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Extending the CARE Principles from tribal research policies to benefit sharing in genomic research

Indigenous Peoples have historically been targets of extractive research that has led to little to no benefit. In genomics, such research not only exposes communities to harms and risks of misuse, but also deprives such communities of potential benefits. Tribes in the US have been exercising their s...

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Autores principales: Carroll, Stephanie Russo, Plevel, Rebecca, Jennings, Lydia L., Garba, Ibrahim, Sterling, Rogena, Cordova-Marks, Felina M., Hiratsuka, Vanessa, Hudson, Maui, Garrison, Nanibaa’ A.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Frontiers Media S.A. 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9691892/
https://www.ncbi.nlm.nih.gov/pubmed/36437947
http://dx.doi.org/10.3389/fgene.2022.1052620
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author Carroll, Stephanie Russo
Plevel, Rebecca
Jennings, Lydia L.
Garba, Ibrahim
Sterling, Rogena
Cordova-Marks, Felina M.
Hiratsuka, Vanessa
Hudson, Maui
Garrison, Nanibaa’ A.
author_facet Carroll, Stephanie Russo
Plevel, Rebecca
Jennings, Lydia L.
Garba, Ibrahim
Sterling, Rogena
Cordova-Marks, Felina M.
Hiratsuka, Vanessa
Hudson, Maui
Garrison, Nanibaa’ A.
author_sort Carroll, Stephanie Russo
collection PubMed
description Indigenous Peoples have historically been targets of extractive research that has led to little to no benefit. In genomics, such research not only exposes communities to harms and risks of misuse, but also deprives such communities of potential benefits. Tribes in the US have been exercising their sovereignty to limit this extractive practice by adopting laws and policies to govern research on their territories and with their citizens. Federally and state recognized tribes are in the strongest position to assert research oversight. Other tribes lack the same authority, given that federal and state governments do not recognize their rights to regulate research, resulting in varying levels of oversight by tribes. These governance measures establish collective protections absent from the US federal government’s research oversight infrastructure, while setting expectations regarding benefits to tribes as political collectives. Using a legal epidemiology approach, the paper discusses findings from a review of Tribal research legislation, policy, and administrative materials from 26 tribes in the US. The discussion specifies issues viewed by tribes as facilitators and barriers to securing benefits from research for their nations and members/citizens, and describes preemptive and mitigating strategies pursued by tribes in response. These strategies are set within the framing of the CARE Principles for Indigenous Data Governance (Collective Benefit, Authority to Control, Responsibility, Ethics), a set of standards developed to ensure that decisions made about data pertaining to Indigenous communities at the individual and tribal levels are responsive to their values and collective interests. Our findings illustrate gaps to address for benefit sharing and a need to strengthen Responsibility and Ethics in tribal research governance.
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spelling pubmed-96918922022-11-26 Extending the CARE Principles from tribal research policies to benefit sharing in genomic research Carroll, Stephanie Russo Plevel, Rebecca Jennings, Lydia L. Garba, Ibrahim Sterling, Rogena Cordova-Marks, Felina M. Hiratsuka, Vanessa Hudson, Maui Garrison, Nanibaa’ A. Front Genet Genetics Indigenous Peoples have historically been targets of extractive research that has led to little to no benefit. In genomics, such research not only exposes communities to harms and risks of misuse, but also deprives such communities of potential benefits. Tribes in the US have been exercising their sovereignty to limit this extractive practice by adopting laws and policies to govern research on their territories and with their citizens. Federally and state recognized tribes are in the strongest position to assert research oversight. Other tribes lack the same authority, given that federal and state governments do not recognize their rights to regulate research, resulting in varying levels of oversight by tribes. These governance measures establish collective protections absent from the US federal government’s research oversight infrastructure, while setting expectations regarding benefits to tribes as political collectives. Using a legal epidemiology approach, the paper discusses findings from a review of Tribal research legislation, policy, and administrative materials from 26 tribes in the US. The discussion specifies issues viewed by tribes as facilitators and barriers to securing benefits from research for their nations and members/citizens, and describes preemptive and mitigating strategies pursued by tribes in response. These strategies are set within the framing of the CARE Principles for Indigenous Data Governance (Collective Benefit, Authority to Control, Responsibility, Ethics), a set of standards developed to ensure that decisions made about data pertaining to Indigenous communities at the individual and tribal levels are responsive to their values and collective interests. Our findings illustrate gaps to address for benefit sharing and a need to strengthen Responsibility and Ethics in tribal research governance. Frontiers Media S.A. 2022-11-11 /pmc/articles/PMC9691892/ /pubmed/36437947 http://dx.doi.org/10.3389/fgene.2022.1052620 Text en Copyright © 2022 Carroll, Plevel, Jennings, Garba, Sterling, Cordova-Marks, Hiratsuka, Hudson and Garrison. 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
Carroll, Stephanie Russo
Plevel, Rebecca
Jennings, Lydia L.
Garba, Ibrahim
Sterling, Rogena
Cordova-Marks, Felina M.
Hiratsuka, Vanessa
Hudson, Maui
Garrison, Nanibaa’ A.
Extending the CARE Principles from tribal research policies to benefit sharing in genomic research
title Extending the CARE Principles from tribal research policies to benefit sharing in genomic research
title_full Extending the CARE Principles from tribal research policies to benefit sharing in genomic research
title_fullStr Extending the CARE Principles from tribal research policies to benefit sharing in genomic research
title_full_unstemmed Extending the CARE Principles from tribal research policies to benefit sharing in genomic research
title_short Extending the CARE Principles from tribal research policies to benefit sharing in genomic research
title_sort extending the care principles from tribal research policies to benefit sharing in genomic research
topic Genetics
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9691892/
https://www.ncbi.nlm.nih.gov/pubmed/36437947
http://dx.doi.org/10.3389/fgene.2022.1052620
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