Action Stations: Biological Cosmopolitanism at Play on Online Support Groups for Genetic Disorders

Pauline Herbst

Abstract


This paper examines how 19 parents of children diagnosed with the inherited metabolic disorder medium-chain acyl coa dehydrogenase deficiency (MCADD) express their lived experience of the disorder on a closed New Zealand/Australia Facebook group. It shows how the diagnosis creates new geneticised subjects of both the child and the parents who care for her and that this diagnosis ties these families to the nation-state. Their online identity, tied to the care of their asymptomatically, ‘dis’ordered child, exists simultaneously with that of other identities linked to the ‘well’ child. As cosmopolitan subjects they move in and out of the socio-cultural environment constructed by the place in which they live and the health system linked to it, to engage with and in doing so, create, an entirely new group based around a shared condition. I suggest biological cosmopolitanism as an overarching framework to discuss how these parents of children caught in limbo between pathology and health, engage in a voluntary and mutually hospitable set of relationships on online support groups, characterised by mobility, openness and liberty.

Keywords


Genetic disorder, medical anthropology, online community, biological cosmopolitanism, newborn screening

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DOI: http://dx.doi.org/10.11157/sites-vol13iss1id306