Big data, small kids: Medico-scientific, familial and advocacy visions of human brains

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.