Re-thinking digital health: data, appisation and the (im)possibility of 'opting out'

Adi Kuntsman, Esperanza Miyake, Sam Martin

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Abstract

Presented as providing cost-, time- and labour- effective tools for the (self)management of health, health apps are often celebrated as beneficial to all. However, their negative effects – commodification of user data and infringement on privacy – are rarely addressed. This article focuses on one particularly troubling aspect: the difficulty of opting out of data sharing and aggregation during app use or after unsubscribing/uninstalling the app. Working in the context of the new European General Data Protection Regulation and its implementation in the UK health services, our analysis reveals the discrepancy between the information presented to users, and the apps’ actual handling of user data. We also point to the fundamental tension in the digitisation of health, between the neoliberal model where both health and data concerns are viewed as an individual’s responsibility, and the digital-capitalist model, which puts forward, and capitalises on, collective (‘Big’) data. Pulled between the ‘biopolitics of the self’ and the ‘biopolitics of the population’ (concepts coined by Btihaj Ajana), opting out of health datafication therefore cannot be resolved as a matter of individual right alone. The article offers two contributions. Methodologically, we present a toolkit for a multi-level assessment of apps from the perspective of opting out, which can be adapted and used in future research. Conceptually, the article brings together critical digital health scholarship with the perspective of data justice, offering a new approach to health apps, which focuses on opt-out as a legal, social and technical possibility, and as a collective citizen and user right.
Original languageEnglish
Number of pages16
JournalDigital Health
Volume5
Early online date9 Oct 2019
DOIs
Publication statusE-pub ahead of print - 9 Oct 2019

Keywords

  • health apps
  • datafication
  • data justice
  • GDPR
  • trust
  • opting out
  • data sharing
  • privacy
  • surveillance capitalism
  • biopolitics

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