Health‐related data uses and data sharing have been in the spotlight for a while. Since the beginning of the big data era, massive data mining and its inherent possibilities have only increased the debate about what the limits are. Data governance is a relevant aspect addressed in ethics guidelines. In this context, the European project BRIDGE Health (BRidging Information and Data Generation for Evidence‐based Health policy and research) strove to achieve a comprehensive, integrated and sustainable EU health‐information system. One of (...) the aims of the project was to evaluate the requirements to construct a data‐linkage infrastructure for the secure management of health information. In a blueprint provided for this infrastructure, the topics ethics and the intimately related governance occupied a whole section, where the recent ethics guidelines by the Council for International Organizations of Medical Sciences (CIOMS) and the World Medical Association (WMA) were referenced. We explore what has changed in the latest versions of the ethics documents adopted by CIOMS and WMA regarding the management of health data and human tissues, the appropriateness of their application in new forms of research and infrastructures as the proposed in the BRIDGE Health project, and whether society should be so concerned about this topic, in the digital era of social exchange. (shrink)

This groundbreaking, open access volume analyses and compares data practices across several fields through the analysis of specific cases of data journeys. It brings together leading scholars in the philosophy, history and social studies of science to achieve two goals: tracking the travel of data across different spaces, times and domains of research practice; and documenting how such journeys affect the use of data as evidence and the knowledge being produced. The volume captures the opportunities, challenges and concerns involved in (...) making data move from the sites in which they are originally produced to sites where they can be integrated with other data, analysed and re-used for a variety of purposes. The in-depth study of data journeys provides the necessary ground to examine disciplinary, geographical and historical differences and similarities in data management, processing and interpretation, thus identifying the key conditions of possibility for the widespread data sharing associated with Big and Open Data. The chapters are ordered in sections that broadly correspond to different stages of the journeys of data, from their generation to the legitimisation of their use for specific purposes. Additionally, the preface to the volume provides a variety of alternative “roadmaps” aimed to serve the different interests and entry points of readers; and the introduction provides a substantive overview of what data journeys can teach about the methods and epistemology of research. (shrink)

The collection and circulation of data is now a central element of increasingly more sectors of contemporary capitalism. This article analyses data as a form of capital that is distinct from, but has its roots in, economic capital. Data collection is driven by the perpetual cycle of capital accumulation, which in turn drives capital to construct and rely upon a universe in which everything is made of data. The imperative to capture all data, from all sources, by any means possible (...) influences many key decisions about business models, political governance, and technological development. This article argues that many common practices of data accumulation should actually be understood in terms of data extraction, wherein data is taken with little regard for consent and compensation. By understanding data as a form capital, we can better analyse the meaning, practices, and implications of datafication as a political economic regime. (shrink)

Community databases have become crucial to the collection, ordering and retrieval of data gathered on model organisms, as well as to the ways in which these data are interpreted and used across a range of research contexts. This paper analyses the impact of community databases on research practices in model organism biology by focusing on the history and current use of four community databases: FlyBase, Mouse Genome Informatics, WormBase and The Arabidopsis Information Resource. We discuss the standards used by the (...) curators of these databases for what counts as reliable evidence, acceptable terminology, appropriate experimental set-ups and adequate materials (e.g., specimens). On the one hand, these choices are informed by the collaborative research ethos characterising most model organism communities. On the other hand, the deployment of these standards in databases reinforces this ethos and gives it concrete and precise instantiations by shaping the skills, practices, values and background knowledge required of the database users. We conclude that the increasing reliance on community databases as vehicles to circulate data is having a major impact on how researchers conduct and communicate their research, which affects how they understand the biology of model organisms and its relation to the biology of other species. (shrink)

The complete system of knowledge is a standard trope of science fiction, a techno-utopian dream and an aesthetic ideal. It is Solomon’s House, the Encyclopaedia and the Museum. It is also an ideology – of Enlightenment, High Modernism and absolute governance. Far from ending the dream of a total archive, 20th-century positivist rationality brought it ever closer. From Paul Otlet’s ‘Mundaneum’ to Mass-Observation, from the Unity of Science movement to Wikipedia, the dream of universal knowledge dies hard. As a political (...) tool, the total archive encompasses population statistics, gross domestic product, indices of the Standard of Living and the international ideology of the United Nations Educational, Scientific and Cultural Organization, the World Health Organization, the free market and, most recently, Big Data. Questions of the total archive engage key issues in the philosophy of classification, the poetics of the universal, the ideology of surveillance and the technologies of information retrieval. What are the social structures and political dynamics required to sustain total archives, and what are the temporalities implied by such projects? This introduction and the articles that follow describe and place in historical context a series of concrete instances of totality. Our analysis is arranged according to four central themes: the relationship between the Archive (singular) and archives (plural); the image of the archive and the aesthetics of totality; pathologies of accumulation; and the specific historical trajectory of the total archive in the 19th and 20th centuries. (shrink)

In recent years, cross-national collaboration in medical research has gained increased policy attention. Policies are developed to enhance data sharing, ensure open-access, and harmonize international standards and ethics rules in order to promote access to existing resources and increase scientific output. In tandem with this promotion of data sharing, numerous ethics policies are developed to control data flows and protect privacy and confidentiality. Both sets of policy making, however, pay limited attention to the moral decisions and social ties enacted in (...) the everyday routines of scientific work. This paper takes its point of departure in the practices of a Danish laboratory with great experience in international collaboration regarding genetic research. We focus on a simple query, what makes genetic material and health data flow, and which hopes and concerns travel along with them? We explore what we call the flows, the nonflows, and the overflows of material and information, and we document the work producing the flows of health data and biomaterial. We call this work “ethics work” and argue that it is crucial for data sharing though it is rarely articulated in ethics policies, remains inadequately funded, and lacks acknowledgment in policies promoting international data sharing. (shrink)

This paper broadens out existing challenges to the divisions between the human and the animal that keep humans distinct, and apart, from other animals. Much attention to date has focused on how the Euro-American individuation of the human subject intensifies the asymmetries inculcated by these divisions. This paper rehearses some of this literature but goes on to attend to how these divisions undercut understandings of sociality and limit social organization to interaction between persons. Drawing together debates around the human/animal relation, (...) the paper juxtaposes different perspectives of nature-cultures to bring ‘worlds’ of relations into view. Specifically, I distinguish here between the state of ‘being alongside’ and the process of ‘being-with’. Ranging from approaches that try to settle ideas of difference through appeals to ‘ethical health’, through to work on identity that ‘unconceals’ a wealth of connection, this distinction will help to keep apart those situated moments of relations, where the constituent parts are left more provisional and contingent, from more sought-out relationships, where a sense of togetherness purposefully dominates the conjoining of activities. Contrasting hybridity as a totalizing form of ‘being-with’, with alongsideness, as a form of intermittent and partial connection, the analysis eschews the obfuscation of difference entrenched in contemporary emphasis on connectivity. Proposing instead the importance of creatures as ‘division preserving', the paper theorizes ways to sustain regard for division as well as connection as key to understanding the arts of dwelling amidst different kinds. (shrink)