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Best Practices for Ethical Sharing of Individual-Level Health Research Data From Low- and Middle-Income Settings

Sharing individual-level data from clinical and public health research is increasingly being seen as a core requirement for effective and efficient biomedical research. This article discusses the results of a systematic review and multisite qualitative study of key stakeholders’ perspectives on best...

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Autores principales: Bull, Susan, Cheah, Phaik Yeong, Denny, Spencer, Jao, Irene, Marsh, Vicki, Merson, Laura, Shah More, Neena, Nhan, Le Nguyen Thanh, Osrin, David, Tangseefa, Decha, Wassenaar, Douglas, Parker, Michael
Formato: Online Artículo Texto
Lenguaje:English
Publicado: SAGE Publications 2015
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4547207/
https://www.ncbi.nlm.nih.gov/pubmed/26297751
http://dx.doi.org/10.1177/1556264615594606
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author Bull, Susan
Cheah, Phaik Yeong
Denny, Spencer
Jao, Irene
Marsh, Vicki
Merson, Laura
Shah More, Neena
Nhan, Le Nguyen Thanh
Osrin, David
Tangseefa, Decha
Wassenaar, Douglas
Parker, Michael
author_facet Bull, Susan
Cheah, Phaik Yeong
Denny, Spencer
Jao, Irene
Marsh, Vicki
Merson, Laura
Shah More, Neena
Nhan, Le Nguyen Thanh
Osrin, David
Tangseefa, Decha
Wassenaar, Douglas
Parker, Michael
author_sort Bull, Susan
collection PubMed
description Sharing individual-level data from clinical and public health research is increasingly being seen as a core requirement for effective and efficient biomedical research. This article discusses the results of a systematic review and multisite qualitative study of key stakeholders’ perspectives on best practices in ethical data sharing in low- and middle-income settings. Our research suggests that for data sharing to be effective and sustainable, multiple social and ethical requirements need to be met. An effective model of data sharing will be one in which considered judgments will need to be made about how best to achieve scientific progress, minimize risks of harm, promote fairness and reciprocity, and build and sustain trust.
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spelling pubmed-45472072015-08-27 Best Practices for Ethical Sharing of Individual-Level Health Research Data From Low- and Middle-Income Settings Bull, Susan Cheah, Phaik Yeong Denny, Spencer Jao, Irene Marsh, Vicki Merson, Laura Shah More, Neena Nhan, Le Nguyen Thanh Osrin, David Tangseefa, Decha Wassenaar, Douglas Parker, Michael J Empir Res Hum Res Ethics Ethics and Best Practices in Data Sharing in Low and Middle Income Settings Sharing individual-level data from clinical and public health research is increasingly being seen as a core requirement for effective and efficient biomedical research. This article discusses the results of a systematic review and multisite qualitative study of key stakeholders’ perspectives on best practices in ethical data sharing in low- and middle-income settings. Our research suggests that for data sharing to be effective and sustainable, multiple social and ethical requirements need to be met. An effective model of data sharing will be one in which considered judgments will need to be made about how best to achieve scientific progress, minimize risks of harm, promote fairness and reciprocity, and build and sustain trust. SAGE Publications 2015-07 /pmc/articles/PMC4547207/ /pubmed/26297751 http://dx.doi.org/10.1177/1556264615594606 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
Cheah, Phaik Yeong
Denny, Spencer
Jao, Irene
Marsh, Vicki
Merson, Laura
Shah More, Neena
Nhan, Le Nguyen Thanh
Osrin, David
Tangseefa, Decha
Wassenaar, Douglas
Parker, Michael
Best Practices for Ethical Sharing of Individual-Level Health Research Data From Low- and Middle-Income Settings
title Best Practices for Ethical Sharing of Individual-Level Health Research Data From Low- and Middle-Income Settings
title_full Best Practices for Ethical Sharing of Individual-Level Health Research Data From Low- and Middle-Income Settings
title_fullStr Best Practices for Ethical Sharing of Individual-Level Health Research Data From Low- and Middle-Income Settings
title_full_unstemmed Best Practices for Ethical Sharing of Individual-Level Health Research Data From Low- and Middle-Income Settings
title_short Best Practices for Ethical Sharing of Individual-Level Health Research Data From Low- and Middle-Income Settings
title_sort best practices for ethical sharing of individual-level health research data from low- and middle-income settings
topic Ethics and Best Practices in Data Sharing in Low and Middle Income Settings
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4547207/
https://www.ncbi.nlm.nih.gov/pubmed/26297751
http://dx.doi.org/10.1177/1556264615594606
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