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2018-05-09Zeitschriftenartikel DOI: 10.25646/5681
Is there a duty to participate in digital epidemiology?
dc.contributor.authorMittelstadt, Brent
dc.contributor.authorBenzler, Justus
dc.contributor.authorEngelmann, Lukas
dc.contributor.authorPrainsack, Barbara
dc.contributor.authorVayena, Effy
dc.date.accessioned2018-09-12T14:34:56Z
dc.date.available2018-09-12T14:34:56Z
dc.date.issued2018-05-09none
dc.identifier.other10.1186/s40504-018-0074-1
dc.identifier.urihttp://edoc.rki.de/176904/5746
dc.description.abstractThis 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.eng
dc.language.isoengnone
dc.publisherRobert Koch-Institut
dc.rights(CC BY 3.0 DE) Namensnennung 3.0 Deutschlandger
dc.rights.urihttp://creativecommons.org/licenses/by/3.0/de/
dc.subject.ddc610 Medizin und Gesundheitnone
dc.titleIs there a duty to participate in digital epidemiology?none
dc.typearticle
dc.identifier.urnurn:nbn:de:kobv:0257-176904/5746-0
dc.identifier.doihttp://dx.doi.org/10.25646/5681
dc.type.versionpublishedVersionnone
local.edoc.container-titleLife Sciences, Society and Policynone
local.edoc.type-nameZeitschriftenartikel
local.edoc.container-typeperiodical
local.edoc.container-type-nameZeitschrift
local.edoc.container-urlhttps://lsspjournal.biomedcentral.com/articles/10.1186/s40504-018-0074-1none
local.edoc.container-publisher-nameBioMedCentralnone
local.edoc.container-volume14none
local.edoc.container-issue9none
local.edoc.container-firstpage1none
local.edoc.container-lastpage24none
local.edoc.rki-departmentInfektionsepidemiologienone
dc.description.versionPeer Reviewednone

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