Is there a duty to participate in digital epidemiology?

Life Sciences, Society and Policy 14 (1):1-24 (2018)
  Copy   BIBTEX

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.

Other Versions

No versions found

Links

PhilArchive



    Upload a copy of this work     Papers currently archived: 103,343

External links

Setup an account with your affiliations in order to access resources via your University's proxy server

Through your library

Similar books and articles

A statistician’s perspective on digital epidemiology.Michael Höhle - 2017 - Life Sciences, Society and Policy 13 (1):1-4.
Digital epidemiology: what is it, and where is it going?Marcel Salathé - 2018 - Life Sciences, Society and Policy 14 (1):1-5.
The Digital Phenotype: a Philosophical and Ethical Exploration.Michele Loi - 2019 - Philosophy and Technology 32 (1):155-171.
On the Duty to Be an Attention Ecologist.Tim Aylsworth & Clinton Castro - 2022 - Philosophy and Technology 35 (1):1-22.
The Obligation to Participate in Biomedical Research.G. Owen Schaefer, Ezekiel J. Emanuel & Alan Wertheimer - 2009 - Journal of the American Medical Association 302 (1):67-72.

Analytics

Added to PP
2018-06-30

Downloads
47 (#491,890)

6 months
7 (#469,699)

Historical graph of downloads
How can I increase my downloads?

Author Profiles