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What constitutes equitable data sharing in global health research? A scoping review of the literature on low-income and middle-income country stakeholders’ perspectives

INTRODUCTION: Despite growing consensus on the need for equitable data sharing, there has been very limited discussion about what this should entail in practice. As a matter of procedural fairness and epistemic justice, the perspectives of low-income and middle-income country (LMIC) stakeholders mus...

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Autores principales: Evertsz, Natalia, Bull, Susan, Pratt, Bridget
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BMJ Publishing Group 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10069505/
https://www.ncbi.nlm.nih.gov/pubmed/36977523
http://dx.doi.org/10.1136/bmjgh-2022-010157
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author Evertsz, Natalia
Bull, Susan
Pratt, Bridget
author_facet Evertsz, Natalia
Bull, Susan
Pratt, Bridget
author_sort Evertsz, Natalia
collection PubMed
description INTRODUCTION: Despite growing consensus on the need for equitable data sharing, there has been very limited discussion about what this should entail in practice. As a matter of procedural fairness and epistemic justice, the perspectives of low-income and middle-income country (LMIC) stakeholders must inform concepts of equitable health research data sharing. This paper investigates published perspectives in relation to how equitable data sharing in global health research should be understood. METHODS: We undertook a scoping review (2015 onwards) of the literature on LMIC stakeholders’ experiences and perspectives of data sharing in global health research and thematically analysed the 26 articles included in the review. RESULTS: We report LMIC stakeholders’ published views on how current data sharing mandates may exacerbate inequities, what structural changes are required in order to create an environment conducive to equitable data sharing and what should comprise equitable data sharing in global health research. CONCLUSIONS: In light of our findings, we conclude that data sharing under existing mandates to share data (with minimal restrictions) risks perpetuating a neocolonial dynamic. To achieve equitable data sharing, adopting best practices in data sharing is necessary but insufficient. Structural inequalities in global health research must also be addressed. It is thus imperative that the structural changes needed to ensure equitable data sharing are incorporated into the broader dialogue on global health research.
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spelling pubmed-100695052023-04-04 What constitutes equitable data sharing in global health research? A scoping review of the literature on low-income and middle-income country stakeholders’ perspectives Evertsz, Natalia Bull, Susan Pratt, Bridget BMJ Glob Health Original Research INTRODUCTION: Despite growing consensus on the need for equitable data sharing, there has been very limited discussion about what this should entail in practice. As a matter of procedural fairness and epistemic justice, the perspectives of low-income and middle-income country (LMIC) stakeholders must inform concepts of equitable health research data sharing. This paper investigates published perspectives in relation to how equitable data sharing in global health research should be understood. METHODS: We undertook a scoping review (2015 onwards) of the literature on LMIC stakeholders’ experiences and perspectives of data sharing in global health research and thematically analysed the 26 articles included in the review. RESULTS: We report LMIC stakeholders’ published views on how current data sharing mandates may exacerbate inequities, what structural changes are required in order to create an environment conducive to equitable data sharing and what should comprise equitable data sharing in global health research. CONCLUSIONS: In light of our findings, we conclude that data sharing under existing mandates to share data (with minimal restrictions) risks perpetuating a neocolonial dynamic. To achieve equitable data sharing, adopting best practices in data sharing is necessary but insufficient. Structural inequalities in global health research must also be addressed. It is thus imperative that the structural changes needed to ensure equitable data sharing are incorporated into the broader dialogue on global health research. BMJ Publishing Group 2023-03-28 /pmc/articles/PMC10069505/ /pubmed/36977523 http://dx.doi.org/10.1136/bmjgh-2022-010157 Text en © Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY. Published by BMJ. https://creativecommons.org/licenses/by/4.0/This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/.
spellingShingle Original Research
Evertsz, Natalia
Bull, Susan
Pratt, Bridget
What constitutes equitable data sharing in global health research? A scoping review of the literature on low-income and middle-income country stakeholders’ perspectives
title What constitutes equitable data sharing in global health research? A scoping review of the literature on low-income and middle-income country stakeholders’ perspectives
title_full What constitutes equitable data sharing in global health research? A scoping review of the literature on low-income and middle-income country stakeholders’ perspectives
title_fullStr What constitutes equitable data sharing in global health research? A scoping review of the literature on low-income and middle-income country stakeholders’ perspectives
title_full_unstemmed What constitutes equitable data sharing in global health research? A scoping review of the literature on low-income and middle-income country stakeholders’ perspectives
title_short What constitutes equitable data sharing in global health research? A scoping review of the literature on low-income and middle-income country stakeholders’ perspectives
title_sort what constitutes equitable data sharing in global health research? a scoping review of the literature on low-income and middle-income country stakeholders’ perspectives
topic Original Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10069505/
https://www.ncbi.nlm.nih.gov/pubmed/36977523
http://dx.doi.org/10.1136/bmjgh-2022-010157
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