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Indigenous Governance Database

Balancing openness with Indigenous data sovereignty: An opportunity to leave no one behind in the journey to sequence all of life

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2022

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Balancing openness with Indigenous data sovereignty_An opportunity to leave no one behind in the journey to sequence all of life
Balancing openness with Indigenous data sovereignty: An opportunity to leave no one behind in the journey to sequence all of life

The field of genomics has benefited greatly from its “openness” approach to data sharing. However, with the increasing volume of sequence information being created and stored and the growing number of international genomics efforts, the equity of openness is under question. The United Nations Convention of Biodiversity aims to develop and adopt a standard policy on access and benefit-sharing for sequence information across signatory parties. This standardization will have profound implications on genomics research, requiring a new definition of open data sharing. The redefinition of openness is not unwarranted, as its limitations have unintentionally introduced barriers of engagement to some, including Indigenous Peoples. This commentary provides an insight into the key challenges of openness faced by the researchers who aspire to protect and conserve global biodiversity, including Indigenous flora and fauna, and presents immediate, practical solutions that, if implemented, will equip the genomics community with both the diversity and inclusivity required to respectfully protect global biodiversity.

data sovereignty, data collection, genomics, international human rights
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Health and Social Services
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The Human Genome Project
Earth BioGenome Project
Genomic justice for Native Americans: Impact of the Havasupai case on genetic research

Ann M. Mc Cartney, Jane Anderson, Libby Liggins, Maui L. Hudson, Matthew Z. Anderson, Ben TeAika, Janis Geary, Robert Cook-Deegan, Hardip R. Patel, Adam M. Phillippy. Balancing openness with Indigenous data sovereignty: An opportunity to leave no one behind in the journey to sequence all of life. Proceedings of the National Academy of Sciences. Jan 2022, 119 (4) e2115860119; DOI: 10.1073/pnas.2115860119

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