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Empowering Equitable Data Use Partnerships and Indigenous Data Sovereignties Amid Pandemic Genomics

The COVID-19 pandemic has inequitably impacted Indigenous communities in the United States. In this emergency state that highlighted existing inadequacies in US government and tribal public health infrastructures, many tribal nations contracted with commercial entities and other organization types t...

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Autores principales: Haring, Rodney C., Blanchard, Jessica W., Korchmaros, Josephine D., Lund, Justin R., Haozous, Emily A., Raphaelito, Josie, Hudson, Maui, Tsosie, Krystal S.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Frontiers Media S.A. 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8632014/
https://www.ncbi.nlm.nih.gov/pubmed/34858924
http://dx.doi.org/10.3389/fpubh.2021.742467
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author Haring, Rodney C.
Blanchard, Jessica W.
Korchmaros, Josephine D.
Lund, Justin R.
Haozous, Emily A.
Raphaelito, Josie
Hudson, Maui
Tsosie, Krystal S.
author_facet Haring, Rodney C.
Blanchard, Jessica W.
Korchmaros, Josephine D.
Lund, Justin R.
Haozous, Emily A.
Raphaelito, Josie
Hudson, Maui
Tsosie, Krystal S.
author_sort Haring, Rodney C.
collection PubMed
description The COVID-19 pandemic has inequitably impacted Indigenous communities in the United States. In this emergency state that highlighted existing inadequacies in US government and tribal public health infrastructures, many tribal nations contracted with commercial entities and other organization types to conduct rapid diagnostic and antibody testing, often based on proprietary technologies specific to the novel pathogen. They also partnered with public-private enterprises on clinical trials to further the development of vaccines. Indigenous people contributed biological samples for assessment and, in many cases, broadly consented for indefinite use for future genomics research. A concern is that the need for crisis aid may have placed Indigenous communities in a position to forego critical review of data use agreements by tribal research governances. In effect, tribal nations were placed in the unenviable position of trading short-term public health assistance for long-term, unrestricted access to Indigenous genomes that may disempower future tribal sovereignties over community members' data. Diagnostic testing, specimen collection, and vaccine research is ongoing; thus, our aim is to outline pathways to trust that center current and future equitable relationship-building between tribal entities and public-private interests. These pathways can be utilized to increase Indigenous communities' trust of external partners and share understanding of expectations for and execution of data protections. We discuss how to navigate genomic-based data use agreements in the context of pathogen genomics. While we focus on US tribal nations, Indigenous genomic data sovereignties relate to global Indigenous nations regardless of colonial government recognition.
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spelling pubmed-86320142021-12-01 Empowering Equitable Data Use Partnerships and Indigenous Data Sovereignties Amid Pandemic Genomics Haring, Rodney C. Blanchard, Jessica W. Korchmaros, Josephine D. Lund, Justin R. Haozous, Emily A. Raphaelito, Josie Hudson, Maui Tsosie, Krystal S. Front Public Health Public Health The COVID-19 pandemic has inequitably impacted Indigenous communities in the United States. In this emergency state that highlighted existing inadequacies in US government and tribal public health infrastructures, many tribal nations contracted with commercial entities and other organization types to conduct rapid diagnostic and antibody testing, often based on proprietary technologies specific to the novel pathogen. They also partnered with public-private enterprises on clinical trials to further the development of vaccines. Indigenous people contributed biological samples for assessment and, in many cases, broadly consented for indefinite use for future genomics research. A concern is that the need for crisis aid may have placed Indigenous communities in a position to forego critical review of data use agreements by tribal research governances. In effect, tribal nations were placed in the unenviable position of trading short-term public health assistance for long-term, unrestricted access to Indigenous genomes that may disempower future tribal sovereignties over community members' data. Diagnostic testing, specimen collection, and vaccine research is ongoing; thus, our aim is to outline pathways to trust that center current and future equitable relationship-building between tribal entities and public-private interests. These pathways can be utilized to increase Indigenous communities' trust of external partners and share understanding of expectations for and execution of data protections. We discuss how to navigate genomic-based data use agreements in the context of pathogen genomics. While we focus on US tribal nations, Indigenous genomic data sovereignties relate to global Indigenous nations regardless of colonial government recognition. Frontiers Media S.A. 2021-11-11 /pmc/articles/PMC8632014/ /pubmed/34858924 http://dx.doi.org/10.3389/fpubh.2021.742467 Text en Copyright © 2021 Haring, Blanchard, Korchmaros, Lund, Haozous, Raphaelito, Hudson and Tsosie. 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 Public Health
Haring, Rodney C.
Blanchard, Jessica W.
Korchmaros, Josephine D.
Lund, Justin R.
Haozous, Emily A.
Raphaelito, Josie
Hudson, Maui
Tsosie, Krystal S.
Empowering Equitable Data Use Partnerships and Indigenous Data Sovereignties Amid Pandemic Genomics
title Empowering Equitable Data Use Partnerships and Indigenous Data Sovereignties Amid Pandemic Genomics
title_full Empowering Equitable Data Use Partnerships and Indigenous Data Sovereignties Amid Pandemic Genomics
title_fullStr Empowering Equitable Data Use Partnerships and Indigenous Data Sovereignties Amid Pandemic Genomics
title_full_unstemmed Empowering Equitable Data Use Partnerships and Indigenous Data Sovereignties Amid Pandemic Genomics
title_short Empowering Equitable Data Use Partnerships and Indigenous Data Sovereignties Amid Pandemic Genomics
title_sort empowering equitable data use partnerships and indigenous data sovereignties amid pandemic genomics
topic Public Health
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8632014/
https://www.ncbi.nlm.nih.gov/pubmed/34858924
http://dx.doi.org/10.3389/fpubh.2021.742467
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