Session Organizer: John Parker
Discussant: Martine Lappe
Discourses and Practices of Race, Ethnicity, Ancestry, and Genomics in Hawaii
Joan H. Fujimura and Ramya M. Rajagopalan
Feminist, Generative Sociotechical Dissent: Seed Politics in Colombia
Kelly Moore & Nathalia Hernandez Vidal
Uncertainty and the Inconvenient Facts of Diagnosis
Assistant Professor of Sociology and Science, Technology and Society
Cal Poly, San Luis Obispo
It’s a pleasure to have the opportunity to discuss these three wonderful papers. I want to thank the authors for their presentations, John for inviting me to be the discussant, and everyone for attending.
The papers in this open panel address themes of crucial importance to the sociology of science, knowledge, and technology. They provide perspectives on enduring concerns in our field, and shed light on what I think are some critical directions for future study, as well.
These include, race, genomics, and classification, expertise, feminist and indigenous knowledge, and the importance of these perspectives in shaping theories of dissent, and the ways in which diagnosis and uncertainty are intertwined in upholding medicine’s power. These are all areas of longstanding interest in SKAT, but I think are of particular relevance in the context of the pandemic and calls for racial justice that we’re experiencing today. And I think these papers each have something really valuable to say about our current moment, even though they address quite different topics.
In the time I have, I will discuss each paper in the order they were presented, providing specific questions for the authors and some connections between them, then we’ll open it up to the authors and audience for the larger discussion. Before I do so, I think it’s helpful to say a few words about my own positionality.
I am an Assistant Professor of Sociology and Science, Technology, and Society at Cal Poly-San Luis Obispo and my research focuses on lived experiences of science and medicine. I’m particularly interested in the gendered and temporal dimensions of postgenomic research and have studied these topics in the context of autism research and, more recently, environmental epigenetics. So, I approach these papers from a feminist STS and medical sociology perspective and was really excited to see so many themes in them that I think are crucial for our field, as I’ll discuss now.
First I want to talk about Joan Fujimura and Ramya’s Rajagopalan’s excellent paper “Race, Ancestry, and Genomics in Hawai’i: Discourses and Practices.” In this work, the authors examined how specific notions of race became embedded in one of largest and longest running “multi-ethnic cohort” studies in relationship to the HapMap Project, entrenching the notion of race as innately biological and genetic,” despite researchers’ claims to the contrary.
The authors’ analysis contributes to work in STS focused on the social processes and consequences of genomic research, especially in relationship to race and classification. Here though, they’ve done something that I think is unique and important. Rather than looking at genomics research as their starting point, they focus on how an epidemiological cohort originally constructed in the particular historical and social context of Hawai’i, was transformed into genomic research, and the consequences this had when specific notions of ‘population’ became embedded in that study.
Their paper does a really thoughtful job of drawing on their own foundational work on race and genomics, Steven Epstein’s research on inclusion and difference, and Donna Haraway’s notion of “dominant concepts defining different eras,” among others. In doing so, they show how – in the 21st century – race, population, and the genome, three distinct conceptual eras in Haraway’s previous work, have now become intertwined via Genome Wide Association Studies (GWAS).
Their argument illustrates how a “socially, situationally, and historically constructed concept (race) and its related racialized categories have been used to develop ‘populations’ in epidemiology and in statistical genetics research.” They point out that there is no ‘natural definition’ telling scientists what is and what is not a population – rather, “through the work processes they engage in and the tools they craft and use, researchers decide who constitutes a population, and what defines a population’s boundaries.” In showing us how this takes place, they illustrate how “race creeps into the production of population categories” and its effects on how ‘diversity’ is constructed in research.
After reading this engaging and well-written paper, I was left still wanting to know more. Which I think is a reflection of great research.
First, I was interested in how MEC was initially transformed from a local study with representing particular ethnic groups into a multi-sited cohort through the combining of the Hawai’i-based samples with samples from a cohort in Los Angeles. The authors talk a bit about this in their paper and presentation, but I’d love to hear more about whether there were points of tension that played out in this transition and how the researchers responded to the shifting meanings of population that resulted. Further, do you think “diversity” could have been imagined and enacted otherwise in this case? Are there other examples of multi-ethic cohorts that have remained unaffected in the ways this study was?
Second, how have investigators and participants been affected by this transformation? The authors do a fascinating job of unpacking the notion of Hawai’i as a ‘natural laboratory’ in their article – and I’m curious about how research participants have interacted with this notion.
