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

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Abstract

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.

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Notes

  1. As Boyd and Crawford (2012) write, “Big Data is less about data that is big than it is about a capacity to search, aggregate, and cross-reference large data sets … It is dependent on technology that maximizes computation power and algorithmic accuracy to gather, analyze, link, and compare large data sets … Big Data techniques identify patterns on which economic, social, technical and biomedical claims can be made”. In biomedical research, big data uses machine learning to minimize human intervention in organizing and managing large biomedical resources that it can continually update (www.nlm.nih.gov/ep/bigdata.html, accessed 8 May 2015).

  2. National figures are reported in nces.ed.gov/fastfacts/display.asp?id=64, accessed 28 February 2015; in New York City, the number of children receiving special educational services is higher, almost 17 per cent (Why the Gap? Special Education and New York City Charter Schools, www.manhattan-institute.org/html/cr_80.htm, accessed 28 February 2015).

  3. Beginning in 2008, a well-attended international biennial workshop on the resting brain has signaled the importance of this approach. The 2013 conference was keynoted by Thomas Insel, head of the US National Institute of Mental Health (NIMH), whose presence indicated its support (www.martinos.org/brainconnectivity/).

  4. Connectomics in the human brain faces many challenges of integrating scales ranging from the individual neural cell to the structural architecture of brain regions. This lab pursues a portfolio of studies, many investigating variability in macro-structures connecting long distance neural pathways across regions of the brain.

  5. Human Connectome Project (accessed August 2014), Bardin, 2012.

  6. This paradigm shift toward big data interdisciplinary collaboration intended to redefine cognitive, emotional and behavioral disorders is deeply imbricated with funding priorities. Thomas Insel, director of the US NIMH, set off an uproar in the field of psychiatry, its most obvious funding beneficiary, announcing in February 2014 that NIMH would no longer support studies uniquely focused on patient symptomology as classified in the DSM 5. NIMH now favors proposals that employ Research Domain Criteria “to be studied across multiple units of analysis, from genes to neural circuits to behaviors, cutting across disorders as traditionally defined” (Director’s Blog, 2014; Insel, 2013). This science-driven interdisciplinary mandate reclassifies complex phenotypes in search of biomarkers for psychopathology. This change in funding priorities has provoked significant social scientific scrutiny (Callard, 2014; Pickersgill, 2014; Szmukler, 2014; Wooley, 2014)

  7. Some of the variables employed in a US lab may not travel well, for example, I observed an unsuccessful attempt to use “ethnicity” as a demographic category in research questionnaires. Lab members from Argentina, China, Taiwan, India, Ireland, Italy and Spain agreed to disagree about its local meanings, highly coded in the US case.

  8. See Rapp (2012) for the original publication of these parental remarks and my interpretation of them.

  9. See Rapp (2012) for the original publication of these comments by neuroscience researchers, and my interpretation of them.

  10. TO is a lab-used abbreviation for “temper outburst”.

  11. See National Center for Advancing Translational Sciences, accessed June 2014.

  12. Examples of such ethical and political self-fashioning are richly represented in the Websites and linked resources of groups such as the Autistic Self Advocacy Network (ASAN, accessed July 2014), Eye-to-Eye for Learning disabilities (Eye-to-eye National, accessed July 2014) and Icarus (Icarus Project, accessed July 2014) (by, for and about people living with a bipolar diagnosis or otherwise confronting their own “mad gifts”).

  13. www.allkindsofminds.org/library/library/research-studies/akom-research-snapshot.pdf, accessed 9 May 2015.

  14. See footnote 10 for examples; also see Ginsburg and Rapp (2013a).

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Acknowledgements

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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    Rayna Rapp

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Rapp, R. Big data, small kids: Medico-scientific, familial and advocacy visions of human brains. BioSocieties 11, 296–316 (2016). https://doi.org/10.1057/biosoc.2015.33

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