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 (...) data activists, we explore the internal tensions of data activism by first outlining two different social imaginaries – technological and socio-critical – within MyData, and then merging them to open practical and analytical space for engaging with the socio-technical futures currently in the making. While the technological imaginary favours data infrastructures as corrective measures, the socio-critical imaginary questions the effectiveness of technological correction. Unpacking them clarifies the kinds of political and social alternatives that different social imaginaries ascribe to the notions underlying data activism, and highlights the need to consider the social structures in play. The more far-reaching goal of our exercise is to provide practical and analytical resources for critical engagement in the context of data activism. By merging technological and socio-critical imaginaries in the work of reimagining governing structures and knowledge practices alongside infrastructural arrangements, scholars can depart from the most obvious forms of critique, influence data activism practice, and formulate data ethics and data futures. (shrink)

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 (...) articulated in an array of practices of data activism taking a critical stance towards datafication. In data activism, data as mediators take a central role, both as part of an action repertoire or as objects of struggle in their own right. Leveraging social movement studies and science and technology studies, this theoretical essay argues that data activism can be mapped along two analytical dimensions: “data as stakes” vs. “data as repertoires”, and “individual practice vs. collective action”. Mapping action repertoires and tactics along these axes allows us to chart the potential emergence of a political data subject at the intersection of these two dimensions. This furthers our understanding of people’s engagement with data in relation to other forms of activism and existing work in social movement studies. It also helps us interpreting potential trajectories of contemporary social movements, as they increasingly interface with data, devices and platforms. (shrink)

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 (...) results concerning new attitudes toward trust, privacy, and sharing of health data outside of clinical settings that conflict with regulations governing health data within clinical settings. Members of the general public expressed little concern about sharing health data with the companies that sold the devices or apps they used, and indicated that they rarely read the “terms and conditions” detailing how their data may be exploited by the company or third-party affiliates before consenting to them. In contrast, interviews with researchers revealed significant resistance among potential research participants to sharing their user-generated health data for purposes of scientific study. The widespread rhetoric of personalization and social sharing in “user-generated culture” appears to facilitate an understanding of user-generated health data that deemphasizes the risk of exploitation in favor of loosely defined benefits to individual and social well-being. We recommend clarification and greater transparency of regulations governing data sharing related to health. (shrink)