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Addressing Privacy Concerns in Sharing Viral Sequences and Minimum Contextual Data in a Public Repository During the COVID-19 Pandemic

COVID-19 was declared to be a pandemic in March 2020 by the World Health Organization. Timely sharing of viral genomic sequencing data accompanied by a minimal set of contextual data is essential for informing regional, national, and international public health responses. Such contextual data is als...

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Autores principales: Song, Lingqiao, Liu, Hanshi, Brinkman, Fiona S. L, Gill, Erin, Griffiths, Emma J., Hsiao, William W. L, Savić-Kallesøe, Sarah, Moreira, Sandrine, Van Domselaar, Gary, Zawati, Ma’n H., Joly, Yann
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Frontiers Media S.A. 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8988250/
https://www.ncbi.nlm.nih.gov/pubmed/35401651
http://dx.doi.org/10.3389/fgene.2021.716541
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author Song, Lingqiao
Liu, Hanshi
Brinkman, Fiona S. L
Gill, Erin
Griffiths, Emma J.
Hsiao, William W. L
Savić-Kallesøe, Sarah
Moreira, Sandrine
Van Domselaar, Gary
Zawati, Ma’n H.
Joly, Yann
author_facet Song, Lingqiao
Liu, Hanshi
Brinkman, Fiona S. L
Gill, Erin
Griffiths, Emma J.
Hsiao, William W. L
Savić-Kallesøe, Sarah
Moreira, Sandrine
Van Domselaar, Gary
Zawati, Ma’n H.
Joly, Yann
author_sort Song, Lingqiao
collection PubMed
description COVID-19 was declared to be a pandemic in March 2020 by the World Health Organization. Timely sharing of viral genomic sequencing data accompanied by a minimal set of contextual data is essential for informing regional, national, and international public health responses. Such contextual data is also necessary for developing, and improving clinical therapies and vaccines, and enhancing the scientific community’s understanding of the SARS-CoV-2 virus. The Canadian COVID-19 Genomics Network (CanCOGeN) was launched in April 2020 to coordinate and upscale existing genomics-based COVID-19 research and surveillance efforts. CanCOGeN is performing large-scale sequencing of both the genomes of SARS-CoV-2 virus samples (VirusSeq) and affected Canadians (HostSeq). This paper addresses the privacy concerns associated with sharing the viral sequence data with a pre-defined set of contextual data describing the sample source and case attribute of the sequence data in the Canadian context. Currently, the viral genome sequences are shared by provincial public health laboratories and their healthcare and academic partners, with the Canadian National Microbiology Laboratory and with publicly accessible databases. However, data sharing delays and the provision of incomplete contextual data often occur because publicly releasing such data triggers privacy and data governance concerns. The CanCOGeN Ethics and Governance Expert Working Group thus has investigated several privacy issues cited by CanCOGeN data providers/stewards. This paper addresses these privacy concerns and offers insights primarily in the Canadian context, although similar privacy considerations also exist in other jurisdictions. We maintain that sharing viral sequencing data and its limited associated contextual data in the public domain generally does not pose insurmountable privacy challenges. However, privacy risks associated with reidentification should be actively monitored due to advancements in reidentification methods and the evolving pandemic landscape. We also argue that during a global health emergency such as COVID-19, privacy should not be used as a blanket measure to prevent such genomic data sharing due to the significant benefits it provides towards public health responses and ongoing research activities.
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spelling pubmed-89882502022-04-08 Addressing Privacy Concerns in Sharing Viral Sequences and Minimum Contextual Data in a Public Repository During the COVID-19 Pandemic Song, Lingqiao Liu, Hanshi Brinkman, Fiona S. L Gill, Erin Griffiths, Emma J. Hsiao, William W. L Savić-Kallesøe, Sarah Moreira, Sandrine Van Domselaar, Gary Zawati, Ma’n H. Joly, Yann Front Genet Genetics COVID-19 was declared to be a pandemic in March 2020 by the World Health Organization. Timely sharing of viral genomic sequencing data accompanied by a minimal set of contextual data is essential for informing regional, national, and international public health responses. Such contextual data is also necessary for developing, and improving clinical therapies and vaccines, and enhancing the scientific community’s understanding of the SARS-CoV-2 virus. The Canadian COVID-19 Genomics Network (CanCOGeN) was launched in April 2020 to coordinate and upscale existing genomics-based COVID-19 research and surveillance efforts. CanCOGeN is performing large-scale sequencing of both the genomes of SARS-CoV-2 virus samples (VirusSeq) and affected Canadians (HostSeq). This paper addresses the privacy concerns associated with sharing the viral sequence data with a pre-defined set of contextual data describing the sample source and case attribute of the sequence data in the Canadian context. Currently, the viral genome sequences are shared by provincial public health laboratories and their healthcare and academic partners, with the Canadian National Microbiology Laboratory and with publicly accessible databases. However, data sharing delays and the provision of incomplete contextual data often occur because publicly releasing such data triggers privacy and data governance concerns. The CanCOGeN Ethics and Governance Expert Working Group thus has investigated several privacy issues cited by CanCOGeN data providers/stewards. This paper addresses these privacy concerns and offers insights primarily in the Canadian context, although similar privacy considerations also exist in other jurisdictions. We maintain that sharing viral sequencing data and its limited associated contextual data in the public domain generally does not pose insurmountable privacy challenges. However, privacy risks associated with reidentification should be actively monitored due to advancements in reidentification methods and the evolving pandemic landscape. We also argue that during a global health emergency such as COVID-19, privacy should not be used as a blanket measure to prevent such genomic data sharing due to the significant benefits it provides towards public health responses and ongoing research activities. Frontiers Media S.A. 2022-03-24 /pmc/articles/PMC8988250/ /pubmed/35401651 http://dx.doi.org/10.3389/fgene.2021.716541 Text en Copyright © 2022 Song, Liu, Brinkman, Gill, Griffiths, Hsiao, Savić-Kallesøe, Moreira, Van Domselaar, Zawati and Joly. https://creativecommons.org/licenses/by/4.0/This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
spellingShingle Genetics
Song, Lingqiao
Liu, Hanshi
Brinkman, Fiona S. L
Gill, Erin
Griffiths, Emma J.
Hsiao, William W. L
Savić-Kallesøe, Sarah
Moreira, Sandrine
Van Domselaar, Gary
Zawati, Ma’n H.
Joly, Yann
Addressing Privacy Concerns in Sharing Viral Sequences and Minimum Contextual Data in a Public Repository During the COVID-19 Pandemic
title Addressing Privacy Concerns in Sharing Viral Sequences and Minimum Contextual Data in a Public Repository During the COVID-19 Pandemic
title_full Addressing Privacy Concerns in Sharing Viral Sequences and Minimum Contextual Data in a Public Repository During the COVID-19 Pandemic
title_fullStr Addressing Privacy Concerns in Sharing Viral Sequences and Minimum Contextual Data in a Public Repository During the COVID-19 Pandemic
title_full_unstemmed Addressing Privacy Concerns in Sharing Viral Sequences and Minimum Contextual Data in a Public Repository During the COVID-19 Pandemic
title_short Addressing Privacy Concerns in Sharing Viral Sequences and Minimum Contextual Data in a Public Repository During the COVID-19 Pandemic
title_sort addressing privacy concerns in sharing viral sequences and minimum contextual data in a public repository during the covid-19 pandemic
topic Genetics
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8988250/
https://www.ncbi.nlm.nih.gov/pubmed/35401651
http://dx.doi.org/10.3389/fgene.2021.716541
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