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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...
Autores principales: | , , , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
SAGE Publications
2015
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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. |
format | Online Article Text |
id | pubmed-4547207 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2015 |
publisher | SAGE Publications |
record_format | MEDLINE/PubMed |
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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