, how much of their budget to use for research versus clinical ends, how to manage uncertainty in their analyses of clinical cases, and how best to argue that Seguro Popular (Mexico's most basic public insurance) cover genomic testing. Tracing high-cost genome sequencing's emergence as a valuable enterprise in this resource-constrained context deepens understanding of the implications of genomic medicine and its incumbent technologies outside of the world's wealthiest nations.
Paper short abstract:
This paper addresses how transgender social movement activists strategically address social devaluation by leveraging “biopolitical biographies” to make demands for biomedical recognition through technoscientific progress, health care access, and new biomedical classifications.
Paper long abstract:
The notion of "biography" forms a critical analytic tool in medical sociology (Charmaz 2002). STS scholars are also interested in biographies and the way they fit—or fail to fit—within classification systems (Bowker and Star 1999). Yet less is known about how biographies are tactically deployed by those for whom classification is a problem. This paper thus examines how transgender social movement activists mobilize biographies biopolitically and strategically to influence knowledge production in ways conversant with their political demands. This paper looks empirically to transgender activism in Buenos Aires and New York that mobilizes a 'popular epidemiology' (Brown 1997) of reduced life chances as a problem requiring more robust forms of biomedical legibility and recognition. Drawing from ethnographic interviews and participant observation, I discuss how in these settings 'biopolitical biographies' comprise a salient mode of political and ethical redress to make apparent to experts the gamut of forces that differentially harm marginalized gender non-normative subjects. I examine how biopolitical biographies center issues that are typically excluded from the biomedical purview, such as racialized criminalization, economic marginalization, and sexualized violence. Ultimately, the paper argues that studying the mobilization of biopolitical biographies reveals some of the dynamics that lead to otherwise unlikely shifts in what counts as 'good' biomedical knowledge, practice, and care.
Paper short abstract:
This paper explores tensions in Brazilian policy for sickle cell disease (SCD). The policy addresses SCD typologically, locating it in blackness, while also producing the public goods of education and treatment. How does a policy based on “bad science” offer promise and peril to its constituency?
Paper long abstract:
Sickle Cell Disease (SCD) is often ascribed to African ancestry, however it is a marker for ancestry in a geographic location where malaria is or was prevalent. In 2006, the committee that developed the Brazilian National Health Policy for the Black Population (NHPBP) chose SCD as their "flag to demand health rights." Subverting its biological underpinnings, activists in collaboration with the State have constructed SCD as directly and exclusively tied to African ancestry and the black Brazilian body. I argue that in this instance, these actors used "bad science" - reductive, typological classifications - to create a public good as manifested in increased awareness, free distribution of pharmaceuticals, and better health outcomes for a segment of Brazilian citizenry.
The arguments made to justify the inclusion of SCD within the NHPBP linked race, culture, and genetics. This linkage, at least between race and genetics, has long been made for SCD—historically believed to only manifest in Africans and those of African descent before it became understood as a molecular disease. The use of "bad science" in this context harkens back to the racial science of the 19th and early 20th century. The policies of nation-states that stemmed from this time period were created to limit and control "the boundaries of inclusion and citizenship," often of those considered non-white (El-Haj, 2007). In this present-day translation, we observe activists and health policy makers' "commitment to race as a molecular attribute" (El-Haj 2007) in the creation of routes to access and citizenship for Afro-Brazilians.