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 use of big data to investigate the spread of infectious diseases or the impact of the built environment on human wellbeing goes beyond the realm of traditional approaches to epidemiology, and includes a large variety of data objects produced by research communities with different methods and goals. This paper addresses the conditions under which researchers link, search and interpret such diverse data by focusing on “data mash-ups”—that is the linking of data from epidemiology, biomedicine, climate and environmental science, which (...) is typically achieved by holding one or more basic parameters, such as geolocation, as invariant. We argue that this strategy works best when epidemiologists interpret localisation procedures through an idiographic perspective that recognises their context-dependence and supports a critical evaluation of the epistemic value of geolocation data whenever they are used for new research purposes. Approaching invariants as strategic constructs can foster data linkage and re-use, and support carefully-targeted predictions in ways that can meaningfully inform public health. At the same time, it explicitly signals the limitations in the scope and applicability of the original datasets incorporated into big data collections, and thus the situated nature of data linkage exercises and their predictive power. (shrink)

Key to precision medicine is the development of expert database projects that gather data, integrate them in the pre-existing database, and publish the product of their processing for others to make use of. Increasingly, it is required that data infrastructure managers and curators pursue and lead research projects on the data so as to learn about new ways data could be used or information that could be potentially generated from them. I call these efforts “data curation-research” and use the case (...) study of COSMIC, the Catalogue of Somatic Mutations in Cancer, to analyze the contextual factors shaping the science of data curation-research. I build on March’s organizational learning categories of exploitation and exploration to place these factors within a theory of organizational change and innovation, and contribute to a richer picture of the social drivers of cancer genomics. (shrink)

Randomized controlled trials test new drugs using various debiasing devices to prevent participants from manipulating the trials. But participants often dislike controls, arguing that they impose a paternalist constraint on their legitimate preferences. The 21st Century Cures Act, passed by US Congress in 2016, encourages the Food and Drug Administration to use alternative testing methods, incorporating participants’ preferences, for regulatory purposes. We discuss, from a historical perspective, the trade-off between trial impartiality and participants’ freedom. We argue that the only way (...) out is considering which methods improve upon the performance of conventional trials in keeping dangerous or inefficacious compounds out of pharmaceutical markets. (shrink)

The use of big data to investigate the spread of infectious diseases or the impact of the built environment on human wellbeing goes beyond the realm of traditional approaches to epidemiology, and includes a large variety of data objects produced by research communities with different methods and goals. This paper addresses the conditions under which researchers link, search and interpret such diverse data by focusing on “data mash-ups”—that is the linking of data from epidemiology, biomedicine, climate and environmental science, which (...) is typically achieved by holding one or more basic parameters, such as geolocation, as invariant. We argue that this strategy works best when epidemiologists interpret localisation procedures through an idiographic perspective that recognises their context-dependence and supports a critical evaluation of the epistemic value of geolocation data whenever they are used for new research purposes. Approaching invariants as strategic constructs can foster data linkage and re-use, and support carefully-targeted predictions in ways that can meaningfully inform public health. At the same time, it explicitly signals the limitations in the scope and applicability of the original datasets incorporated into big data collections, and thus the situated nature of data linkage exercises and their predictive power. (shrink)