The CARE Principles for Indigenous Data Governance
Stephanie Russo Carroll,Ibrahim Garba,Oscar L. Figueroa-Rodríguez,Jarita Holbrook,Raymond Lovett,Simeon A. Materechera,Mark A. Parsons,Kay Raseroka,Desi Rodriguez-Lonebear,Robyn Rowe,Rodrigo Sara,Jennifer D. Walker,Jane Anderson,Maui Hudson +13 more
TLDR
The goal is that stewards and other users of Indigenous data will ‘Be FAIR and CARE’ and the Principles complement the existing data-centric approach represented in the ‘FAIR Guiding Principles for scientific data management and stewardship’ (Findable, Accessible, Interoperable, Reusable).Abstract:
Concerns about secondary use of data and limited opportunities for benefit-sharing have focused attention on the tension that Indigenous communities feel between (1) protecting Indigenous rights and interests in Indigenous data (including traditional knowledges) and (2) supporting open data, machine learning, broad data sharing, and big data initiatives. The International Indigenous Data Sovereignty Interest Group (within the Research Data Alliance) is a network of nation-state based Indigenous data sovereignty networks and individuals that developed the ‘CARE Principles for Indigenous Data Governance’ (Collective Benefit, Authority to Control, Responsibility, and Ethics) in consultation with Indigenous Peoples, scholars, non-profit organizations, and governments. The CARE Principles are people– and purpose-oriented, reflecting the crucial role of data in advancing innovation, governance, and self-determination among Indigenous Peoples. The Principles complement the existing data-centric approach represented in the ‘FAIR Guiding Principles for scientific data management and stewardship’ (Findable, Accessible, Interoperable, Reusable). The CARE Principles build upon earlier work by the Te Mana Raraunga Maori Data Sovereignty Network, US Indigenous Data Sovereignty Network, Maiam nayri Wingara Aboriginal and Torres Strait Islander Data Sovereignty Collective, and numerous Indigenous Peoples, nations, and communities. The goal is that stewards and other users of Indigenous data will ‘Be FAIR and CARE.’ In this first formal publication of the CARE Principles, we articulate their rationale, describe their relation to the FAIR Principles, and present examples of their application.read more
Citations
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Dissertation
United nations declaration on the rights of indigenous peoples: relevansi dan urgensinya terkait pembentukan regulasi mengenai jaminan perlindungan hak masyarakat adat di indonesia
TL;DR: Kemudian as discussed by the authors mencetuskan Deklarasi Hak Masyarakat Adat pada 13 September 2007 setelah proses negosiasi panjang selama puluhan tahun.
Journal ArticleDOI
Operationalizing the CARE and FAIR Principles for Indigenous data futures.
TL;DR: The CARE Principles for Indigenous Data Governance (CARE) as discussed by the authors is a set of principles for data governance in big data, open data, and open science, which is based on FAIR principles for scientific data.
Journal ArticleDOI
Increasing Black, Indigenous and People of Color participation in clinical trials through community engagement and recruitment goal establishment.
Michele P. Andrasik,Gail Broder,Stephaun E. Wallace,Richa Chaturvedi,Nelson L. Michael,Sally Bock,Chris Beyrer,Linda Oseso,Jasmin Aina,Jonathan Lucas,David R. Wilson,James G. Kublin,George A. Mensah +12 more
TL;DR: In the U.S. Government-funded COVID-19 Prevention Network (CoVPN)-sponsored vaccine efficacy trials, only 47% of the participants were BIPOC as mentioned in this paper.
Journal ArticleDOI
Opportunities and challenges of macrogenetic studies
Deborah M. Leigh,Charles B. van Rees,Katie L. Millette,Martin F. Breed,Martin F. Breed,Chloé Schmidt,Laura D. Bertola,Brian K. Hand,Margaret E. Hunter,Margaret E. Hunter,Evelyn L. Jensen,Francine Kershaw,Libby Liggins,Gordon Luikart,Stéphanie Manel,Joachim Mergeay,Joshua M. Miller,Gernot Segelbacher,Gernot Segelbacher,Sean Hoban,Sean Hoban,Ivan Paz-Vinas +21 more
TL;DR: The rapidly emerging field of macrogenetics focuses on analysing publicly accessible genetic datasets from thousands of species to explore large-scale patterns and predictors of intraspecific genetic variation as mentioned in this paper.
