Digital data help data scientists and epidemiologists track and predict outbreaks of disease. Mobile phone GPS data, social media data, or other forms of information updates such as the progress of epidemics are used by epidemiologists to recognize disease spread among specific groups of people. Targeting groups as potential carriers of a disease, rather than addressing individuals as patients, risks causing harm to groups. While there are rules and obligations at the level of the individual, we have to reach a (...) stage in the development of data analytics where groups are protected as entities. This chapter offers a deeper examination of harms to the groups. (shrink)

New ubiquitous information and communication technologies, in particular recording-enabled smart devices and social media programs, are giving rise to a profound new power for ordinary people to monitor and track each other on a global scale. Along with this growing capacity to monitor one another is a new capacity to explicitly and publicly judge one another—to rate, rank, comment on, shame and humiliate each other through the net. Drawing upon warnings from Kierkegaard and Mill on the power of public opinion (...) to produce conformity, I argue a new apparatus of surveillance and control is being generated that threatens individual freedom through a coercion of the will by an anonymous and interconnected crowd. I conclude that we must urgently assess how to protect individuals from a social tyranny of the public enabled by these new technologies while effective measures can still be taken to mitigate their dangers. (shrink)

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)

The debate on the ethics of privacy has been mainly dominated by Western perspectives, to the exclusion of broader ethical theories and socio-cultural perspectives. This imbalance carries risks; transplanted ethical norms and values can collide with those of the communities in which they are deployed. The consequent homogenization might also represent a missed opportunity to enrich and develop the current paradigm of privacy protection so as to effectively face new technological challenges. This article introduces and discusses the sub-Saharan philosophy of (...) Ubuntu and argues how its conception of the self helps to reinterpret some of the emerging issues revolving digital information technologies. To begin with, a general overview of the debate on the ethics of privacy is provided by distinguishing between individual and relational privacy. Also, the challenges of 'group privacy' are discussed. Then, we introduce basic principles of Ubuntu focusing on how these may have affected privacy conceptions and related legal practices. By outlining opportunities and risks of intercultural information ethics, we argue how Ubuntu—similarly to other communitarian moral philosophies—strengthens the development of the concept of relational privacy and, in particular, of group privacy. (shrink)

This paper poses the question of whether people have a duty to participate in digital epidemiology. While an implied duty to participate has been argued for in relation to biomedical research in general, digital epidemiology involves processing of non-medical, granular and proprietary data types that pose different risks to participants. We first describe traditional justifications for epidemiology that imply a duty to participate for the general public, which take account of the immediacy and plausibility of threats, and the identifiability of (...) data. We then consider how these justifications translate to digital epidemiology, understood as an evolution of traditional epidemiology that includes personal and proprietary digital data alongside formal medical datasets. We consider the risks imposed by re-purposing such data for digital epidemiology and propose eight justificatory conditions that should be met in justifying a duty to participate for specific digital epidemiological studies. The conditions are then applied to three hypothetical cases involving usage of social media data for epidemiological purposes. We conclude with a list of questions to be considered in public negotiations of digital epidemiology, including the application of a duty to participate to third-party data controllers, and the important distinction between moral and legal obligations to participate in research. (shrink)

Luciano Floridi was not the first to discuss the idea of group privacy, but he was perhaps the first to discuss it in relation to the insights derived from big data analytics. He has argued that it is important to investigate the possibility that groups have rights to privacy that are not reducible to the privacy of individuals forming such groups. In this paper, we introduce a distinction between two concepts of group privacy. The first, the “what happens in Vegas (...) stays in Vegas” privacy (in the following: WHVSV privacy), deals with confidential information shared with the member of a group and inaccessible to (all or a specific group of) outsiders. The second, to which we shall refer as inferential privacy, deals with the inferences that can be made about a group of people defined by a feature, or combination thereof, shared by all individuals in the group. We show why we unreservedly agree with Floridi that groups can have a form of privacy that amounts to more than the mere fact of being sets of individuals each of whom has individual privacy; moreover, like Floridi, we find it plausible that at least some groups (those satisfying our definition of type-a groups) may have a right to a species of group privacy (that is, WHVSV privacy) as groups (and not just as individuals who belong to those groups). However, by turning our attention to the context of big data analytics, we show that the relevant, new notion of group privacy is one of inferential privacy. We argue that an absolute right (either of individuals or groups) to inferential privacy is implausible. We also show that many groups generated algorithmically (those satisfying our definition of type-b groups) cannot be right holders as groups (unless they become type-a groups). (shrink)

The concept of the digital phenotype has been used to refer to digital data prognostic or diagnostic of disease conditions. Medical conditions may be inferred from the time pattern in an insomniac’s tweets, the Facebook posts of a depressed individual, or the web searches of a hypochondriac. This paper conceptualizes digital data as an extended phenotype of humans, that is as digital information produced by humans and affecting human behavior and culture. It argues that there are ethical obligations to persons (...) affected by generalizable knowledge of a digital phenotype, not only those who are personally identifiable or involved in data generation. This claim is illustrated by considering the health-related digital phenotypes of precision medicine and digital epidemiology. (shrink)

This paper aims to provide new insights to debates on group privacy, which can be seen as part of a social turn in privacy scholarship. Research is increasingly showing that the classic individualistic understanding of privacy is insufficient to capture new problems in algorithmic and online contexts. An understanding of privacy as an “interpersonal boundary-control process” (Altman, The environment and social behavior, Brooks and Cole, Monterey, 1975) framing privacy as a social practice necessary to sustain intimate relationships is gaining ground. (...) In this debate, my research is focused on what I refer to as “self-determined groups” which can be defined as groups whose members consciously and willingly perceive themselves as being part of a communicative network. While much attention is given to new forms of algorithmically generated groups, current research on group privacy fails to account for the ways in which self-determined groups are affected by changes brought about by new information technologies. In an explorative case study on self-organized therapy groups, I show how these groups have developed their own approach to privacy protection, functioning on the basis of social practices followed by all participants. This informal approach was effective in pre-digital times, but online, privacy threats have reached a new level extending beyond the scope of a group’s influence. I therefore argue that self-determined sensitive topic groups are left facing what I present as a dilemma: a tension between the seemingly irreconcilable need for connectivity and a low threshold, on the one hand, and the need for privacy and trust, on the other. In light of this dilemma, I argue that we need new sorts of political solutions. (shrink)

This article presents a conceptual investigation into the value impacts and relations of algorithms in the domain of justice and security. As a conceptual investigation, it represents one step in a value sensitive design based methodology. Here, we explicate and analyse the expression of values of accuracy, privacy, fairness and equality, property and ownership, and accountability and transparency in this context. We find that values are sensitive to disvalue if algorithms are designed, implemented or deployed inappropriately or without sufficient consideration (...) for their value impacts, potentially resulting in problems including discrimination and constrained autonomy. Furthermore, we outline a framework of conceptual relations of values indicated by our analysis, and potential value tensions in their implementation and deployment with a view towards supporting future research, and supporting the value sensitive design of algorithms in justice and security. (shrink)