Introduction -- Recognition as identification -- recognizing oneself -- Mutal recognition -- Conclusion: A review.

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)

We are currently witnessing a sharp rise in the use of algorithmic decision-making tools. In these instances, a new wave of policy concerns is set forth. This article strives to map out these issues, separating the wheat from the chaff. It aims to provide policy makers and scholars with a comprehensive framework for approaching these thorny issues in their various capacities. To achieve this objective, this article focuses its attention on a general analytical framework, which will be applied to a (...) specific subset of the overall discussion. The analytical framework will reduce the discussion to two dimensions, every one of which addressing two central elements. These four factors call for a distinct discussion, which is at times absent in the existing literature. The two dimensions are the specific and novel problems the process assumedly generates and the specific attributes which exacerbate them. While the problems are articulated in a variety of ways, they most likely could be reduced to two broad categories: efficiency and fairness-based concerns. In the context of this discussion, such problems are usually linked to two salient attributes the algorithmic processes feature—its opaque and automated nature. (shrink)

The increasing availability of digital data reflecting economic and human development, and in particular the availability of data emitted as a by-product of people’s use of technological devices and services, has both political and practical implications for the way people are seen and treated by the state and by the private sector. Yet the data revolution is so far primarily a technical one: the power of data to sort, categorise and intervene has not yet been explicitly connected to a social (...) justice agenda by the agencies and authorities involved. Meanwhile, although data-driven discrimination is advancing at a similar pace to data processing technologies, awareness and mechanisms for combating it are not. This paper posits that just as an idea of justice is needed in order to establish the rule of law, an idea of data justice – fairness in the way people are made visible, represented and treated as a result of their production of digital data – is necessary to determine ethical paths through a datafying world. Bringing together the emerging scholarly perspectives on this topic, I propose three pillars as the basis of a notion of international data justice: visibility, engagement with technology and antidiscrimination. These pillars integrate positive with negative rights and freedoms, and by doing so challenge both the basis of current data protection regulations and the growing assumption that being visible through the data we emit is part of the contemporary social contract. (shrink)

This article considers the issue of opacity as a problem for socially consequential mechanisms of classification and ranking, such as spam filters, credit card fraud detection, search engines, news trends, market segmentation and advertising, insurance or loan qualification, and credit scoring. These mechanisms of classification all frequently rely on computational algorithms, and in many cases on machine learning algorithms to do this work. In this article, I draw a distinction between three forms of opacity: opacity as intentional corporate or state (...) secrecy, opacity as technical illiteracy, and an opacity that arises from the characteristics of machine learning algorithms and the scale required to apply them usefully. The analysis in this article gets inside the algorithms themselves. I cite existing literatures in computer science, known industry practices, and do some testing and manipulation of code as a form of lightweight code audit. I argue that recognizing the distinct forms of opacity that may be coming into play in a given application is a key to determining which of a variety of technical and non-technical solutions could help to prevent harm. (shrink)

This essay details the resurgence of wellness program as employed by large corporations with the aim of reducing healthcare costs. The essay narrows in on a discussion of how Big Data collection practices are being utilized in wellness programs and the potential negative impact on the worker in regards to privacy and employment discrimination. The essay offers an ethical framework to be adopted by wellness program vendors in order to conduct wellness programs that would achieve cost-saving goals without undue burdens (...) on the worker. The essay also offers some innovative approaches to wellness that may well better serve the goals of healthcare cost reduction. (shrink)

In information societies, operations, decisions and choices previously left to humans are increasingly delegated to algorithms, which may advise, if not decide, about how data should be interpreted and what actions should be taken as a result. More and more often, algorithms mediate social processes, business transactions, governmental decisions, and how we perceive, understand, and interact among ourselves and with the environment. Gaps between the design and operation of algorithms and our understanding of their ethical implications can have severe consequences (...) affecting individuals as well as groups and whole societies. This paper makes three contributions to clarify the ethical importance of algorithmic mediation. It provides a prescriptive map to organise the debate. It reviews the current discussion of ethical aspects of algorithms. And it assesses the available literature in order to identify areas requiring further work to develop the ethics of algorithms. (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.

