The datafication and digitalization of health and medicine has engendered a proliferation of new collaborations between public health institutions and data corporations like Google, Apple, Microsoft and Amazon. Critical perspectives on these new partnerships tend to frame them as an instance of market transgressions by tech giants into the sphere of health and medicine, in line with a “hostile worlds” doctrine that upholds that the borders between market and non-market spheres should be carefully policed. This article seeks to outline the (...) limitations of this common framing for critically understanding the phenomenon of the Googlization of health. In particular, the mobilization of a diversity of non-market value statements in the justification work carried out by actors involved in the Googlization of health indicates the co-presence of additional worlds or spheres in this context, which are not captured by the market vs. non-market dichotomy. It then advances an alternative framework, based on a multiple-sphere ontology that draws on Boltanski and Thevenot’s orders of worth and Michael Walzer’s theory of justice, which I call a normative pragmatics of justice. This framework addresses both the normative deficit in Boltanski and Thevenot’s work and provides an important emphasis on the empirical workings of justice. Finally, I discuss why this framework is better equipped to identify and to address the many risks raised by the Googlization of health and possibly other dimensions of the digitalization and datafication of society. (shrink)

The administrative reform of the datafied public administration places great emphasis on the classification, control, and prediction of citizen behavior and therefore has the potential to significantly impact citizen–state relations. There is a growing body of literature on data-oriented activism which aims to resist and counteract existing harmful data practices. However, little is known about the processes, policies, and political-economic structures that make datafication possible. There is a distinct research gap on situated and context-specific empirical research, which critically interrogates the (...) premises, interests, and agendas of data-driven public administration and how stakeholders can impact them. This paper therefore studies the conditions of participation in public administration datafication. It asks the overall research question of how citizens are problematized and included in policy and practitioner discourse in the datafication of public administration. The paper takes Norway as its case and applies Cardullo and Kitchin’s scaffold of smart citizen participation at the system level. It makes use of a unique empirical insight into the field, consisting of a survey, interviews, and an extensive document analysis. Unexpectedly, we find that citizens and civil society are rarely engaged in this administrative reform. Instead, we identify a paternalistic, top-down, technocratic approach where the context, values, and agendas of datafication are obscured from the citizen. (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)

Low levels of public trust in data practices have led to growing calls for changes to data-driven systems, and in the EU, the General Data Protection Regulation provides a legal motivation for such changes. Data management is a vital component of data-driven systems, but what constitutes ‘good’ data management is not straightforward. Academic attention is turning to the question of what ‘good data’ might look like more generally, but public views are absent from these debates. This paper addresses this gap, (...) reporting on a survey of the public on their views of data management approaches, undertaken by the authors and administered in the UK, where departure from the EU makes future data legislation uncertain. The survey found that respondents dislike the current approach in which commercial organizations control their personal data and prefer approaches that give them control over their data, that include oversight from regulatory bodies or that enable them to opt out of data gathering. Variations of data trusts – that is, structures that provide independent stewardship of data – were also preferable to the current approach, but not as widely preferred as control, oversight and opt out options. These features therefore constitute ‘good data management’ for survey respondents. These findings align only in part with principles of good data identified by policy experts and researchers. Our findings nuance understandings of good data as a concept and of good data management as a practice and point to where further research and policy action are needed. (shrink)