This paper builds off the Our Data Ourselves research project, which examined ways of understanding and reclaiming the data that young people produce on smartphone devices. Here we explore the growing usage and centrality of mobiles in the lives of young people, questioning what data-making possibilities exist if users can either uncover and/or capture what data controllers such as Facebook monetize and share about themselves with third-parties. We outline the MobileMiner, an app we created to consider how gaining access to (...) one’s own data not only augments the agency of the individual but of the collective user. Finally, we discuss the data making that transpired during our hackathon. Such interventions in the enclosed processes of datafication are meant as a preliminary investigation into the possibilities that arise when young people are given back the data which they are normally structurally precluded from accessing. (shrink)

This introduction to the special issue on data and agency argues that datafication should not only be understood as the process of collecting and analysing data about Internet users, but also as feeding such data back to users, enabling them to orient themselves in the world. It is important that debates about data power recognise that data is also generated, collected and analysed by alternative actors, enhancing rather than undermining the agency of the public. Developing this argument, we first make (...) clear why and how the question of agency should be central to our engagement with data. Subsequently, we discuss how this question has been operationalized in the five contributions to this special issue, which empirically open up the study of alternative forms of datafication. Building on these contributions, we conclude that as data acquire new power, it is vital to explore the space for citizen agency in relation to data structures and to examine the practices of data work, as well as the people involved in these practices. (shrink)

In this chapter I identify three problems affecting the plausibility of group privacy and argue in favour of their resolution. The first problem concerns the nature of the groups in question. I shall argue that groups are neither discovered nor invented, but designed by the level of abstraction (LoA) at which a specific analysis of a social system is developed. Their design is therefore justified insofar as the purpose, guiding the choice of the LoA, is justified. This should remove the (...) objection that groups cannot have a right to privacy because groups are mere artefacts (there are no groups, only individuals) or that, even if there are groups, it is too difficult to deal with them. The second problem concerns the possibility of attributing rights to groups. I shall argue that the same logic of attribution of a right to individuals may be used to attribute a right to a group, provided one modifies the LoA and now treats the whole group itself as an individual. This should remove the objection that, even if groups exist and are manageable, they cannot be treated as holders of rights. The third problem concerns the possibility of attributing a right to privacy to groups. I shall argue that sometimes it is the group and only the group, not its members, that is correctly identified as the correct holder of a right to privacy. This should remove the objection that privacy, as a group right, is a right held not by a group as a group but rather by the group’s members severally. The solutions of the three problems supports the thesis that an interpretation of privacy in terms of a protection of the information that constitutes an individual—both in terms of a single person and in terms of a group—is better suited than other interpretations to make sense of group privacy. (shrink)

The goal of the book is to present the latest research on the new challenges of data technologies. It will offer an overview of the social, ethical and legal problems posed by group profiling, big data and predictive analysis and of the different approaches and methods that can be used to address them. In doing so, it will help the reader to gain a better grasp of the ethical and legal conundrums posed by group profiling. The volume first maps the (...) current and emerging uses of new data technologies and clarifies the promises and dangers of group profiling in real life situations. It then balances this with an analysis of how far the current legal paradigm grants group rights to privacy and data protection, and discusses possible routes to addressing these problems. Finally, an afterword gathers the conclusions reached by the different authors and discuss future perspectives on regulating new data technologies. (shrink)

This article provides a history of private sector tracking technologies, examining how the advent of commercial surveillance centered around a logic of data capitalism. Data capitalism is a system in which the commoditization of our data enables an asymmetric redistribution of power that is weighted toward the actors who have access and the capability to make sense of information. It is enacted through capitalism and justified by the association of networked technologies with the political and social benefits of online community, (...) drawing upon narratives that foreground the social and political benefits of networked technologies. I examine its origins in the wake of the dotcom bubble, when technology makers sought to develop a new business model to support online commerce. By leveraging user data for advertising purposes, they contributed to an information environment in which every action leaves behind traces collected by companies for commercial purposes. Through analysis of primary source materials produced by technology makers, journalists, and business analysts, I examine the emergence of data capitalism between the mid-1990s and mid-2000s and its central role in the contemporary information economy. (shrink)

In times of global economic and political crises, the notion of solidarity is gaining new currency. This book argues that a solidarity-based perspective can help us to find new ways to address pressing problems. Exemplified by three case studies from the field of biomedicine: databases for health and disease research, personalised healthcare, and organ donation, it explores how solidarity can make a difference in how we frame problems, and in the policy solutions that we can offer.

