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Digital epidemiology: how big data challenge ethics, society and politics in infectious disease surveillance

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Edited by
Tim Eckmanns, Robert Koch Institute, Berlin, Germany
Leon Hempel, Technical University Berlin, Germany
Kate Polin, Robert Koch Institute, Berlin, Germany
Klaus Scheuermann, Human Technology Lab, Berlin, Germany
Edward Velasco, Robert Koch Institute, Berlin, Germany

The emergence (or re-emergence) of diseases such as SARS, H1N5, Ebola, and Zika in recent years has contributed to a public perception that infectious diseases and their outbreaks are becoming increasingly more of threat to public health globally than ever before. While practitioners and academics may have different opinions, this tension shapes public debate about the extent to which infectious diseases are a threat, and what, given changing discourse and technologies, adequate responses would be. 

Digital epidemiology in infectious disease is a new discipline in the area of big data, which promises faster detection of disease outbreaks and improved surveillance as well as reduction in administrative burden, among other things.  Whom will these methods help? What are their possible negative – consequences and how do we deal with these? To answer these questions well interdisciplinary discourse about digital epidemiology is critical including considering the relevant epistemological/methodological, ethical/legal, social/political, and organizational aspects and implications. The papers in this compilation give some insight into these topics, interrogating how and with what consequences digital epidemiology is shaped by – and might impact – the forces and frameworks at play (including their relationships to each other), and how it may transform societal structures and context, such as global power relations and decision-making around public health. 

This special compilation originates from the international conference DELSI which was held in September 2015 as a joint activity of the Department of Infectious Disease Epidemiology at the Robert Koch Institute and the Center of Technology and Society at the Technical University Berlin, both in Berlin, Germany, and funded by the German Federal Ministry for Education and Research (Förderkennzeichen: 01GP1487). The current work describes aspects and implications of digital epidemiology organized across four dimensions - the epistemological/methodological, ethical/legal,  social/political, and organizational. Some pieces further develop key contributions given at the conference, while others present the results of interdisciplinary discussions between data scientists, epidemiologists and public health practitioners as well as historians of science, ethicists, sociologists, political scientists, cultural and social geographers, and legal scholars.