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Taking care: Anticipation, extraction and the politics of temporality in autism science

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Abstract

Research on autism has increased significantly over the past several decades. This upsurge parallels the steep rise in autism diagnoses. Together, these conditions have increased the number of people occupying the social role of research participants, including investigators, analysts and subjects. Simultaneously, addressing scientific questions about autism now involves new research efforts including prospective enriched-risk cohort studies exploring the environmental and genetic causes of autism during pregnancy and early child development. Rather than one-time donations, these studies require extended commitments on the part of all those involved in the research. This article draws on ethnographic observations of research practices and interviews with investigators, study staff and participants to examine the emergent relationships between research and care in this area of autism science. I introduce the notion of ‘taking care’ to describe the forms of anticipatory labor and mutual extraction involved in longitudinal research. Through tracing three modes of taking care across practices of study design, data collection and participation, I argue that research and care become intimately intertwined and mutually constructed during the research process. These findings reflect how processes of taking and giving are constitutive of research participation for all those engaged in the research enterprise. This article considers the relationships between these practices and new forms of community and sociality related to biomedical science.

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Notes

  1. The majority of social science and bioethics scholarship concerning the therapeutic misconception focuses on clinical trials. The case presented here provides a window onto how research and care are situated in the context of prospective epidemiological research. This is a different study design than a clinical trial. While I describe this in more detail below, several distinctions warrant noting here. First, unlike clinical trials, there are no treatment and control groups in the studies I discuss. Second, the children of interest in the study, who (along with their mothers) provide the majority of data collected, do not currently have autism. Rather, they are considered “high-risk” because they have a biological sibling with autism. Finally, there is no treatment being researched in these settings. These are observational studies, which may provide referrals for clinical evaluation or services should a child of interest exhibit developmental delays or signs of autism. Most children of interest will not be diagnosed with autism (see Constantino et al, 2010; Ozonoff et al, 2011).

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Acknowledgements

I would like to thank Hannah Landecker, Adele Clarke, Janet Shim, Chloe Silverman, Carrie Friese, Gil Eyal, Daniel Navon, Des Fitzgerald, Brendan Hart, Sarah Richardson and anonymous reviewers who helped me think about and articulate the arguments in this article during various stages of its development. I owe special thanks to my research participants who opened their lives, homes and scientific practices to me. I would also like to thank the UCLA Institute for Society and Genetics, the UCSF Department of Social and Behavioral Sciences, and the UC Toxic Substances Research and Teaching Fellowship for their financial support of this research.

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    Martine D Lappé

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Lappé, M. Taking care: Anticipation, extraction and the politics of temporality in autism science. BioSocieties 9, 304–328 (2014). https://doi.org/10.1057/biosoc.2014.14

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