Self-tracking devices point to a future in which individuals will be more involved in the management of their health and will generate data that will benefit clinical decision making and research. They have thus attracted enthusiasm from medical and public health professionals as key players in the move toward participatory and personalized healthcare. Critics, however, have begun to articulate a number of broader societal and ethical concerns regarding self-tracking, foregrounding their disciplining, and disempowering effects. This paper has two aims: first, (...) to analyze some of the key promises and concerns that inform this polarized debate. I argue that far from being solely about health outcomes, this debate is very much about fundamental values that are at stake in the move toward personalized healthcare, namely, the values of autonomy, solidarity, and authenticity. The second aim is to provide a framework within which an alternative approach to self-tracking for health can be developed. I suggest that a practice-based approach, which studies how values are enacted in specific practices, can open the way for a new set of theoretical questions. In the last part of the paper, I sketch out how this can work by describing various enactments of autonomy, solidarity, and authenticity among self-trackers in the Quantified Self community. These examples show that shifting attention to practices can render visible alternative and sometimes unexpected enactments of values. Insofar as these may challenge both the promises and concerns in the debate on self-tracking for health, they can lay the groundwork for new conceptual interventions in future research. (shrink)

Techno-Anthropology recognizes the intertwining of technology with aims, needs, practices, and skills; ‘the techno’ and ‘the anthro’ are not only interconnected, but historically co-constituted. In this paper developments in ‘personal analytics’ are examined with the aim of proposing epistemological and methodological directions for Techno-Anthropological exploration. Personal analytics refers to the field of interactions that surrounds tracking various bodily and mental functions, including the analysis, visualization, and distribution of the data, thereby encompassing people’s involvements with measuring devices and data movements. By (...) discussing findings from a self-tracking study that focused on heart-rate variability measurement, the article opens for scrutiny ways in which personal data can translate people’s selves into a format that is engaging and actionable. This, in turn, enables researchers to witness and critically assess a terrain where bodily and mental capacities, and life itself, are not taken as given, but become part of the processes of everyday sense-making and contestation. (shrink)

The truth of the matter is that our deficiency does not lie in the want of well-verified "facts." What we lack is our bearings. The contemporary experience of things technological has repeatedly confounded our vision, our expectations, and our capacity to make intelligent judgments. Categories, arguments, conclusions, and choices that would have been entirely obvious in earlier times are obvious no longer. Patterns of perceptive thinking that were entirely reliable in the past now lead us systematically astray. Many of our (...) standard conceptions of technology reveal a disorientation that borders on dissociation from reality. And as long as we lack the ability to make our situation intelligible, all of the "data" in the world will make no difference.;From the Introduction. (shrink)

This article investigates the claims and complexities involved in the platform-based economics of health and fitness apps. We examine a double-edged logic inscribed in these platforms, promising to offer personal solutions to medical problems while also contributing to the public good. On the one hand, online platforms serve as personalized data-driven services to their customers. On the other hand, they allegedly serve public interests, such as medical research or health education. In doing so, many apps employ a diffuse discourse, hinging (...) on terms like “sharing,” “open,” and “reuse” when they talk about data extraction and distribution. The analytical approach we adopt in this article is situated at the nexus of science and technology studies, political economy, and the sociology of health and illness. The analysis concentrates on two aspects: datafication and commodification. We apply these analytical categories to three specific platforms: 23andMe, PatientsLikeMe, and Parkinson mPower. The last section will connect these individual examples to the wider implications of health apps’ data flows, governance policies, and business models. Regulatory bodies commonly focus on the safety and security of apps, but pay scarce attention to health apps’ techno-economic governance. Who owns user-generated health data and who gets to benefit? We argue that it is important to reflect on the societal implications of health data markets. Governments have the duty to provide conceptual clarity in the grand narrative of transforming health care and health research. (shrink)

