European Electronic Personal Health Records initiatives and vulnerable migrants: A need for greater ethical, legal and social safeguards

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dc.check.date2021-03-25
dc.check.infoAccess to this article is restricted until 24 months after publication by request of the publisher.en
dc.contributor.authorFeeney, Oliver
dc.contributor.authorWerner-Felmayer, Gabriele
dc.contributor.authorSiipi, Helena
dc.contributor.authorFrischhut, Markus
dc.contributor.authorZullo, Silvia
dc.contributor.authorBarteczko, Ursela
dc.contributor.authorUrsin, Lars Øystein
dc.contributor.authorLinn, Shai
dc.contributor.authorFelzmann, Heike
dc.contributor.authorKrajnović, Dušanka
dc.contributor.authorSaunders, John
dc.contributor.authorRakic, Vojin
dc.contributor.funderEuropean Cooperation in Science and Technologyen
dc.contributor.funderErasmus+en
dc.date.accessioned2019-09-09T08:50:37Z
dc.date.available2019-09-09T08:50:37Z
dc.date.issued2019-03-25
dc.date.updated2019-09-09T08:34:11Z
dc.description.abstractThe effective collection and management of personal data of rapidly migrating populations is important for ensuring adequate healthcare and monitoring of a displaced peoplesâ health status. With developments in ICT data sharing capabilities, electronic personal health records (ePHRs) are increasingly replacing less transportable paper records. ePHRs offer further advantages of improving accuracy and completeness of information and seem tailored for rapidly displaced and mobile populations. Various emerging initiatives in Europe are seeking to develop migrant-centric ePHR responses. This paper highlights their importance and benefits, but also identifies a number of significant ethical, legal and social issues (ELSI) and challenges to their design and implementation, regarding (1) the kind of information that should be stored, (2) who should have access to information, and (3) potential misuse of information. These challenges need to be urgently addressed to make possible the beneficial use of ePHRs for vulnerable migrants in Europe.en
dc.description.sponsorshipEuropean Cooperation in Science and Technology (COST Action IS1303 'Citizen’s Health through Public‐Private Initiatives: Public health, Market and Ethical perspectives’); Erasmus+ (Jean Monnet Chair)en
dc.description.statusPeer revieweden
dc.description.versionAccepted Versionen
dc.format.mimetypeapplication/pdfen
dc.identifier.citationFeeney, O., Werner-Felmayer, G., Siipi, H., Frischhut, M., Zullo, S., Barteczko, U., Ursin, L. Ø., Linn, S., Felzmann, H., Krajnović, D., Saunders, J. and Rakic, V. (2019) 'European Electronic Personal Health Records initiatives and vulnerable migrants: A need for greater ethical, legal and social safeguards', Developing World Bioethics, 2019, pp. 1-11. doi: 10.1111/dewb.12240en
dc.identifier.doi10.1111/dewb.12240en
dc.identifier.eissn1471-8847
dc.identifier.endpage11en
dc.identifier.issn1471-8731
dc.identifier.journaltitleDeveloping World Bioethicsen
dc.identifier.startpage1en
dc.identifier.urihttps://hdl.handle.net/10468/8466
dc.identifier.volume2019en
dc.language.isoenen
dc.publisherJohn Wiley & Sons, Ltd.en
dc.relation.urihttps://onlinelibrary.wiley.com/doi/abs/10.1111/dewb.12240
dc.rights© 2019, John Wiley & Sons Ltd. This is the peer reviewed version of the following article: Feeney, O., Werner-Felmayer, G., Siipi, H., Frischhut, M., Zullo, S., Barteczko, U., Ursin, L. Ø, Linn, S., Felzmann, H., Krajnović, D., Saunders, J. and Rakic, V. (2019) 'European Electronic Personal Health Records initiatives and vulnerable migrants: A need for greater ethical, legal and social safeguards', Developing World Bioethics, 2019, pp. 1-11. doi: 10.1111/dewb.12240, which has been published in final form at https://doi.org/10.1111/dewb.12240. This article may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for Use of Self-Archived Versions.en
dc.subjectBioethicsen
dc.subjectElectronic personal health recordsen
dc.subjectEthical legal and social issuesen
dc.subjectELSIen
dc.subjectMedical recordsen
dc.subjectMigration valuesen
dc.subjectVulnerabilitiesen
dc.titleEuropean Electronic Personal Health Records initiatives and vulnerable migrants: A need for greater ethical, legal and social safeguardsen
dc.typeArticle (peer-reviewed)en
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