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Ethical issues in public health surveillance: a systematic qualitative review

BACKGROUND: Public health surveillance is not ethically neutral and yet, ethics guidance and training for surveillance programmes is sparse. Development of ethics guidance should be based on comprehensive and transparently derived overviews of ethical issues and arguments. However, existing overview...

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Autores principales: Klingler, Corinna, Silva, Diego Steven, Schuermann, Christopher, Reis, Andreas Alois, Saxena, Abha, Strech, Daniel
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2017
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5381137/
https://www.ncbi.nlm.nih.gov/pubmed/28376752
http://dx.doi.org/10.1186/s12889-017-4200-4
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author Klingler, Corinna
Silva, Diego Steven
Schuermann, Christopher
Reis, Andreas Alois
Saxena, Abha
Strech, Daniel
author_facet Klingler, Corinna
Silva, Diego Steven
Schuermann, Christopher
Reis, Andreas Alois
Saxena, Abha
Strech, Daniel
author_sort Klingler, Corinna
collection PubMed
description BACKGROUND: Public health surveillance is not ethically neutral and yet, ethics guidance and training for surveillance programmes is sparse. Development of ethics guidance should be based on comprehensive and transparently derived overviews of ethical issues and arguments. However, existing overviews on surveillance ethics are limited in scope and in how transparently they derived their results. Our objective was accordingly to provide an overview of ethical issues in public health surveillance; in addition, to list the arguments put forward with regards to arguably the most contested issue in surveillance, that is whether to obtain informed consent. METHODS: Ethical issues were defined based on principlism. We assumed an ethical issue to arise in surveillance when a relevant normative principle is not adequately considered or two principles come into conflict. We searched Pubmed and Google Books for relevant publications. We analysed and synthesized the data using qualitative content analysis. RESULTS: Our search strategy retrieved 525 references of which 83 were included in the analysis. We identified 86 distinct ethical issues arising in the different phases of the surveillance life-cycle. We further identified 20 distinct conditions that make it more or less justifiable to forego informed consent procedures. CONCLUSIONS: This is the first systematic qualitative review of ethical issues in public health surveillance resulting in a comprehensive ethics matrix that can inform guidelines, reports, strategy papers, and educational material and raise awareness among practitioners. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1186/s12889-017-4200-4) contains supplementary material, which is available to authorized users.
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spelling pubmed-53811372017-04-10 Ethical issues in public health surveillance: a systematic qualitative review Klingler, Corinna Silva, Diego Steven Schuermann, Christopher Reis, Andreas Alois Saxena, Abha Strech, Daniel BMC Public Health Research Article BACKGROUND: Public health surveillance is not ethically neutral and yet, ethics guidance and training for surveillance programmes is sparse. Development of ethics guidance should be based on comprehensive and transparently derived overviews of ethical issues and arguments. However, existing overviews on surveillance ethics are limited in scope and in how transparently they derived their results. Our objective was accordingly to provide an overview of ethical issues in public health surveillance; in addition, to list the arguments put forward with regards to arguably the most contested issue in surveillance, that is whether to obtain informed consent. METHODS: Ethical issues were defined based on principlism. We assumed an ethical issue to arise in surveillance when a relevant normative principle is not adequately considered or two principles come into conflict. We searched Pubmed and Google Books for relevant publications. We analysed and synthesized the data using qualitative content analysis. RESULTS: Our search strategy retrieved 525 references of which 83 were included in the analysis. We identified 86 distinct ethical issues arising in the different phases of the surveillance life-cycle. We further identified 20 distinct conditions that make it more or less justifiable to forego informed consent procedures. CONCLUSIONS: This is the first systematic qualitative review of ethical issues in public health surveillance resulting in a comprehensive ethics matrix that can inform guidelines, reports, strategy papers, and educational material and raise awareness among practitioners. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1186/s12889-017-4200-4) contains supplementary material, which is available to authorized users. BioMed Central 2017-04-04 /pmc/articles/PMC5381137/ /pubmed/28376752 http://dx.doi.org/10.1186/s12889-017-4200-4 Text en © The Author(s). 2017 Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
spellingShingle Research Article
Klingler, Corinna
Silva, Diego Steven
Schuermann, Christopher
Reis, Andreas Alois
Saxena, Abha
Strech, Daniel
Ethical issues in public health surveillance: a systematic qualitative review
title Ethical issues in public health surveillance: a systematic qualitative review
title_full Ethical issues in public health surveillance: a systematic qualitative review
title_fullStr Ethical issues in public health surveillance: a systematic qualitative review
title_full_unstemmed Ethical issues in public health surveillance: a systematic qualitative review
title_short Ethical issues in public health surveillance: a systematic qualitative review
title_sort ethical issues in public health surveillance: a systematic qualitative review
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5381137/
https://www.ncbi.nlm.nih.gov/pubmed/28376752
http://dx.doi.org/10.1186/s12889-017-4200-4
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