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Is there a duty to participate in digital epidemiology?

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 tha...

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Autores principales: Mittelstadt, Brent, Benzler, Justus, Engelmann, Lukas, Prainsack, Barbara, Vayena, Effy
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer Berlin Heidelberg 2018
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5943201/
https://www.ncbi.nlm.nih.gov/pubmed/29744694
http://dx.doi.org/10.1186/s40504-018-0074-1
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author Mittelstadt, Brent
Benzler, Justus
Engelmann, Lukas
Prainsack, Barbara
Vayena, Effy
author_facet Mittelstadt, Brent
Benzler, Justus
Engelmann, Lukas
Prainsack, Barbara
Vayena, Effy
author_sort Mittelstadt, Brent
collection PubMed
description 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.
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spelling pubmed-59432012018-05-14 Is there a duty to participate in digital epidemiology? Mittelstadt, Brent Benzler, Justus Engelmann, Lukas Prainsack, Barbara Vayena, Effy Life Sci Soc Policy Research 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. Springer Berlin Heidelberg 2018-05-09 /pmc/articles/PMC5943201/ /pubmed/29744694 http://dx.doi.org/10.1186/s40504-018-0074-1 Text en © The Author(s). 2018 Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made.
spellingShingle Research
Mittelstadt, Brent
Benzler, Justus
Engelmann, Lukas
Prainsack, Barbara
Vayena, Effy
Is there a duty to participate in digital epidemiology?
title Is there a duty to participate in digital epidemiology?
title_full Is there a duty to participate in digital epidemiology?
title_fullStr Is there a duty to participate in digital epidemiology?
title_full_unstemmed Is there a duty to participate in digital epidemiology?
title_short Is there a duty to participate in digital epidemiology?
title_sort is there a duty to participate in digital epidemiology?
topic Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5943201/
https://www.ncbi.nlm.nih.gov/pubmed/29744694
http://dx.doi.org/10.1186/s40504-018-0074-1
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