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Views of Ethical Best Practices in Sharing Individual-Level Data From Medical and Public Health Research: A Systematic Scoping Review

There is increasing support for sharing individual-level data generated by medical and public health research. This scoping review of empirical research and conceptual literature examined stakeholders’ perspectives of ethical best practices in data sharing, particularly in low- and middle-income set...

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Detalles Bibliográficos
Autores principales: Bull, Susan, Roberts, Nia, Parker, Michael
Formato: Online Artículo Texto
Lenguaje:English
Publicado: SAGE Publications 2015
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4548478/
https://www.ncbi.nlm.nih.gov/pubmed/26297745
http://dx.doi.org/10.1177/1556264615594767
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author Bull, Susan
Roberts, Nia
Parker, Michael
author_facet Bull, Susan
Roberts, Nia
Parker, Michael
author_sort Bull, Susan
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description There is increasing support for sharing individual-level data generated by medical and public health research. This scoping review of empirical research and conceptual literature examined stakeholders’ perspectives of ethical best practices in data sharing, particularly in low- and middle-income settings. Sixty-nine empirical and conceptual articles were reviewed, of which, only five were empirical studies and eight were conceptual articles focusing on low- and middle-income settings. We conclude that support for sharing individual-level data is contingent on the development and implementation of international and local policies and processes to support ethical best practices. Further conceptual and empirical research is needed to ensure data sharing policies and processes in low- and middle-income settings are appropriately informed by stakeholders’ perspectives.
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spelling pubmed-45484782015-09-09 Views of Ethical Best Practices in Sharing Individual-Level Data From Medical and Public Health Research: A Systematic Scoping Review Bull, Susan Roberts, Nia Parker, Michael J Empir Res Hum Res Ethics Ethics and Best Practices in Data Sharing in Low and Middle Income Settings There is increasing support for sharing individual-level data generated by medical and public health research. This scoping review of empirical research and conceptual literature examined stakeholders’ perspectives of ethical best practices in data sharing, particularly in low- and middle-income settings. Sixty-nine empirical and conceptual articles were reviewed, of which, only five were empirical studies and eight were conceptual articles focusing on low- and middle-income settings. We conclude that support for sharing individual-level data is contingent on the development and implementation of international and local policies and processes to support ethical best practices. Further conceptual and empirical research is needed to ensure data sharing policies and processes in low- and middle-income settings are appropriately informed by stakeholders’ perspectives. SAGE Publications 2015-07 /pmc/articles/PMC4548478/ /pubmed/26297745 http://dx.doi.org/10.1177/1556264615594767 Text en © The Author(s) 2015 http://creativecommons.org/licenses/by/3.0/ This article is distributed under the terms of the Creative Commons Attribution 3.0 License (http://www.creativecommons.org/licenses/by/3.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page (https://us.sagepub.com/en-us/nam/open-access-at-sage).
spellingShingle Ethics and Best Practices in Data Sharing in Low and Middle Income Settings
Bull, Susan
Roberts, Nia
Parker, Michael
Views of Ethical Best Practices in Sharing Individual-Level Data From Medical and Public Health Research: A Systematic Scoping Review
title Views of Ethical Best Practices in Sharing Individual-Level Data From Medical and Public Health Research: A Systematic Scoping Review
title_full Views of Ethical Best Practices in Sharing Individual-Level Data From Medical and Public Health Research: A Systematic Scoping Review
title_fullStr Views of Ethical Best Practices in Sharing Individual-Level Data From Medical and Public Health Research: A Systematic Scoping Review
title_full_unstemmed Views of Ethical Best Practices in Sharing Individual-Level Data From Medical and Public Health Research: A Systematic Scoping Review
title_short Views of Ethical Best Practices in Sharing Individual-Level Data From Medical and Public Health Research: A Systematic Scoping Review
title_sort views of ethical best practices in sharing individual-level data from medical and public health research: a systematic scoping review
topic Ethics and Best Practices in Data Sharing in Low and Middle Income Settings
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4548478/
https://www.ncbi.nlm.nih.gov/pubmed/26297745
http://dx.doi.org/10.1177/1556264615594767
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