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Ethics and governance challenges related to genomic data sharing in southern Africa: the case of SARS-CoV-2

Data sharing in research is fraught with controversy. Academic success is premised on competitive advantage, with research teams protecting their research findings until publication. Research funders, by contrast, often require data sharing. Beyond traditional research and funding requirements, surv...

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Autores principales: Moodley, Keymanthri, Cengiz, Nezerith, Domingo, Aneeka, Nair, Gonasagrie, Obasa, Adetayo Emmanuel, Lessells, Richard John, de Oliveira, Tulio
Formato: Online Artículo Texto
Lenguaje:English
Publicado: 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9826954/
https://www.ncbi.nlm.nih.gov/pubmed/36309034
http://dx.doi.org/10.1016/S2214-109X(22)00417-X
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author Moodley, Keymanthri
Cengiz, Nezerith
Domingo, Aneeka
Nair, Gonasagrie
Obasa, Adetayo Emmanuel
Lessells, Richard John
de Oliveira, Tulio
author_facet Moodley, Keymanthri
Cengiz, Nezerith
Domingo, Aneeka
Nair, Gonasagrie
Obasa, Adetayo Emmanuel
Lessells, Richard John
de Oliveira, Tulio
author_sort Moodley, Keymanthri
collection PubMed
description Data sharing in research is fraught with controversy. Academic success is premised on competitive advantage, with research teams protecting their research findings until publication. Research funders, by contrast, often require data sharing. Beyond traditional research and funding requirements, surveillance data have become contentious. Public health emergencies involving pathogens require intense genomic surveillance efforts and call for the rapid sharing of data on the basis of public interest. Under these circumstances, timely sharing of data becomes a matter of scientific integrity. During the COVID-19 pandemic, the transformative potential of genomic pathogen data sharing became obvious and advanced the debate on data sharing. However, when the genomic sequencing data of the omicron (B.1.1.529) variant was shared and announced by scientists in southern Africa, various challenges arose, including travel bans. The scientific, economic, and moral impact was catastrophic. Yet, travel restrictions failed to mitigate the spread of the variant already present in countries outside Africa. Public perceptions of the negative effect of data sharing are detrimental to the willingness of research participants to consent to sharing data in postpandemic research and future pandemics. Global health governance organisations have an important role in developing guidance on responsible sharing of genomic pathogen data in public health emergencies.
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spelling pubmed-98269542023-01-09 Ethics and governance challenges related to genomic data sharing in southern Africa: the case of SARS-CoV-2 Moodley, Keymanthri Cengiz, Nezerith Domingo, Aneeka Nair, Gonasagrie Obasa, Adetayo Emmanuel Lessells, Richard John de Oliveira, Tulio Lancet Glob Health Article Data sharing in research is fraught with controversy. Academic success is premised on competitive advantage, with research teams protecting their research findings until publication. Research funders, by contrast, often require data sharing. Beyond traditional research and funding requirements, surveillance data have become contentious. Public health emergencies involving pathogens require intense genomic surveillance efforts and call for the rapid sharing of data on the basis of public interest. Under these circumstances, timely sharing of data becomes a matter of scientific integrity. During the COVID-19 pandemic, the transformative potential of genomic pathogen data sharing became obvious and advanced the debate on data sharing. However, when the genomic sequencing data of the omicron (B.1.1.529) variant was shared and announced by scientists in southern Africa, various challenges arose, including travel bans. The scientific, economic, and moral impact was catastrophic. Yet, travel restrictions failed to mitigate the spread of the variant already present in countries outside Africa. Public perceptions of the negative effect of data sharing are detrimental to the willingness of research participants to consent to sharing data in postpandemic research and future pandemics. Global health governance organisations have an important role in developing guidance on responsible sharing of genomic pathogen data in public health emergencies. 2022-12 2022-10-26 /pmc/articles/PMC9826954/ /pubmed/36309034 http://dx.doi.org/10.1016/S2214-109X(22)00417-X Text en https://creativecommons.org/licenses/by-nc-nd/4.0/This is an Open Access article under the CC BY-NC-ND 4.0 license.
spellingShingle Article
Moodley, Keymanthri
Cengiz, Nezerith
Domingo, Aneeka
Nair, Gonasagrie
Obasa, Adetayo Emmanuel
Lessells, Richard John
de Oliveira, Tulio
Ethics and governance challenges related to genomic data sharing in southern Africa: the case of SARS-CoV-2
title Ethics and governance challenges related to genomic data sharing in southern Africa: the case of SARS-CoV-2
title_full Ethics and governance challenges related to genomic data sharing in southern Africa: the case of SARS-CoV-2
title_fullStr Ethics and governance challenges related to genomic data sharing in southern Africa: the case of SARS-CoV-2
title_full_unstemmed Ethics and governance challenges related to genomic data sharing in southern Africa: the case of SARS-CoV-2
title_short Ethics and governance challenges related to genomic data sharing in southern Africa: the case of SARS-CoV-2
title_sort ethics and governance challenges related to genomic data sharing in southern africa: the case of sars-cov-2
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9826954/
https://www.ncbi.nlm.nih.gov/pubmed/36309034
http://dx.doi.org/10.1016/S2214-109X(22)00417-X
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