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The use of data from electronic health records in times of a pandemic—a legal and ethical assessment

National electronic health record systems controlled (at least in parts) by the patient are becoming increasingly common. During a pandemic, data stored in such records could be used by health authorities to identify persons with a particular health risk. In this contribution, the authors focus-from...

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Autores principales: Stoeger, Karl, Schmidhuber, Martina
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Oxford University Press 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7337813/
https://www.ncbi.nlm.nih.gov/pubmed/32793374
http://dx.doi.org/10.1093/jlb/lsaa041
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author Stoeger, Karl
Schmidhuber, Martina
author_facet Stoeger, Karl
Schmidhuber, Martina
author_sort Stoeger, Karl
collection PubMed
description National electronic health record systems controlled (at least in parts) by the patient are becoming increasingly common. During a pandemic, data stored in such records could be used by health authorities to identify persons with a particular health risk. In this contribution, the authors focus-from the perspective of law and medical ethics-on the question whether such state access to data could, under certain circumstances, be disadvantageous to a person’s state of health in the long run. This may be the case if the data extracted is not only used for the purpose of informing persons, but serves as a basis for measures taken against the will of the individual concerned. This might be perceived as a “breach of trust” and could result in persons opting out of or not opting into an electronic health record system. Such unintended consequences raise concerns from an ethical and a legal point of view. It follows that, even in times of a pandemic, access to personal data stored in patient-controlled health records should be used as a last resort only. While this contribution deals with the legal framework within the EU, its considerations are transferable to other national electronic health record systems.
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spelling pubmed-73378132020-07-08 The use of data from electronic health records in times of a pandemic—a legal and ethical assessment Stoeger, Karl Schmidhuber, Martina J Law Biosci Original Article National electronic health record systems controlled (at least in parts) by the patient are becoming increasingly common. During a pandemic, data stored in such records could be used by health authorities to identify persons with a particular health risk. In this contribution, the authors focus-from the perspective of law and medical ethics-on the question whether such state access to data could, under certain circumstances, be disadvantageous to a person’s state of health in the long run. This may be the case if the data extracted is not only used for the purpose of informing persons, but serves as a basis for measures taken against the will of the individual concerned. This might be perceived as a “breach of trust” and could result in persons opting out of or not opting into an electronic health record system. Such unintended consequences raise concerns from an ethical and a legal point of view. It follows that, even in times of a pandemic, access to personal data stored in patient-controlled health records should be used as a last resort only. While this contribution deals with the legal framework within the EU, its considerations are transferable to other national electronic health record systems. Oxford University Press 2020-06-16 /pmc/articles/PMC7337813/ /pubmed/32793374 http://dx.doi.org/10.1093/jlb/lsaa041 Text en © The Author(s) 2020. Published by Oxford University Press on behalf of Duke University School of Law, Harvard Law School, Oxford University Press, and Stanford Law School. https://creativecommons.org/licenses/by-nc-nd/4.0/This is an Open Access article distributed under the terms of the Creative Commons Attribution NonCommercial-NoDerivs licence (http://creativecommons.org/licenses/by-nc-nd/4.0/ (https://creativecommons.org/licenses/by-nc-nd/4.0/) ), which permits non-commercial reproduction and distribution of the work, in any medium, provided the original work is not altered or transformed in any way, and that the work is properly cited. For commercial re-use, please contact journals.permissions@oup.com
spellingShingle Original Article
Stoeger, Karl
Schmidhuber, Martina
The use of data from electronic health records in times of a pandemic—a legal and ethical assessment
title The use of data from electronic health records in times of a pandemic—a legal and ethical assessment
title_full The use of data from electronic health records in times of a pandemic—a legal and ethical assessment
title_fullStr The use of data from electronic health records in times of a pandemic—a legal and ethical assessment
title_full_unstemmed The use of data from electronic health records in times of a pandemic—a legal and ethical assessment
title_short The use of data from electronic health records in times of a pandemic—a legal and ethical assessment
title_sort use of data from electronic health records in times of a pandemic—a legal and ethical assessment
topic Original Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7337813/
https://www.ncbi.nlm.nih.gov/pubmed/32793374
http://dx.doi.org/10.1093/jlb/lsaa041
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