Is there a duty to participate in digital epidemiology?

Brent Mittelstadt,Effy Vayena,Barbara Prainsack,Justus Benzler,Lukas Engelmann

doi:10.1186/s40504-018-0074-1

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.

Highlights

In 2001, Ruth Chadwick and Kåre Berg asked whether a duty exists for the public to contribute samples and data to genetic databases
Criteria to assess a possible duty to participate in digital epidemiology As with the duty to participate in biomedical research, ‘justificatory conditions’ can be identified for a duty to participate in digital epidemiology’ (DE) that, if met, suggest an appropriate balance has been struck between public and individual interests, and relevant general moral considerations
In this paper we have examined the ethical justification and feasibility of establishing a duty to participate in digital epidemiology, following from comparable duties in the context of epidemiology and biomedical research

Summary

Introduction

In 2001, Ruth Chadwick and Kåre Berg asked whether a duty exists for the public to contribute samples and data to genetic databases. Duty to create: individuals have an obligation to participate in research by generating new records and samples, for instance by participating in a clinical trial or by using particular digital technologies, e.g. social media, search engines or personal health tracking devices that share data with researchers

Results

Conclusion