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)

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)

We are living in an algorithmic age where mathematics and computer science are coming together in powerful new ways to influence, shape and guide our behaviour and the governance of our societies. As these algorithmic governance structures proliferate, it is vital that we ensure their effectiveness and legitimacy. That is, we need to ensure that they are an effective means for achieving a legitimate policy goal that are also procedurally fair, open and unbiased. But how can we ensure that algorithmic (...) governance structures are both? This article shares the results of a collective intelligence workshop that addressed exactly this question. The workshop brought together a multidisciplinary group of scholars to consider barriers to legitimate and effective algorithmic governance and the research methods needed to address the nature and impact of specific barriers. An interactive management workshop technique was used to harness the collective intelligence of this multidisciplinary group. This method enabled participants to produce a framework and research agenda for those who are concerned about algorithmic governance. We outline this research agenda below, providing a detailed map of key research themes, questions and methods that our workshop felt ought to be pursued. This builds upon existing work on research agendas for critical algorithm studies in a unique way through the method of collective intelligence. (shrink)

This paper, which is based on an extensive analysis of the literature, gives a brief overview of the main ways in which solidarity has been employed in bioethical writings in the last two decades. As the vagueness of the term has been one of the main targets of critique, we propose a new approach to defining solidarity, identifying it primarily as a practice enacted at the interpersonal, communal, and contractual/legal levels. Our three-tier model of solidarity can also help to explain (...) the way in which crises of solidarity can occur, notably when formal solidaristic arrangements continue to exist despite ‘lower tiers’ of solidarity practices at inter-personal and communal levels having ‘broken away’. We hope that this contribution to the growing debate on the potential for the value of solidarity to help tackle issues in bioethics and beyond, will stimulate further discussion involving both conceptual and empirically informed perspectives. (shrink)

Mature information societies are characterised by mass production of data that provide insight into human behaviour. Analytics has arisen as a practice to make sense of the data trails generated through interactions with networked devices, platforms and organisations. Persistent knowledge describing the behaviours and characteristics of people can be constructed over time, linking individuals into groups or classes of interest to the platform. Analytics allows for a new type of algorithmically assembled group to be formed that does not necessarily align (...) with classes or attributes already protected by privacy and anti-discrimination law or addressed in fairness- and discrimination-aware analytics. Individuals are linked according to offline identifiers and shared behavioural identity tokens, allowing for predictions and decisions to be taken at a group rather than individual level. This article examines the ethical significance of such ad hoc groups in analytics and argues that the privacy interests of algorithmically assembled groups in inviolate personality must be recognised alongside individual privacy rights. Algorithmically grouped individuals have a collective interest in the creation of information about the group, and actions taken on its behalf. Group privacy is proposed as a third interest to balance alongside individual privacy and social, commercial and epistemic benefits when assessing the ethical acceptability of analytics platforms. (shrink)

Die vorliegende Studie empfiehlt, Leistungsansprüche für Personen mit interventionsfordernden Risiken anhand einer neuen Rechtskategorie, der ‚risikoadaptieren Prävention‘, abzubilden. Spätestens seit dem bioinformatischen Innovationsschub kann eine risikoadaptierte Anwendung von prophylaktischen Maßnahmen umfassend gewährleistet werden. Jedoch können die gegebenen Rechtskategorien das medizinische Anwendungsfeld nicht adäquat steuern. Die Autoren Friedhelm Meier, Anke Harney, Kerstin Rhiem, Anja Neumann, Silke Neusser, Matthias Braun, Jürgen Wasem, Rita Schmutzler, Stefan Huster und Peter Dabrock haben zusammen im BMBF geförderten Projekt SYSKON. Re-Konfiguration von Gesundheit und Krankheit. Ethische, psychosoziale, (...) rechtliche und gesundheitsökonomische Herausforderungen der Systemmedizin die vorliegende Governance Perspective erarbeitet. This book is published open access under a CC BY 4.0 license. (shrink)

Book reviewed in this article: Principles of Biomedical Ethics. By Tom L. Beauchamp and James F. Childress.

What is the impact of information and communication technologies (ICTs) on the human condition? In order to address this question, in 2012 the European Commission organized a research project entitled The Onlife Initiative: concept reengineering for rethinking societal concerns in the digital transition. This volume collects the work of the Onlife Initiative. It explores how the development and widespread use of ICTs have a radical impact on the human condition.