The capacity to collect and analyse data is growing exponentially. Referred to as ‘Big Data’, this scientific, social and technological trend has helped create destabilising amounts of information, which can challenge accepted social and ethical norms. Big Data remains a fuzzy idea, emerging across social, scientific, and business contexts sometimes seemingly related only by the gigantic size of the datasets being considered. As is often the case with the cutting edge of scientific and technological progress, understanding of the ethical implications (...) of Big Data lags behind. In order to bridge such a gap, this article systematically and comprehensively analyses academic literature concerning the ethical implications of Big Data, providing a watershed for future ethical investigations and regulations. Particular attention is paid to biomedical Big Data due to the inherent sensitivity of medical information. By means of a meta-analysis of the literature, a thematic narrative is provided to guide ethicists, data scientists, regulators and other stakeholders through what is already known or hypothesised about the ethical risks of this emerging and innovative phenomenon. Five key areas of concern are identified: informed consent, privacy, ownership, epistemology and objectivity, and ‘Big Data Divides’ created between those who have or lack the necessary resources to analyse increasingly large datasets. Critical gaps in the treatment of these themes are identified with suggestions for future research. Six additional areas of concern are then suggested which, although related have not yet attracted extensive debate in the existing literature. It is argued that they will require much closer scrutiny in the immediate future: the dangers of ignoring group-level ethical harms; the importance of epistemology in assessing the ethics of Big Data; the changing nature of fiduciary relationships that become increasingly data saturated; the need to distinguish between ‘academic’ and ‘commercial’ Big Data practices in terms of potential harm to data subjects; future problems with ownership of intellectual property generated from analysis of aggregated datasets; and the difficulty of providing meaningful access rights to individual data subjects that lack necessary resources. Considered together, these eleven themes provide a thorough critical framework to guide ethical assessment and governance of emerging Big Data practices. (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.

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)

This article examines how the availability of Big Data, coupled with new data analytics, challenges established epistemologies across the sciences, social sciences and humanities, and assesses the extent to which they are engendering paradigm shifts across multiple disciplines. In particular, it critically explores new forms of empiricism that declare ‘the end of theory’, the creation of data-driven rather than knowledge-driven science, and the development of digital humanities and computational social sciences that propose radically different ways to make sense of culture, (...) history, economy and society. It is argued that: Big Data and new data analytics are disruptive innovations which are reconfiguring in many instances how research is conducted; and there is an urgent need for wider critical reflection within the academy on the epistemological implications of the unfolding data revolution, a task that has barely begun to be tackled despite the rapid changes in research practices presently taking place. After critically reviewing emerging epistemological positions, it is contended that a potentially fruitful approach would be the development of a situated, reflexive and contextually nuanced epistemology. (shrink)

This paper explores the politics of representing events in the world in the form of data points, data sets, or data associations. Data collection involves an act of seeing and recording something that was previously hidden and possibly unnamed. The incidences included in a data set are not random or unrelated but stand for coherent, classifiable phenomena in the world. Moreover, for data to have an impact on law and policy, such information must be seen as actionable, that is, the (...) aggregated data must show people both something they can perceive and something that demands interrogation, explanation, or resolution. Actionable data problematize the taken-for-granted order of society by pointing to questions or imbalances that can be corrected or rectified, or simply better understood, through systematic compilations of occurrences, frequencies, distributions, or correlations. The paper describes and analyzes three different modes of authorized seeing that render data on global environmental phenomena such as climate change both visible and actionable. It argues that the political force of environmental data compilations derives from the divergent epistemological standpoints and expert practices associated with producing views from nowhere, everywhere, and somewhere. (shrink)

Traditional conceptions of informed consent seem difficult or even impossible to apply to new technologies like biobanks, big data, or GMOs, where vast numbers of people are potentially affected, and where consequences and risks are indeterminate or even unforeseeable. Likewise, the principle has come under strain with the appropriation and monetisation of personal information on digital platforms. Over time, it has largely been reduced to bare assent to formalistic legal agreements. To address the current ineffectiveness of the norm of informed (...) consent, I suggest that we need a notion of structural injustice (on a distinctive interpretation, elaborated here, which takes account of unequal power and property relations). I then argue that in order to protect and enhance people's freedom, we have to go beyond traditional applied ethics and introduce perspectives from democratic theory and social philosophy. I attempt to show how applications of the ‘all‐affected principle’, together with new forms of democratic participation, deliberation, and representation can helpfully frame the narrower principle of informed consent. There is an important role for what we could call collective consent, and informed consent can only succeed in increasing individual agency if it is situated within enhanced forms of democratic decision‐making. (shrink)

Genetic research attracts significant attention from the popular press, and often these representations are less than ideal, skewing toward hyperbole and promises of near-future benefits. Indeed, revolutionary language has permeated public discourse since the start of the Human Genome Project in the early 1990s. If the near constant parade of enthusiastic headlines is to be believed, we have been in the midst of a "genetic revolution" for over three decades, yet, the promised revolutionary changes never fully materialize, at least not (...) to the extent envisioned by the proselytizers. The revolution is always just around the corner. Moreover, the nature and impact of the promised revolution is... (shrink)

Genetic research has moved from Mendelian genetics to sequence maps to the study of natural human genetic variation at the level of the genome. This past decade of discovery has been accompanied by a shift in emphasis towards the ethical principles of reciprocity, mutuality, solidarity, citizenry and universality.