Categorical Misalignment: Making Autism(s) in Big Data Biobanking
Forthcoming, Social Studies of Science
This study examines how databases mediate our understanding of the relationship between behavior and biology, taking up Autism Spectrum Disorder (ASD) as a key example. I introduce a methodological approach which maps data provenance against bibliometric keywords in order to identify trends in a large corpus of research literature which relies on data from ASD biobanks. This network analysis demonstrates that data origin clearly models a rift in the research literature—not only as to how we should study ASD, but an underlying disagreement as to the thing ASD itself is as a conceptual entity. These results point to biobanks as key actors in the social construction of contested disease entities, and explores the consequences of what I term categorical misalignment: an effect produced when large data infrastructures implement divergent measurement practices for the “same” object of analysis. (Read more here)
Asserting the Public Interest in Health Data: On the Ethics of Data Governance for Biobanks and Insurers.
Forthcoming, Big Data & Society
Recent reporting revealed that the UK Biobank has been sharing data with insurtech firms for the development of actuarial AI—projects that the Biobank promises are “in the public interest.” Contesting that claim, this essay explores how insurers seek to realize value from population data via practices of profiling and sorting. We argue that these practices—particularly as intensified through big data machine learning approaches—have the potential to increase inequality in health and decrease access to insurance. In doing so, we make a case for the insufficiency of de-identification to protect health data donors, and suggest an expanded public consultation practice whenever biobanks seek to go into business with insurers. (Read more here)
Contested Care: COVID Surveillance and Health Data in the Workplace
Published in Surveillance & Society, 2023
Based on a year of ethnographic research and interviewing, this article examines how a large academic institution sought to manage new mobilities of health data during the acute crisis of COVID shutdowns and initial re-openings. While Surveillance Studies has long sought to understand how surveillant technologies are used across a “spectrum” of dynamics that range from care to control, we trouble care itself as a non-innocent category: care is not always desired, and indeed, can be a vehicle for harm. Exploring technologies ranging from contact tracing phone applications to vaccine databases, we find that care serves to refigure preexisting relationships and torque institutional roles. We also argue for a more rigorous accounting of the role that “privacy” plays, and find that individualistic and rights-based approaches to privacy lack explanatory power in community settings. (Read more here)
Data Plantation: Northern Virginia and the Territorialization of Digital Civilization in ‘The Internet Capital of the World’
Published in Online Media & Global Communication, 2023
From its early history as an ARPANET access point to the current boom in data center construction that has led the region to be called “the heart of the cloud,” Northern Virginia (NoVa) has long been an important site in the infrastructural development of digital connectivity in the US. Here, we read that story against another account of the NoVa landscape: one which takes up the violent racial and agricultural histories that prepared the soil for more recent “data plantations.” We examine the conditions under which contemporary data centers are being built alongside projects to preserve sites of Black life and history, and argue that this jarring juxtaposition is not incidental, but instead iterates longer disputes over land and meaning in the ongoing disaster of plantation capitalism. (Read more here)
Affective Economies in Blood Banks and Biobanks: Vital Accounting from US Transfusion Medicine to Genetic Research, 1935-1990
Published in Social History of Medicine, 2022
The “bank” metaphor in blood- and biobanking is not incidental: like their financial namesakes, these organizations facilitate the circulation of tissues in ways which materialize implicit imaginations of their value. Here, comparing valuation practices in midcentury US blood- and biobanking, I show how economic rhetoric works to biologize ideas about race and class by assigning value to biomaterials. This account demonstrates how, even in the absence of accepted scientific reasoning about race biology, emotive orientations to human difference come to structure inequitable and even dangerous assumptions about donors, patients and research subjects in biomedical economies. (Read more here)