And finally, the processes you describe here illustrate how genomics constructs and reifies the forms of difference that are made to ‘matter’ in health research. This is of ongoing concern in “big data” projects, and also in the context of how COVID-19 health disparities are being accounted for – or not – in terms of data gathering today. So, I’m curious what lessons you think your case study might hold for preventing the biologization of race in relationship to the pandemic and for future health research? And I’m excited to hear your thoughts after these comments.
In Nathalia’s Hernandez Vidal and Kelly Moore’s paper, “Feminist, Generative Sociotechnical Dissent,” they focus on the “seed schools” that are part of the Network of Free Seeds of Colombia – or what they refer to as RSLC in their analysis. Their paper conceptualizes a form of sociotechnical resistance that draws “on feminist scholarship to call attention to the important role that kinships of various kinds… temporalities, and affectivities have in the creation of generative projects.”
This paper was a pleasure to read – perhaps especially at a moment when we are in the throes of so many necessary forms of dissent, and still in need of radical change. Their concept of feminist generative sociotechnical dissent speaks back to theorizations that focus on institutions and centralized forms of power/knowledge by “emphasiz[ing] the social and affective qualities of political life, the centrality of relationality rather than individualism, and the processes as well as legal and material outcomes delivered by nation states and other rules.”
Their paper does an excellent job of describing the history of state violence and systemic repression that led to RSLC, as well as the forms of intergenerational knowledge, expertise, and human/non-human connections that sustain it. They accomplish this in part by showing “that feminist, generative aspects of dissent are concerned not with knowledge making in the present, but draw on the past, and anticipate futures” and pay attention to reformations of the bios, and various forms of human/non-human kinship. They are therefore “concerned with longer time frames than what we normally see in STS… kinds of time that are lodged in longer memories of pasts, and in expectations of longer-term futures.” As such, their work extends feminist, indigenous, and critical race STS scholarship in ways that I think are critical to the moment we are living in, and for the directions that STS is headed.
Toward the end of the paper, the authors note the gendered qualities of the schools. They state, “the seed schools have not upended economic and gendered relations at the household level, but they have helped make the situation visible and thus, perhaps for the first time, also help campesinxs to dissent from the gendered organization of work and family.”
I am interested in these intertwined dimensions of the seed schools – some of the preservation of gendered norms alongside the collective resistance and shared knowledge, and I’d be excited to hear you both talk a bit more about how to think about gender and temporality in that context.
Further, I would love to hear the authors reflect on what additional ethnographic data might bring to the arguments developed in this paper. Are there insights from Nathalia’s field notes that could illustrate the intergenerational or human/non-human dynamics at play in the day-to-day interactions and operations of the seed schools? And how might those dynamics add to future chapters or other articles that develop from this study?
Finally – and similarly to the final question I asked of the last paper – I am curious what you think we could learn from the seed schools during this particular moment in history? Your paper draws attention to “the power of community driven and distributive epistemic projects in providing communities with what they need, now, and refuse[s] longstanding dichotomies…” As such, these sites of feminist generative dissent and collective knowledge production seem not only to be critical for those within them and for the communities that they sustain – but also something we should all learn from.
The final paper is Annemarie Jutel’s “Uncertainty and the Inconvenient Facts of Diagnosis.” This paper draws on her foundational work on the sociology of diagnosis and that of others including Phil Brown and Owen Whooley on ignorance. In it, she “explores how the notion of uncertainty is implemented to protect medicine’s diagnostic underpinning when it appears to be inadequate.” The analysis speaks to key areas in the sociology of science, knowledge, and technology and medical sociology – providing a historical analysis of uncertainty in medicine, and its effects.
Through this paper, she argues that uncertainty is “a salient way in which physical medicine deals [with and] justifies its shortcomings.” She shows that the use of the term is “an epistemic defense… a way of accounting for the limitations of the medical paradigm to explain all problems of health and illness, by transferring the responsibility for non-diagnosis to a cognitive domain.” At the beginning of the longer paper, she reminds readers about the powerful social, professional, and epistemic role of diagnosis in medicine. Stating,
“diagnosis is medicine’s primary classification tool. It determines treatment and prognosis, allocates resources… determines what counts as disease, [is] the ‘truth’ of medicine…” and creates “order out of a picture of disarray.”