Journal ArticleDOI
Global genetic diversity status and trends: towards a suite of Essential Biodiversity Variables (EBVs) for genetic composition
Sean Hoban,Frederick I. Archer,Laura D. Bertola,Jason G. Bragg,Martin F. Breed,Michael William Bruford,Melinda A. Coleman,Robert Ekblom,W. Chris Funk,Catherine E. Grueber,Brian K. Hand,Rodolfo Jaffé,Evelyn L. Jensen,Jeremy S. Johnson,Francine Kershaw,Libby Liggins,Anna J. MacDonald,Joachim Mergeay,Frank E. Muller-Karger,David O'Brien,Ivan Paz-Vinas,Kevin M. Potter,Orly Razgour,Cristiano Vernesi,Margaret E. Hunter +24 more
TL;DR: In this paper , the feasibility of implementing Genetic Composition EBVs (Genetic EBVs), which are metrics of within-species genetic variation, is assessed. And the challenges of aggregation, standardization, and costs of operationalizing the Genetic EBVs, as well as future directions and opportunities to maximize their uptake globally in research and policy are discussed.
References
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Journal ArticleDOI
The FAIR Guiding Principles for scientific data management and stewardship
Mark Wilkinson,Michel Dumontier,IJsbrand Jan Aalbersberg,Gabrielle Appleton,Myles Axton,Arie Baak,Niklas Blomberg,Jan-Willem Boiten,Luiz Olavo Bonino da Silva Santos,Philip E. Bourne,Jildau Bouwman,Anthony J. Brookes,Timothy Clark,Mercè Crosas,Ingrid Dillo,Olivier G. Dumon,Scott C. Edmunds,Chris T. Evelo,Richard Finkers,Alejandra Gonzalez-Beltran,Alasdair J. G. Gray,Paul Groth,Carole Goble,Jeffrey S. Grethe,Jaap Heringa,Peter A C 't Hoen,Rob Hooft,Tobias Kuhn,Ruben Kok,Joost N. Kok,Scott J. Lusher,Maryann E. Martone,Albert Mons,Abel L. Packer,Bengt Persson,Philippe Rocca-Serra,Marco Roos,Rene van Schaik,Susanna-Assunta Sansone,Erik Anthony Schultes,Thierry Sengstag,Ted Slater,George Strawn,Morris A. Swertz,Mark Thompson,Johan van der Lei,Erik M. van Mulligen,Jan Velterop,Andra Waagmeester,Peter Wittenburg,Katherine Wolstencroft,Jun Zhao,Barend Mons,Barend Mons +53 more
TL;DR: The FAIR Data Principles as mentioned in this paper are a set of data reuse principles that focus on enhancing the ability of machines to automatically find and use the data, in addition to supporting its reuse by individuals.
Book
Research Is Ceremony: Indigenous Research Methods
TL;DR: The authors describes a research paradigm shared by Indigenous scholars in Canada and Australia, and demonstrates how this paradigm can be put into practice, and how to make careful choices in our selection of topics, methods of data collection, forms of analysis and finally in the way we present information.
Journal ArticleDOI
Decolonizing Methodologies: Research and Indigenous Peoples
TL;DR: A second edition of Professor Linda Smith's impressively well-received methodology text has now been published as discussed by the authors, which is the most widely used methodology text in the world for the first time.
Journal ArticleDOI
The Nagoya Protocol on Access to Genetic Resources and the Fair and Equitable Sharing of Benefits Arising from their Utilization to the Convention on Biological Diversity
Matthias Buck,Clare Hamilton +1 more
TL;DR: The main challenges in the final negotiations are identified and the framework for access and benefit-sharing established by the Nagoya Protocol both for genetic resources and for traditional knowledge associated with genetic resources is explained.
Dissertation
United nations declaration on the rights of indigenous peoples: relevansi dan urgensinya terkait pembentukan regulasi mengenai jaminan perlindungan hak masyarakat adat di indonesia
TL;DR: Kemudian as discussed by the authors mencetuskan Deklarasi Hak Masyarakat Adat pada 13 September 2007 setelah proses negosiasi panjang selama puluhan tahun.
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