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

No Thumbnail Available
Date
2019-03-25
Authors
Feeney, Oliver
Werner-Felmayer, Gabriele
Siipi, Helena
Frischhut, Markus
Zullo, Silvia
Barteczko, Ursela
Ursin, Lars Øystein
Linn, Shai
Felzmann, Heike
Krajnović, Dušanka
Journal Title
Journal ISSN
Volume Title
Publisher
John Wiley & Sons, Ltd.
Published Version
Research Projects
Organizational Units
Journal Issue
Abstract
The 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.
Description
Keywords
Bioethics , Electronic personal health records , Ethical legal and social issues , ELSI , Medical records , Migration values , Vulnerabilities
Citation
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
Copyright
© 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.