Her analysis takes us on a historical journey that suggests the “contrasts and similarities” in how uncertainty is characterized in medical writings from the 1800s through today. In it, she sees evidence that, “both the historical and the contemporary practitioners of medicine have found ways to account for the flaws of the diagnostic paradigm. Far from discarding diagnosis as a way of practicing medicine, both have confirmed its power.”
This is well illustrated with the quotes she describes in medical texts, and also in the recent rise of “medically unexplained symptoms” (MUS) in the literature. Rather than reflecting the limitations of diagnosis, this category and its growth over time “confirms the power of diagnostic medicine” by creating a new and widely used classification – another kind of diagnosis – in place of uncertainty.
Her paper illustrates how “uncertainty is a way of deflecting threats away from the field as a whole, looking carefully, instead, at the individual practitioner.” She concludes that, “a better stance for the preservation of medical epistemic authority in the face of its inherent shortcomings might be to distance the field from diagnosis, and to be transparent about the limits of medicine.”
As I read, I was interested in what this alternative would look like in practice. What other norms and expectations would have to be reimagined – in terms of insurance systems, patient experiences, and medical training – in order to move away from diagnosis? And I’m interested to hear Annemarie’s ideas about this.
Further, it was fascinating to me that various different ailments were collected in the same history and contemporary analysis of uncertainty in the paper. How does the discourse surrounding uncertainty change if the symptoms in question vary? And does this impact the argument in any way?
Finally, I’m interested in what you think the consequences of your findings are – not only for physicians and medicine – but for patients? This last question is again intended to think about the applications of this analysis in the here and now. Specifically, in the context of ongoing uncertainties surrounding COVID-19 symptoms, and inadequate testing in the US, black and indigenous people of color are dying at much higher rates than others. Here, uncertainty isn’t just a practice of “not knowing,” but is steeped in histories of systemic racism within and beyond medicine. How would thinking about uncertainty in this context shape the argument you make here? I’m really excited to hear your thoughts.
Before I turn it back to each of the authors, I want to reiterate how wonderful it was to read and think with these papers. Each touches on critically important areas of the sociology of science, knowledge, and technology, and pushes our field forward in important ways. I look forward to hearing the author’s responses to the questions I’ve posed, as well as what they may have gained from the other papers in the panel as well. Thank you!
Session Organizer/Presider: Janet Vertesi
Session Discussant: Christina Dunbar-Hester
Navigating Change: How Venture Capital Structures Experiences of Work in a High-Tech Startup
Corporate Logics of Silicon Valley and the Institutionalization of Ethics
Jacob Metcalf and Emanuel Moss
Hacking for ‘Social Good’: Moral Commitments and Charisma Machines at the MIT Media Lab
Morgan G. Ames
Mediating Solidarities: Women of Color Feminist Networking in Technological Landscapes
University of Southern California
In 2020, we are seeing increased attention to the tech industry, especially so-called Big Tech, as one aspect of the moment of political failure we are in, including problems with monopolistic concentration of market power, racist surveillance and carceral infrastructures, and the delamination of scientific and political information from source. I’m not claiming tech is a singular causal feature, but certainly it is in a supporting role. And there is a question of who even understands this industry, or these industries, plural, because we are really talking about many industries including consumer and back-end software and hardware, materials from rare earth minerals to fiber-optic cables, and applications like streaming entertainment, e-commerce, gig economy platforms, social networking platforms, etc. It is in this context—who even understands this industry?—that I really appreciated these terrifically rich papers.
As Janet mentioned, I have a new book out, which focuses on people sited in Global North voluntaristic communities that are adjacent to and even interlocking with tech, and they would fan out and be in contact with actors in every one of your cases. In the book I explore how they are offering analysis and critique of how they are implicated in the web of relations that constitutes these tech industries. I argue there that the critiques emanating from people adjacent to the industry are often excellent and valid, but sometimes incomplete in terms of analysis of power relations.
And to think more about this, I suggest we zero in on one word in the title of this panel, Cultures of Tech: Living and Working in Silicon Valley+. Actually it’s a symbol, which is the plus sign. To get the most analytical purchase here, we should be asking questions like, What are the boundaries of Silicon Valley? Who’s in it? Where is it? Who’s responsible for it? These papers prompt us to think about this in different ways.
If we read Kuo’s and Ames’ papers together, of course it is worth delving into the charisma that gets attached to these machines, but we also cannot really separate the machines’ charisma from the bearers of the machines. Or, more specifically, we cannot separate charismatic machines’ bearers from the social categories to which these bearers are assigned. So I want to ask us to consider the relationship between charisma machines and charismatic types of bodies.
