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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, 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 Life Sciences, Society and Policy 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.

Life Sciences, Society and Policy offers authors from science, social science and the humanities a podium to discuss, compare, and assess approaches to responsible innovation, considering controversial questions and broadening the theoretical perspective. For more information on our scope, submission guidelines or to read some of our other articles, take a look at our website.

  1. This paper poses the question of whether people have a duty to participate in digital epidemiology. While an implied duty to participate has been argued for in relation to biomedical research in general, digit...

    Authors: Brent Mittelstadt, Justus Benzler, Lukas Engelmann, Barbara Prainsack and Effy Vayena
    Citation: Life Sciences, Society and Policy 2018 14:9
  2. Communication by public authorities during a crisis situation is an essential and indispensable part of any response to a situation that may threaten both life and property. In the online connected world possi...

    Authors: Paul Quinn
    Citation: Life Sciences, Society and Policy 2018 14:4
  3. Digital Epidemiology is a new field that has been growing rapidly in the past few years, fueled by the increasing availability of data and computing power, as well as by breakthroughs in data analytics methods...

    Authors: Marcel Salathé
    Citation: Life Sciences, Society and Policy 2018 14:1
  4. We address the question “does digital epidemiology represent an epistemic shift in infectious disease epidemiology” from a statistician’s viewpoint. Our main argument is that infectious disease epidemiology ha...

    Authors: Michael Höhle
    Citation: Life Sciences, Society and Policy 2017 13:17