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

Oliver Feeney; Gabriele Werner-Felmayer; Helena Siipi; Markus Frischhut; Silvia Zullo; Ursela Barteczko; Lars Øystein Ursin; Shai Linn; Heike Felzmann; Dušanka Krajnović; John Saunders; Vojin Rakić

doi:10.1111/dewb.12240

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

Oliver Feeney, Gabriele Werner-Felmayer, Helena Siipi, Markus Frischhut, Silvia Zullo, Ursela Barteczko, Lars Øystein Ursin, Shai Linn, Heike Felzmann, Dušanka Krajnović, John Saunders, Vojin Rakić

Research output: Contribution to journal › Article › peer-review

Abstract

The effective collection and management of personal data of rapidly migrating populations is important for ensuring adequate healthcare and monitoring of a displaced peoples’ 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.

Original language	English
Pages (from-to)	27-37
Number of pages	11
Journal	Developing World Bioethics
Volume	20
Issue number	1
DOIs	https://doi.org/10.1111/dewb.12240
State	Published - 1 Mar 2020

Bibliographical note

Funding Information:
Markus Frischhut is funded by the European Commission under Erasmus+ (Jean Monnet Chair). No other funding declared. The article is primarily based upon work of the European Division of the UNESCO Chair in Bioethics and has developed out of a European Division project on ePHRs and vulnerable migrants in the European context. This article is also based upon work from COST Action IS1303 'Citizen’s Health through public-private Initiatives: Public health, Market and Ethical perspectives’, supported by COST (European Cooperation in Science and Technology) (http://www.cost.eu). Markus Frischhut wishes to acknowledge his funding from the European Commission under Erasmus+ (Jean Monnet Chair). Previous versions of this paper were presented in the Virtual Conference on Refugee & Migrant Health, Mobility, Human Rights & Responsibilities, hosted online at https://resistingborders.com (October 9-11, 2017); at the 2017 UNESCO Bioethics Ireland Workshop on emerging research in Ireland, hosted by NUI Galway, Ireland (May 25, 2017); and at the 2017 UNESCO Chair in Bioethics 12th World Conference, hosted by the St Raphael Hotel, Limassol, Cyprus (March 21-23, 2017). Many thanks and appreciation are owed to the chairs, organising committees and valuable discussions from co-presenters and participants at these events. We wish to express our sincere thanks to Lisa A. Eckenwiler (Associate Professor Philosophy, Health Administration and Policy, George Mason University), whose extensive comments have greatly strengthened the paper. We wish to thank the peer reviewers for their very useful comments.

Publisher Copyright:
© 2019 John Wiley & Sons Ltd

Keywords

bioethics
electronic personal health records
ethical
legal and social issues (ELSI)
medical records
migration
values
vulnerabilities

ASJC Scopus subject areas

Issues, ethics and legal aspects
Health(social science)
Health Policy

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

Access to Document

10.1111/dewb.12240

Cite this

Feeney, O., Werner-Felmayer, G., Siipi, H., Frischhut, M., Zullo, S., Barteczko, U., Øystein Ursin, L., Linn, S., Felzmann, H., Krajnović, D., Saunders, J., & Rakić, V. (2020). European Electronic Personal Health Records initiatives and vulnerable migrants: A need for greater ethical, legal and social safeguards. Developing World Bioethics, 20(1), 27-37. https://doi.org/10.1111/dewb.12240

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abstract = "The effective collection and management of personal data of rapidly migrating populations is important for ensuring adequate healthcare and monitoring of a displaced peoples{\textquoteright} 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.",

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note = "Funding Information: Markus Frischhut is funded by the European Commission under Erasmus+ (Jean Monnet Chair). No other funding declared. The article is primarily based upon work of the European Division of the UNESCO Chair in Bioethics and has developed out of a European Division project on ePHRs and vulnerable migrants in the European context. This article is also based upon work from COST Action IS1303 'Citizen{\textquoteright}s Health through public-private Initiatives: Public health, Market and Ethical perspectives{\textquoteright}, supported by COST (European Cooperation in Science and Technology) (http://www.cost.eu). Markus Frischhut wishes to acknowledge his funding from the European Commission under Erasmus+ (Jean Monnet Chair). Previous versions of this paper were presented in the Virtual Conference on Refugee & Migrant Health, Mobility, Human Rights & Responsibilities, hosted online at https://resistingborders.com (October 9-11, 2017); at the 2017 UNESCO Bioethics Ireland Workshop on emerging research in Ireland, hosted by NUI Galway, Ireland (May 25, 2017); and at the 2017 UNESCO Chair in Bioethics 12th World Conference, hosted by the St Raphael Hotel, Limassol, Cyprus (March 21-23, 2017). Many thanks and appreciation are owed to the chairs, organising committees and valuable discussions from co-presenters and participants at these events. We wish to express our sincere thanks to Lisa A. Eckenwiler (Associate Professor Philosophy, Health Administration and Policy, George Mason University), whose extensive comments have greatly strengthened the paper. We wish to thank the peer reviewers for their very useful comments. Publisher Copyright: {\textcopyright} 2019 John Wiley & Sons Ltd",

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Feeney, O, Werner-Felmayer, G, Siipi, H, Frischhut, M, Zullo, S, Barteczko, U, Øystein Ursin, L, Linn, S, Felzmann, H, Krajnović, D, Saunders, J & Rakić, V 2020, 'European Electronic Personal Health Records initiatives and vulnerable migrants: A need for greater ethical, legal and social safeguards', Developing World Bioethics, vol. 20, no. 1, pp. 27-37. https://doi.org/10.1111/dewb.12240

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AU - Krajnović, Dušanka

AU - Saunders, John

AU - Rakić, Vojin

N1 - Funding Information: Markus Frischhut is funded by the European Commission under Erasmus+ (Jean Monnet Chair). No other funding declared. The article is primarily based upon work of the European Division of the UNESCO Chair in Bioethics and has developed out of a European Division project on ePHRs and vulnerable migrants in the European context. This article is also based upon work from COST Action IS1303 'Citizen’s Health through public-private Initiatives: Public health, Market and Ethical perspectives’, supported by COST (European Cooperation in Science and Technology) (http://www.cost.eu). Markus Frischhut wishes to acknowledge his funding from the European Commission under Erasmus+ (Jean Monnet Chair). Previous versions of this paper were presented in the Virtual Conference on Refugee & Migrant Health, Mobility, Human Rights & Responsibilities, hosted online at https://resistingborders.com (October 9-11, 2017); at the 2017 UNESCO Bioethics Ireland Workshop on emerging research in Ireland, hosted by NUI Galway, Ireland (May 25, 2017); and at the 2017 UNESCO Chair in Bioethics 12th World Conference, hosted by the St Raphael Hotel, Limassol, Cyprus (March 21-23, 2017). Many thanks and appreciation are owed to the chairs, organising committees and valuable discussions from co-presenters and participants at these events. We wish to express our sincere thanks to Lisa A. Eckenwiler (Associate Professor Philosophy, Health Administration and Policy, George Mason University), whose extensive comments have greatly strengthened the paper. We wish to thank the peer reviewers for their very useful comments. Publisher Copyright: © 2019 John Wiley & Sons Ltd

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

Abstract

Bibliographical note

Keywords

ASJC Scopus subject areas

UN SDGs

Access to Document

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Cite this