Big data, small kids: Medico-scientific, familial and advocacy visions of human brains
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On the basis of anthropological fieldwork in a US pediatric neuroscience laboratory, this article traces the recent move from studies of individual diagnostic pathologies like ADHD, Tourette or autism spectrum disorder to the rapid creation of innovative interdisciplinary research coalitions and collaborations that both produce and utilize big data techniques in order to map the human connectome. By analogy with the human genome, connectome studies require new ways to imagine and image complex and multivalent neuro-circuits in which brain scans of those with and without diagnoses provide data points, open to recombination with other forms of data. Emergent expert understandings of the connectome are only minimally related to what families who enroll their diagnosed children in fMRI studies understand. Likewise, young adult self-advocates with the same diagnoses on which the neuroscientists are now working use ‘brain talk’ to stake their own ethical claims. I argue that this epistemological gap among medico-scientific, familial and advocacy visions of human brains provides a mobile space of creativity as well as misunderstanding.
Keywordsbig data neuroscience childhood disability medical anthropology connectome
Portions of this study were funded by a collaborative research grant on “cultural innovation in learning disabilities” from the Spencer Foundation; by a seed grant from NYU’s Institute for the Study of Human Development and Social Change (both with Faye Ginsburg); and by a John Simon Guggenheim Fellowship. Thanks are due to members of the lab described in this essay for their hospitality and willingness to answer the author’s continual questions, and to the many families and self-advocates interviewed. Several lab members responded with thoughtful and enthusiastic questions and suggestions when the author presented the penultimate version of this article at their journal club. Additionally, the author is as always deeply grateful to Faye Ginsburg for their longstanding and shared research and writing partnership. Questions and suggestions made by three anonymous reviewers for BioSocieties greatly improved this article.
The material included in this essay is wholly original with the exception of 509 words that are ethnographic quotations of parents’ responses to brain scanning of their children. These are lightly revised from a prior chapter, “A Child Surrounds This Brain: the Future of Neurological Difference According to Scientists, Parents, and Diagnosed Young Adults” in Martyn Pickersgill & Ira Vankeulen eds., 2011. Sociological Reflections on the Neurosciences. London: Emerald: 3–26.
This study was approved by the Institutional Review Board of New York University, beginning in 2007 with various renewals.
I have no competing intellectual or financial interests.
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