'Most of us are still groping for answers about what makes life worth living, or what confers meaning on individual lives', writes Charles Taylor in Sources of the Self. 'This is an essentially modern predicament.' Charles Taylor's latest book sets out to define the modern identity by tracing its genesis, analysing the writings of such thinkers as Augustine, Descartes, Montaigne, Luther, and many others. This then serves as a starting point for a renewed understanding of modernity. Taylor argues that modern (...) subjectivity has its roots in ideas of human good, and is in fact the result of our long efforts to define and attain the good. The modern turn inwards is far from being a disastrous rejection of rationality, as its critics contend, but has at its heart what Taylor calls the affirmation of ordinary life. He concludes that the modern identity, and its attendant rejection of an objective order of reason, is far richer in moral sources that its detractors allow. Sources of the Self provides a decisive defence of the modern order and a sharp rebuff to its critics. (shrink)

"Charles Taylor presents a fundamental challenge to neoliberal apologists for the new world order--but not only to them.

In this paper I argue that there is an urgent need for more empirical research into everyday experiences of living with datafication, something that has not been prioritised in the emerging field of data studies to date. As a result of this absence, the knowledge produced within data studies is not as aligned to the aims of data activism as it might be. Data activism seeks to challenge existing, unequal data power relations and to mobilise data in order to enhance (...) social justice, yet data studies has focused primarily on identifying the former and not on imagining the latter. To build a picture of what more just conditions of datafication might look like, I argue that it is important to take account of everyday experiences of datafication, of what people themselves say would enable them to live better with data and would constitute more just data arrangements, based on their experiences. I explore two possible approaches to this endeavour, both of which suggest the need for a vocabulary of emotions in researching everyday living with data. (shrink)

This article shows how activists in the open data movement re-articulate notions of democracy, participation, and journalism by applying practices and values from open source culture to the creation and use of data. Focusing on the Open Knowledge Foundation Germany and drawing from a combination of interviews and content analysis, it argues that this process leads activists to develop new rationalities around datafication that can support the agency of datafied publics. Three modulations of open source are identified: First, by regarding (...) data as a prerequisite for generating knowledge, activists transform the sharing of source code to include the sharing of raw data. Sharing raw data should break the interpretative monopoly of governments and would allow people to make their own interpretation of data about public issues. Second, activists connect this idea to an open and flexible form of representative democracy by applying the open source model of participation to political participation. Third, activists acknowledge that intermediaries are necessary to make raw data accessible to the public. This leads them to an interest in transforming journalism to become an intermediary in this sense. At the same time, they try to act as intermediaries themselves and develop civic technologies to put their ideas into practice. The article concludes with suggesting that the practices and ideas of open data activists are relevant because they illustrate the connection between datafication and open source culture and help to understand how datafication might support the agency of publics and actors outside big government and big business. (shrink)

In privacy self-management, people are expected to perform cost–benefit analysis on the use of their personal data, and only consent when their subjective benefits outweigh the costs. However, the ubiquitous collection of personal data and Big Data analytics present increasing challenges to successful privacy management. A number of services and research initiatives have proposed similar solutions to provide people with more control over their data by consolidating consent decisions under a single interface. We have named this the ‘consent intermediary’ approach. (...) In this paper, we first identify the eight obstacles to privacy self-management which make cost–benefit analysis conceptually and practically challenging. We then analyse to which extent consent intermediaries can help overcome the obstacles. We argue that simply bringing consent decisions under one interface offers limited help, but that the potential of this approach lies in leveraging the intermediary position to provide aides for privacy management. We find that with suitable tools, some of the more practical obstacles indeed can become solvable, while others remain fundamentally insuperable within the individuated privacy self-management model. Attention should also be paid to how the consent intermediaries may take advantage of the power vested in the intermediary positions between users and other services. (shrink)