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4S Preview: Situated Meanings of ‘Good’ Care and Science ‘Worth Doing’

Katherine Weatherford Darling, Natali Valdez, Emily Vasquez, Christoph Hanssmann, and Melissa Creary

29 July, 2016

We are publishing a series of posts highlighting some of the tracks on the program of the 2016 4S conference, which will convene jointly with the European Association for the Study of Science and Technology (EASST) in Barcelona, August 31-September 3. The theme of this year’s 4S/EASST conference is “science and technology by other means.” - Ed.

Over the course of five years, the different members of this panel have collaborated in transnational conferences, University of California STS retreats, and informal peer support groups. Natali, Kate, and Chris have also worked together through grant writing, qualifying exams, publications, and dissertations. Our group grew when we went to Brazil in 2014 for the Sao Paulo School of Advanced Sciences on Biotechnology, Biosocialities, and the Governance of Life Sciences workshop and met Melissa, who later that year connected with Emily at the joint 4S/ESOCITE meeting held in Buenos Aires. Then Emily traveled from Mexico to Santa Cruz in Spring 2016 to attend a meeting Kate co-organized at UCSC entitled Just Data? Justice, Knowledge and Care in an Age of Precision Medicine. Throughout our work and collaboration we have come to value feminist traditions of intellectual generosity and care, and this summer our travels take us to Spain. Our shared interest in centering issues of stratification and inequality within STS drives our upcoming panel in Barcelona, entitled “Situated Meanings of ‘Good’ Care and Science ‘Worth Doing’” at the 2016 4S/EASST Conference.

As a group we are interested in asking questions related to how unequal and stratified forms of knowledge are produced around the globe. Our panel seeks to explore situated, contested, and contingent moral understandings of good practice in both biomedical research and settings of biomedical care. Tracking the perspectives of scientists, physicians, nurses, patient navigators, expert activists, policy makers, and patients themselves across North and South America, our papers detail how actors craft understandings of their missions, their responsibilities and obligations. In their research and care practices they work out concerns about whose needs must be prioritized, what unintended consequences are acceptable, and what can legitimately be left "un-done" in diverse biomedical fields.

We’ve also been noticing the work that too often feels “un-done” within STS. Notably, in our journeys together we have encountered a recurrent set of responses to our projects. With regard to our work, we are frequently asked: What counts as STS?  Whose narratives should be prioritized in STS research? Where is the place for critical race studies in STS? To what extent are issues of social justice an STS concern? These are of course intertwined with the questions that form the empirical and theoretical bases of our work. As a result, our upcoming panel responds to these broader concerns relevant to the field of STS itself. We find, in particular, that the legitimacy or necessity of critical feminist and anti-racist STS interventions--a key element of STS's field formation--continue to be elided or dismissed. Are projects that focus explicitly on the gendered and raced forms of subjectivity and lived experience within technoscientific domains seen as "STS enough"?  In STS research, what is the right balance between ethnographic attention to scientists, investigators, and policy makers on the one hand, and participants, patients, and clinical trial subjects on the other? How might the methodological imperative to “study up” obscure some of the more vexed and complex relations of power that circulate among and between actors and collectives? These questions have also emerged as a framing for our panel.

We thus aim to highlight the intimate kinship between STS and feminist politics and analysis and the ways that these may push up against the boundaries of what counts as STS. Doing so also reminds us that there is no single STS--rather, STS is a tense and lively combination of methods, subjects, perspectives, theories, and approaches. For example, drawing on the feminist concept of stratified reproduction, stratified biomedicalization enables us to highlight the processual (re)production of inequalities along different axes (global South/North, raced/gendered bodies, hetero/queer norms) and within new identities and subjectivities. For instance, several of the panelists will explore how experts contend with stratified and stratifying biomedical technologies and practices, and who benefits. In addition, if we distinguish methodologically between biomedical care practices and biomedical research practices in our approaches, we risk reproducing the assumed division between theory and praxis. We focus on the domains of both research and care in order to expose the tensions within bioethical paradigms that encompass both science and medicine. In explicitly asking about how “good practice” is constructed across the domains of both biomedical research and care, we are invested in prioritizing feminist analyses. Doing so exposes the production of stratification and inequalities embedded in scientific knowledge production as well as biomedical care practices.

Each panelist takes up these feminist stakes and questions within their dissertation research and in their 4S/ESOCITE papers:

Kate’s work examines how nurses, social workers, and eligibility workers within the context of HIV care in San Francisco, California, construct collective identities through war metaphors like “triage” and “frontline workers” to voice and manage the scarcity of resources and the overwhelming demands on their time, care, and attention. On the margins of a city that helped make HIV a chronic condition, she asks, what counts as “good practice” when frontline workers in HIV clinics must daily confront their inability to care for everyone?

“Comfort Garden at a hospital in San Francisco,” Photo by Kate Weatherford Darling

Natali’s work examines how epigenetics simultaneously opens up and multiplies concepts of "the environment," as well as intensifies attention and anticipation around individual women. Her presentation in Barcelona will explore how certain economic, political, and scientific contexts influence what counts as the “environment” to target for intervention. Natali aims to highlight how narrow framings of the environment in epigenetic science (re)produces biopolitical forms of surveillance and control in  reproductive health and limits the possibilities of epigenetic knowledge production.

“Tools for Measuring Pregnant Women," Photo by Natali Valdez

Melissa’s work undertakes an examination of existing tensions between “bad science” and public good.  How might reductive, typological classifications used to define sickle cell disease in Brazil simultaneously manifest an increased awareness, free distribution of pharmaceuticals, and in better health outcomes generally for an otherwise marginalized segment of Brazilian citizenry?

“Waiting Room of City Clinic in Brazil,” Photo by Melissa Creary

Emily focuses on the scientific imaginaries—including the moral, political, economic, and technological imperatives and aspirations—driving investment in high-cost genomic science in a public children’s hospital in Mexico City, the first hospital nationwide to acquire and put to use a Next Generation genome sequencer for patient care.  Moving beyond traditional bioethics--typically centered on individual autonomy and protections--she explores broader moral questions that emerge as scientists in this hospital contended with which patients to prioritize for sequencing, how much of their budget to use for research versus clinical ends, how to balance uncertainty in their analyses against the high cost of sequencing a patient’s genome.

"Human genome sequencing in a Mexican public hospital," Photo by Emily Vasquez

Chris’ work looks to how assertions of reduced life chances make apparent to experts the gamut of forces that differentially harm marginalized gender non-normative subjects. As a mode of biomedical knowledge production, biopolitical biographies reveal some of the dynamics that lead to otherwise unlikely shifts in what counts as "good" knowledge, practice, and care.

In developing each of these papers, our approach to working together also aims to align care for each other with the questions and politics we aim to nurture in our distinct projects. We generated our panel and this blog through a series of video calls, in-person co-writing, vigorous comment threads, shared web-docs, uproarious rides to the airport and not enough beachside hangouts. These shared spaces and questions make STS worth doing.

Katherine Weatherford Darling (UC San Francisco / UC Santa Cruz) @kwdetal

Natali Valdez (UC Irvine / Rice) @anthro919

Emily Vasquez (Columbia University / UNAM)

Christoph Hanssmann (UC San Francisco)

Melissa Creary (Emory / University of Michigan) @lillissa05

Backchannels / Projects

Descriptions of current work—the makings and doings—of STS scholars across the globe. This includes individual work, as well as collaborations between / with academics, practitioners, and policy makers.