This becomes even more clear when we consider Kuo’s and Shestakofsky’s sites together, as they are uncovering some actors who aren’t sited in the hegemonic center of Silicon Valley. As we know, some groups are invisibilized. And this gives license to reproduce certain sets of power relations, often through racialized labor. I’m thinking about Lisa Nakamura’s paper on how the semiconductor industry participated in what she calls insourcing, which preceded outsourcing, in siting electronics manufacturing in the American Southwest on a Diné (Navajo) reservation before offshoring in Asia. Shestakofsky shows insourced and outsourced labor simultaneously, and effects of organizational change on those workers.
Moss and Metcalf contribute an exploration of the heterogeneity of “ethics work” in Silicon Valley firms. They write of a poignant difficulty “ethics owners” face:
“A final tension is between the responsibility of ethics owners to limit downside risks from a product causing harm and the ability of ethics owners to influence product designs in ways that generate positive benefits that do not directly translate into profit or market value for the companies.”
Question to the authors: is ethics owners your term, or a Silicon Valley term? I got the impression it is yours, and I would ask, what are implications for using “ownership” here? I wonder if this description somewhat reifies the phenomenon. Ethics is not only not necessarily owned like property, or residing somewhere fixed, but it also refers to practice and the renewal of commitments and relations, and thus lives between groups and inside of power structures. What would be gained by thinking about ethics stewards, ethics mediators, etc.? I also thought of a more ambivalent label, ethics brokering.
I also wonder about the boundaries that are drawn around ethical concerns here, which is something I have theorized as the “border of care.” It seems that a border of care here could go significantly wider than “products causing harm,” and you indicate that ethics owners are aware of irreconcilable contradictions in what they are tasked with. Ethics often seems to be constructed to mark certain structural problems as out of bounds, including racialized labor practices in the companies and the industries that support their companies, such as their supply chains, and post-use, which no one on this panel has mentioned.
This question about bordering that I used Moss and Metcalf’s paper to raise can be directed towards all these papers, in that we should be asking what is at stake in locating responsibility where it is currently located—both for actors and as analysts? And I should add, responsibility for what? For company cultures? For products’ effects? For philanthropists’ effects? For effects of whole industries? And where do we need to go to answer this? Again, Shestakofsky, Ames, and Kuo show the benefit of including peripheries to think about chains of connection, and Kuo has incorporated actors in women of color solidarity networks who provide more bottom-up perspectives for these questions.
In closing, my question for everyone is, how does your work contribute to thinking about what Virginia Eubanks has called a high-tech equity agenda? She was critiquing digital divide discourse, and Ames’ and Kuo’s sites show the imprint of that discourse. These papers all show the value in building out sophisticated and historically informed equity agendas in many directions. But we need to keep running with the “plus,” to build a truly global, if not universalizing toolkit for thinking about “tech” and tech cultures, and not only what they generate, but how what they generate can be remediated, refused, and/or repaired.
Dunbar-Hester, Christina. Hacking Diversity: The Politics of Inclusion in Open Technology Cultures. Princeton, NJ: Princeton University Press, 2020.
Eubanks, Virginia. Digital Dead End. Cambridge, MA: MIT Press, 2012.
Nakamura, Lisa. “Indigenous Circuits: Navajo Women and the Racialization of Early Electronic Manufacture.” American Quarterly 66 no. 4 (2014): 919–41.
Available Online Through September 30th
Session Organizers: Laurel Smith-Doerr & Deborah Carr
Session Presider: Ruha Benjamin
Techno-Politics and the Uneven Valuation of Life
Politics of Medical Knowledge
The Paradox of Infectious Disease
Theories of Knowledge about Racism and COVID-19
Social Networks and COVID-19
Death and Dying in the COVID-19 Era
The flash panel on COVID-19 was conceived as the country locked down in March, when we still hoped to meet in-person in San Francisco for the ASA annual meeting. Now nearly six months into the global pandemic, the U.S. tops the world in cases and per capita deaths. The need to bring critical sociological perspective to the pandemic was abundantly clear as fundamental questions about expertise, medical knowledge production, racialized data and uneven vulnerability, social networks and social isolation have infiltrated major public policy decisions (or lack thereof….) and our daily dilemmas of masking, distancing, remote work and essential work and childcare.
