@article{9513dfe94bd3484d8a2cd304eceeee18,
title = "Balancing openness with Indigenous data sovereignty: An opportunity to leave no one behind in the journey to sequence all of life",
abstract = "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.",
keywords = "Biodiversity, Indigenous Peoples, Open science",
author = "Cartney, {Ann M.Mc} and Jane Anderson and Libby Liggins and Hudson, {Maui L.} and Anderson, {Matthew Z.} and Ben TeAika and Janis Geary and Robert Cook-Deegan and Patel, {Hardip R.} and Phillippy, {Adam M.}",
note = "Funding Information: We thank Carla Easter (Education and Outreach Department of the National Human Genome Research Institute, NIH), Jenny Reardon (University of California, Santa Cruz), Harris Lewin (University of California, Davis), and Jacob S. Sherkow (University of Illinois) for their time in reviewing and consulting in preparation of this manuscript; and IndigiData and SING USA, Canada, and Aotearoa for their support and guidance throughout the manuscript-drafting process. This work was supported, in part, by the Intramural Research Program of the National Human Genome Research Institute, NIH (A.M.M.C. and A.M.P.). J.G. is funded by NIH Grant 5R01CA237118-02 and a Canadian Institutes of Health Research Fellowship (202012MFE-459170-174211). Development of the Biocultural Label Initiative has been supported by Catalyst Seeding funds for the project {\textquoteleft}Te Tuaµkiri o te Taµonga: Recognizing Indigenous Interests in Genetic Resources{\textquoteright} provided by the New Zealand Ministry of Business, Innovation and Employment and administered by the Royal Society Te Apaµrangi (19-UOW-008-CSG to M.L.H. and J.A.), leveraging the existing Local Contexts (https://localcontexts.org/) platform supported by the National Endowment for the Humanities (PR 234372-16 and PE 263553-19 to J.A.) and the Institute of Museums and Library Services in the United States (RE-246475-OLS-20 to J.A.), New York University Graduate School of Arts and Sciences, and the University of Waikato. Continuing infrastructure development is supported through the Equity for Indigenous Research and Innovation Co-ordinating Hub based at New York University and University of Waikato (https://www.enrich-hub.org/). The Biocultural Label Initiativeisextended through use cases, supported and refined by the Aotearoa Biocultural Label Working Group, Federation of Maµori Authorities Innovation (https://www.foma. org.nz/), Te Mana Rauranga (https://www.temanararaunga.maori.nz/), Genomics Aotearoa (https://www.genomics-aotearoa.org.nz/), Indigenous Design and Innovation Aotearoa (https://www.idia.nz/), the Genomics Observatories Metadata-base (https://geome-db.org/), the Ira Moana – Genes of the Sea – Project (https:// sites.massey.ac.nz/iramoana/), supported by Catalyst Seeding funds provided by the New Zealand Ministry of Business, Innovation and Employment and administered by the Royal Society Te Apaµrangi, 17-MAU-309-CSG to L.L.), and a Massey University Research Fund to L.L. L.L. is supported by a Rutherford Foundation Discovery Fellowship. J.G. and R.C.-D. are funded by the US National Cancer Institute through Grant R01 CA227118 (sulstonproject.org). M.Z.A. is funded by NIH Grant R01AI148788 and NSF CAREER 2046863. Publisher Copyright: {\textcopyright} 2022 National Academy of Sciences. All rights reserved.",
year = "2022",
month = jan,
day = "25",
doi = "10.1073/pnas.2115860119",
language = "English (US)",
volume = "119",
journal = "Proceedings of the National Academy of Sciences of the United States of America",
issn = "0027-8424",
publisher = "National Academy of Sciences",
number = "4",
}