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      Operationalizing the CARE and FAIR Principles for Indigenous data futures

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          Abstract

          As big data, open data, and open science advance to increase access to complex and large datasets for innovation, discovery, and decision-making, Indigenous Peoples’ rights to control and access their data within these data environments remain limited. Operationalizing the FAIR Principles for scientific data with the CARE Principles for Indigenous Data Governance enhances machine actionability and brings people and purpose to the fore to resolve Indigenous Peoples’ rights to and interests in their data across the data lifecycle.

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          The FAIR Guiding Principles for scientific data management and stewardship

          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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            The CARE Principles for Indigenous Data Governance

            Stephanie Russo Carroll, Ibrahim Garba, Óscar L. Figueroa-Rodríguez … (2020)
            Article 0 comments Cited 132 times – based on 0 reviews     Review now
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              Rights, interests and expectations: Indigenous perspectives on unrestricted access to genomic data

              Maui Hudson, Nanibaa' A Garrison, Rogena Sterling … (2020)
              Addressing Indigenous rights and interests in genetic resources has become increasingly challenging in an open science environment that promotes unrestricted access to genomic data. Although Indigenous experiences with genetic research have been shaped by a series of negative interactions, there is increasing recognition that equitable benefits can only be realized through greater participation of Indigenous communities. Issues of trust, accountability and equity underpin Indigenous critiques of genetic research and the sharing of genomic data. This Perspectives article highlights identified issues for Indigenous communities around the sharing of genomic data and suggests principles and actions that genomic researchers can adopt to recognize community rights and interests in data.
              Article 0 comments Cited 99 times – based on 0 reviews     Review now
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                Author and article information

                Contributors
                Stephanie Russo Carroll:
                ORCID: http://orcid.org/0000-0002-8996-8071
                stephaniecarroll@arizona.edu
                Journal
                Journal ID (nlm-ta): Sci Data
                Journal ID (iso-abbrev): Sci Data
                Title: Scientific Data
                Publisher: Nature Publishing Group UK (London )
                ISSN (Electronic): 2052-4463
                Publication date (Electronic): 16 April 2021
                Publication date PMC-release: 16 April 2021
                Publication date Collection: 2021
                Volume: 8
                Electronic Location Identifier: 108
                Affiliations
                [1 ]GRID grid.134563.6, ISNI 0000 0001 2168 186X, Native Nations Institute at the Udall Center for Studies in Public Policy, , University of Arizona, ; Tucson, Arizona USA
                [2 ]GRID grid.134563.6, ISNI 0000 0001 2168 186X, College of Public Health, , University of Arizona, ; Tucson, Arizona USA
                [3 ]Vision & Values, Brussels, Belgium
                [4 ]GRID grid.49481.30, ISNI 0000 0004 0408 3579, Te Kotahi Research Institute, , University of Waikato, ; Hamilton, New Zealand
                [5 ]GRID grid.503071.0, Australian Research Data Commons, Caulfield East, ; Victoria, Australia
                [6 ]GRID grid.298900.a, ISNI 0000 0004 0642 500X, Data Leadership, American Geophysical Union, ; Washington, D.C. USA
                Author information
                http://orcid.org/0000-0002-8996-8071
                http://orcid.org/0000-0002-2930-5401
                http://orcid.org/0000-0003-3880-4015
                http://orcid.org/0000-0001-5390-2719
                http://orcid.org/0000-0003-2926-8353
                Article
                Publisher ID: 892
                DOI: 10.1038/s41597-021-00892-0
                PMC ID: 8052430
                PubMed ID: 33863927
                SO-VID: 31bfd98a-b819-4127-a1ab-e70585e6d6eb
                Copyright © © The Author(s) 2021
                License:

                Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons license, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons license and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this license, visit http://creativecommons.org/licenses/by/4.0/.

                History
                Date received : 22 October 2020
                Date accepted : 18 March 2021
                Categories
                Subject: Comment
                Custom metadata
                issue-copyright-statement © The Author(s) 2021

                Keywords: ethics,policy,institutions
                Data availability:
                Keywords: ethics, policy, institutions

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