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...

Descripción completa

Guardado en:

Detalles Bibliográficos
Autores principales:	Rodney C. Haring, Jessica W. Blanchard, Josephine D. Korchmaros, Justin R. Lund, Emily A. Haozous, Josie Raphaelito, Maui Hudson, Krystal S. Tsosie
Formato:	article
Lenguaje:	EN
Publicado:	Frontiers Media S.A. 2021
Materias:	Indigenous American Indian/Alaska Native COVID-19 genomics Indigenous data sovereignty data use agreements Public aspects of medicine RA1-1270
Acceso en línea:	https://doaj.org/article/0841cf63db7443faad8e225faadb89b5
Etiquetas:	Agregar Etiqueta Sin Etiquetas, Sea el primero en etiquetar este registro!

id	oai:doaj.org-article:0841cf63db7443faad8e225faadb89b5
record_format	dspace
spelling	oai:doaj.org-article:0841cf63db7443faad8e225faadb89b52021-11-11T07:00:29ZEmpowering Equitable Data Use Partnerships and Indigenous Data Sovereignties Amid Pandemic Genomics2296-256510.3389/fpubh.2021.742467https://doaj.org/article/0841cf63db7443faad8e225faadb89b52021-11-01T00:00:00Zhttps://www.frontiersin.org/articles/10.3389/fpubh.2021.742467/fullhttps://doaj.org/toc/2296-2565The 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.Rodney C. HaringJessica W. BlanchardJosephine D. KorchmarosJustin R. LundEmily A. HaozousJosie RaphaelitoMaui HudsonKrystal S. TsosieKrystal S. TsosieFrontiers Media S.A.articleIndigenousAmerican Indian/Alaska NativeCOVID-19genomicsIndigenous data sovereigntydata use agreementsPublic aspects of medicineRA1-1270ENFrontiers in Public Health, Vol 9 (2021)
institution	DOAJ
collection	DOAJ
language	EN
topic	Indigenous American Indian/Alaska Native COVID-19 genomics Indigenous data sovereignty data use agreements Public aspects of medicine RA1-1270
spellingShingle	Indigenous American Indian/Alaska Native COVID-19 genomics Indigenous data sovereignty data use agreements Public aspects of medicine RA1-1270 Rodney C. Haring Jessica W. Blanchard Josephine D. Korchmaros Justin R. Lund Emily A. Haozous Josie Raphaelito Maui Hudson Krystal S. Tsosie Krystal S. Tsosie Empowering Equitable Data Use Partnerships and Indigenous Data Sovereignties Amid Pandemic Genomics
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.
format	article
author	Rodney C. Haring Jessica W. Blanchard Josephine D. Korchmaros Justin R. Lund Emily A. Haozous Josie Raphaelito Maui Hudson Krystal S. Tsosie Krystal S. Tsosie
author_facet	Rodney C. Haring Jessica W. Blanchard Josephine D. Korchmaros Justin R. Lund Emily A. Haozous Josie Raphaelito Maui Hudson Krystal S. Tsosie Krystal S. Tsosie
author_sort	Rodney C. Haring
title	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_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_sort	empowering equitable data use partnerships and indigenous data sovereignties amid pandemic genomics
publisher	Frontiers Media S.A.
publishDate	2021
url	https://doaj.org/article/0841cf63db7443faad8e225faadb89b5
work_keys_str_mv	AT rodneycharing empoweringequitabledatausepartnershipsandindigenousdatasovereigntiesamidpandemicgenomics AT jessicawblanchard empoweringequitabledatausepartnershipsandindigenousdatasovereigntiesamidpandemicgenomics AT josephinedkorchmaros empoweringequitabledatausepartnershipsandindigenousdatasovereigntiesamidpandemicgenomics AT justinrlund empoweringequitabledatausepartnershipsandindigenousdatasovereigntiesamidpandemicgenomics AT emilyahaozous empoweringequitabledatausepartnershipsandindigenousdatasovereigntiesamidpandemicgenomics AT josieraphaelito empoweringequitabledatausepartnershipsandindigenousdatasovereigntiesamidpandemicgenomics AT mauihudson empoweringequitabledatausepartnershipsandindigenousdatasovereigntiesamidpandemicgenomics AT krystalstsosie empoweringequitabledatausepartnershipsandindigenousdatasovereigntiesamidpandemicgenomics AT krystalstsosie empoweringequitabledatausepartnershipsandindigenousdatasovereigntiesamidpandemicgenomics
_version_	1718439372123013120

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

Ejemplares similares