The virtual event on attracted an audience of roughly 300 attendees. A special thank you to our panelists: Ruha Benjamin (presider), Claire Decoteau, Steven Epstein, Joseph Harris, Anthony Ryan Hatch, Bernice Pescosolido, and Stefan Timmermans. The symposium was co-organized by Deborah Carr and Laurel Smith-Doerr, on behalf of the Medical Sociology and Science, Knowledge, and Technology (SKAT) sections, respectively.
Decoteau shared a rapid response qualitative interview based study her team has deployed in Chicago to understand how disadvantaged residents and communities of color are experiences the pandemics’ invisible mechanisms of inequity and the cumulative effects of structural inequalities. She showed how state and city officials hesitant acknowledgements of racial health disparities long history served as a cover story for the inadequacy of pandemic responses. If generations of history couldn’t be quickly “fixed” or “erased”, why should crisis managers be responsible for addressing inequities?
Epstein highlighted three core issues that warrant sociological attention in the pandemic, including the crisis of expertise, randomized controlled trials and large scale socio-technical experiment, and biocitizenship and bio-divides. Epstein warned that the strategic uncertainty and conspiracy orchestrated from above can spark a reactionary appeal to “put the genie back in the bottle” of deference to experts. However, this crisis instead demands that sociologists and others demand more thorough and thoughtful responses to questions about how we might live in a more participatory regime of knowledge production. What institutions, processes and ethos do we need to address the politics of knowledge and sufficiently account for the ways our epistemic investments shore-up or up-end relations or privilege and disadvantage?
Harris presented his team’s analysis of how infectious disease and diseases of the global south have figured into the sociological imaginary of medical sociologists in the elite spaces of ASA. Through an analysis of the Journal of Health and Social Behavior, he showed that while medical sociology is uniquely situated to help us contextualize the pandemic, infectious disease is paradoxically one of the most understudied areas of the field.
Hatch shared his heavy struggles with pessimism about possibilities for health justice and racial justice in corona time. His reminded us of the Troy Dusters’ 2005 presidential address at ASA arguing for attention to the architecture of racialized data within and beyond sociology, and pushed us to re-think the political value of racial disparities data through the lens of Afro-pessimism. What power dynamics are racialized COVID-19 data enabling in practice? When and how is the medical archive helping black people and black communities? Pointing us to the harms racial data have created – especially the scaling back of response plans in light of the COVID-19 numbers among agricultural workers and prisoners, Hatch ask how sociologists might push past the liberal fantasy of speaking truth to power through data. The accumulated reams of epidemiological data may seem necessary, but fall woefully insufficient for saving black people’s lives in an ongoing necropolitical war, he warned.
Pescosolido presented emerging data from her team’s work out of Indiana, showing the ways that the strong sociological traditions of studying social networks and social support in times of disaster have brought important insights on the enduring importance of social connections in regimes of physical distancing. Her teams worked to keep field interviewers employed in the financial fallout of the pandemic, and pivoted to a phone interviews about how social networks were activated. Their findings suggest the need to re-think the activation of networks, as many people described as activated links or helpers in the pandemic, weren’t originally in people’s pre-existing social support networks. How do structures of social networks get shifted in disasters such as hurricanes and pandemics?
Timmermans explored the ways that death and dying are being socially re-made in the pandemic. Strategies for counting the dead, rituals around death and even the sense of mortality and feelings of death or sense of disposability have each been transformed by the pandemic. Timmermans asked us to interrogate the social patterning of deaths, and called for us to look for the ways the changes we’re observing will fade away with the pandemic, or may result in more enduring societal shifts.
The panel closed with a discussion and Q & A moderated by Ruha Benjamin, who drew our collective attention to the dynamics of what Crawford-Roberts et al called structural gas lighting, This pernicious form of gas lighting allows underlying structural conditions and political economic vulnerabilities to stand as their “own cover-up” for police violence and COVID-19 infection alike. Further, adding to Hatch’s analysis of the racist consequences of racialized COVID-19 data, Benjamin asked us how sociologists ourselves are implicated in the consequences of calls for more and more data. Do these calls for more or more precise data become their own delay in calls for justice? When and how are racialized data being weaponized? And how are social scientists ourselves embattled in an era of conspiracy theories and suspicion of expertise orchestrated from above? The panelists reminded us that as medical sociologists and SKAT scholars we were already well aware of the ways that illness has changed our societies, institutions and organizations. Our challenge now may be to adjust our professional practice, methods and pedagogy in ways that adequately, if incompletely, live up to the social, ethical and epistemic crises of what Hatch called corona times.
The full video will be available online until September 30.