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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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.

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Most cited references 61

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Mark D Wilkinson, Michel Dumontier, IJsbrand Jan Aalbersberg … (2016)

There is an urgent need to improve the infrastructure supporting the reuse of scholarly data. A diverse set of stakeholders—representing academia, industry, funding agencies, and scholarly publishers—have come together to design and jointly endorse a concise and measureable set of principles that we refer to as the FAIR Data Principles. The intent is that these may act as a guideline for those wishing to enhance the reusability of their data holdings. Distinct from peer initiatives that focus on the human scholar, the FAIR Principles put specific emphasis on enhancing the ability of machines to automatically find and use the data, in addition to supporting its reuse by individuals. This Comment is the first formal publication of the FAIR Principles, and includes the rationale behind them, and some exemplar implementations in the community.

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Erich D. Jarvis, Gene Robinson, Warren E Johnson … (2018)

Increasing our understanding of Earth's biodiversity and responsibly stewarding its resources are among the most crucial scientific and social challenges of the new millennium. These challenges require fundamental new knowledge of the organization, evolution, functions, and interactions among millions of the planet's organisms. Herein, we present a perspective on the Earth BioGenome Project (EBP), a moonshot for biology that aims to sequence, catalog, and characterize the genomes of all of Earth's eukaryotic biodiversity over a period of 10 years. The outcomes of the EBP will inform a broad range of major issues facing humanity, such as the impact of climate change on biodiversity, the conservation of endangered species and ecosystems, and the preservation and enhancement of ecosystem services. We describe hurdles that the project faces, including data-sharing policies that ensure a permanent, freely available resource for future scientific discovery while respecting access and benefit sharing guidelines of the Nagoya Protocol. We also describe scientific and organizational challenges in executing such an ambitious project, and the structure proposed to achieve the project's goals. The far-reaching potential benefits of creating an open digital repository of genomic information for life on Earth can be realized only by a coordinated international effort.

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Author and article information

Journal

Journal ID (nlm-ta): Proc Natl Acad Sci U S A

Journal ID (iso-abbrev): Proc Natl Acad Sci U S A

Journal ID (hwp): pnas

Journal ID (publisher-id): PNAS

Title: Proceedings of the National Academy of Sciences of the United States of America

Publisher: National Academy of Sciences

ISSN (Print): 0027-8424

ISSN (Electronic): 1091-6490

Publication date (Electronic): 18 January 2022

Publication date (Print): 25 January 2022

Publication date PMC-release: 18 January 2022

Volume: 119

Issue: 4

Electronic Location Identifier: e2115860119

Affiliations

[1] ^aGenome Informatics Section, Computational and Statistical Branch, National Human Genome Research Institute, National Institutes of Health , Bethesda, MD 20892;

[2] ^bEngelberg Center for Innovation Law and Policy, New York University School of Law , New York, NY 10012;

[3] ^cSchool of Natural and Computational Sciences, Massey University , 0745 Auckland, New Zealand;

[4] ^dTe Kotahi Research Institute, University of Waikato , 3216 Hamilton, New Zealand;

[5] ^eDepartment of Microbiology, The Ohio State University , Columbus, OH 43210;

[6] ^fDepartment of Microbial Infection and Immunity, The Ohio State University , Columbus, OH 43210;

[7] ^gGenomics Aotearoa, University of Otago , 9016 Dunedin, New Zealand;

[8] ^hSchool for the Future of Innovation in Society, Arizona State University , Tempe, AZ 85281;

[9] ⁱThe National Centre of Indigenous Genomics, The Australian National University , Canberra, ACT 0200, Australia

Author notes

¹To whom correspondence may be addressed. Email: ann.mccartney@ 123456nih.gov .

Edited by Pamela Soltis, Florida Museum of Natural History, University of Florida, Gainesville, FL; received September 3, 2021; accepted November 23, 2021

Author contributions: A.M.M.C., J.A., L.L., M.L.H., M.Z.A., B.T., J.G., R.C.-D., and H.R.P. designed research; A.M.M.C. and A.M.P. wrote the paper; and J.A., L.L., M.L.H., M.Z.A., B.T., J.G., R.C.-D., and H.R.P. contributed to drafting text.