Is There a Duty to Participate in Digital Epidemiology?

Forthcoming in Life Sciences, Society and Policy

23 Pages Posted: 1 May 2018

See all articles by Brent Mittelstadt

Brent Mittelstadt

University of Oxford - Oxford Internet Institute

Justus Benzler

Robert Koch Institute

Lukas Engelmann

University of Edinburgh

Barbara Prainsack

University of Vienna - Department of Political Sciences

Effy Vayena

ETH Zurich

Date Written: April 12, 2018

Abstract

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, digital epidemiology involves processing of non-medical, granular and proprietary data types that pose different risks to participants. We first describe traditional justifications for epidemiology that imply a duty to participate for the general public, which take account of the immediacy and plausibility of threats, and the identifiability of data. We then consider how these justifications translate to digital epidemiology, understood as an evolution of traditional epidemiology that includes personal and proprietary digital data alongside formal medical datasets. We consider the risks imposed by re-purposing such data for digital epidemiology and propose eight justificatory conditions that should be met in justifying a duty to participate for specific digital epidemiological studies. The conditions are then applied to three hypothetical cases involving usage of social media data for epidemiological purposes. We conclude with a list of questions to be considered in public negotiations of digital epidemiology, including the application of a duty to participate to third-party data controllers, and the important distinction between moral and legal obligations to participate in research.

Keywords: bioethics, digital epidemiology, social media, public health, surveillance, ethics

Suggested Citation

Mittelstadt, Brent and Benzler, Justus and Engelmann, Lukas and Prainsack, Barbara and Vayena, Effy, Is There a Duty to Participate in Digital Epidemiology? (April 12, 2018). Forthcoming in Life Sciences, Society and Policy, Available at SSRN: https://ssrn.com/abstract=3161720

Brent Mittelstadt (Contact Author)

University of Oxford - Oxford Internet Institute ( email )

1 St. Giles
University of Oxford
Oxford OX1 3PG Oxfordshire, Oxfordshire OX1 3JS
United Kingdom

Justus Benzler

Robert Koch Institute ( email )

Berlin
Germany

Lukas Engelmann

University of Edinburgh ( email )

Old College
South Bridge
Edinburgh, Scotland EH8 9JY
United Kingdom

Barbara Prainsack

University of Vienna - Department of Political Sciences ( email )

Bruenner Strasse 72
Vienna 1210, Vienna
Austria

Effy Vayena

ETH Zurich ( email )

Zurich, 8001
Switzerland

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