Why we trust dynamic consent to deliver on privacy

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dc.contributor.authorSchuler Scott, Ariannaen
dc.contributor.authorGoldsmith, Michaelen
dc.contributor.authorTeare, Harrieten
dc.contributor.authorWebb, Helenaen
dc.contributor.authorCreese, Sadieen
dc.date.accessioned2022-10-26T16:46:03Zen
dc.date.available2022-10-26T16:46:03Zen
dc.date.issued2019-01-01en
dc.date.updated2022-10-25T20:26:04Zen
dc.description.abstractDynamic consent has been discussed in theory as a way to show user preferences being taken into account when data is accessed and shared for research purposes. The mechanism is grounded in principles of revocation and engagement – participants may withdraw or edit their permissions at any time, and they receive feedback on the project they are contributing to if they have chosen to do so. The level of granular control offered by dynamic consent means that individuals have informational control over what they are sharing with the study, and to what extent that data can be used further. Rather than attempt to redefine privacy, this paper takes the position that data controllers have certain obligations to protect a data subject’s information and must show trustworthy behaviour to encourage research participation. Our model of privacy is grounded in normative, transaction-based requirements. We argue that dynamic consent is a mechanism that offers data controllers a way to evidence compliance with individual privacy preferences, and data subjects with control as and when they require it. The key difference between dynamic consent and a “rich” database consisting of a dataset with the ability for a subject to revoke access is human engagement, or relations of trust. We must re-think how consent is implemented from the top-down (policy-based) and bottom up (technical architecture) to develop useful privacy controls.en
dc.description.versionPublished versionen
dc.format.extentPages 28-38en
dc.format.mimetypeapplication/pdfen
dc.identifier.doihttps://doi.org/10.1007/978-3-030-33716-2_3en
dc.identifier.isbn9783030337155en
dc.identifier.orcidSchuler Scott, Arianna [0000-0001-6565-8266]en
dc.identifier.urihttp://hdl.handle.net/10919/112283en
dc.identifier.volume563 IFIPen
dc.language.isoenen
dc.publisherSpringeren
dc.relation.ispartofTrust Management XIII. IFIPTM 2019.en
dc.relation.ispartofseriesIFIP Advances in Information and Communication Technologyen
dc.rightsIn Copyrighten
dc.rights.urihttp://rightsstatements.org/vocab/InC/1.0/en
dc.subjectClinical Researchen
dc.subjectPatient Safetyen
dc.subject8 Health and social care services researchen
dc.subject8.3 Policy, ethics, and research governanceen
dc.subjectGeneric health relevanceen
dc.titleWhy we trust dynamic consent to deliver on privacyen
dc.typeBook chapteren
dc.type.dcmitypeTexten
dc.type.otherConference Proceedingen
pubs.organisational-group/Virginia Techen
pubs.organisational-group/Virginia Tech/Pamplin College of Businessen
pubs.organisational-group/Virginia Tech/Pamplin College of Business/Pamplin Administrationen

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