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Data activism, promoting new forms of civic and political engagement, has emerged as a response to problematic aspects of datafication that include tensions between data openness and data ownership, and asymmetries in terms of data usage and distribution. In this article, we discuss MyData, a data activism initiative originating in Finland, which aims to shape a more sustainable citizen-centric data economy by means of increasing individuals' control of their personal data. Using data gathered during long-term participant-observation in collaborative projects with (...) No categories |
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This article approaches the paradigm shift of datafication from the perspective of civil society. Looking at how individuals and groups engage with datafication, it complements the notion of “data politics” by exploring what we call the “contentious politics of data”. By contentious politics of data we indicate the bottom-up, transformative initiatives interfering with and/or hijacking dominant processes of datafication, contesting existing power relations or re-appropriating data practices and infrastructure for purposes distinct from the intended. Said contentious politics of data is (...) No categories |
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This study identifies and explores evolving concepts of trust and privacy in the context of user-generated health data. We define “user-generated health data” as data captured through devices or software and used outside of traditional clinical settings for tracking personal health data. The investigators conducted qualitative research through semistructured interviews with researchers, health technology start-up companies, and members of the general public to inquire why and how they interact with and understand the value of user-generated health data. We found significant (...) No categories |