data collection

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Using Indigenous Standards to Implement the CARE Principles: Setting Expectations through Tribal Research Codes

Using Indigenous Standards to Implement the CARE Principles: Setting Expectations through Tribal Research Codes

Biomedical data are now organized in large-scale databases allowing researchers worldwide to access and utilize the data for new projects. As new technologies generate even larger amounts of data, data governance and data management are becoming pressing challenges. The FAIR principles (Findable,…

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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…

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The SEEDS of Indigenous population health data linkage

Globally, the ways that Indigenous data are collected, used, stored, shared, and analyzed are advancing through Indigenous data governance movements. However, these discussions do not always include the increasingly sensitive nature of linking Indigenous population health (IPH) data. During the…

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Indigenous Data Sovereignty and Policy

Indigenous Data Sovereignty and Policy

This book examines how Indigenous Peoples around the world are demanding greater data sovereignty, and challenging the ways in which governments have historically used Indigenous data to develop policies and programs. In the digital age, governments are increasingly dependent on data and data…

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Operationalizing the CARE Principles for Indigenous Data Governance” Webinar

Operationalizing the CARE Principles for Indigenous Data Governance Webinar

Presented by: Stephanie R. Carroll, Assistant Professor and Associate Director of the Native Nations Institute, University of ArizonaJane Anderson, Associate Professor, Department of Anthropology and Museum Studies, New York University Extractive and unethical research practices led to the…

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GIDA-RDA COVID-19 Guidelines for Data Sharing Respecting Indigenous Data Sovereignty

GIDA-RDA COVID-19 Guidelines for Data Sharing Respecting Indigenous Data Sovereignty

Indigenous Peoples around the globe have diverse narratives of resilience and adaptability; however, they are also acutely impacted by the negative social, economic, environmental and health outcomes of COVID-19 (UN Special Rapporteur on the rights of Indigenous Peoples, 2020). As such, it is vital…

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Miriam Jorgensen on New Policy Brief Dissecting Round 1 Allocations of CARES Act Tribal Funding

Miriam Jorgensen, Research Director with the Harvard Project and with Native Nations Institute at the University of Arizona, discusses the release of a new Harvard Project and Native Nations Institute policy brief dissecting the US Treasury Department's round 1 allocations of CARES Act funding for…

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Policy Brief: Indigenous Data Sovereignty in Arizona: Setting an Agenda

Policy Brief: Indigenous Data Sovereignty in Arizona: Setting an Agenda

Indigenous data sovereignty asserts the rights of Native nations and Indigenous Peoples to govern the collection, ownership, and application of their own data. Indigenous data sovereignty derives from tribes’ inherent right to govern their peoples, lands, and resources. In the United States and…

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CARE Principles for Indigenous Data Governance

CARE Principles for Indigenous Data Governance

Los Principios CREA para la Gobernanza de Datos Indigenas The increasing convergence of technology infrastructure and digital connectivity has raised the value of data across the globe. Whether existing knowledge is digitised or new data are ‘born digital’, the impact they have on decision-making,…

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Tribal Data Governance and Informational Privacy: Constructing "Indigenous Data Sovereignty"

Tribal Data Governance and Informational Privacy: Constructing "Indigenous Data Sovereignty"

There is a growing movement among Indigenous peoples to assert aright to “Indigenous data sovereignty,” and yet, the term “data sovereignty” is not widely understood. What does it mean to control the collection, useand management of information in an era of “Big Data,” in which digital technology…

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First Peoples Lost: Determining the State of Status First Nations Mortality in Canada Using Administrative Data

First Peoples Lost: Determining the State of Status First Nations Mortality in Canada Using Administrative Data

We present the most comprehensive set of estimates to date for status First Nations mortality in Canada. We use administrative data from Indigenous and Northern Affairs Canada to establish a set of stylized facts regarding status First Nations mortality rates. Between 2010 to 2013, the mortality…

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Indigenous Data Sovereignty Panel IDSOV Summit Arizona 2019

Native scholars working to advance the research on indigenous data sovereignty give their perspectives on the issues facing Native communities around data collection and date use. Dr. Jameson D. Lopez (Fort Yuma Quechan (Kwatsáan) Indian Tribe), Carmenlita Chief (Navajo Nation), and Dr. Tennille…

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Genomic Research Through an Indigenous Lens: Understanding the Expectations

Genomic Research Through an Indigenous Lens: Understanding the Expectations

Indigenous scholars are leading initiatives to improve access to genetic and genomic research and health care based on their unique cultural contexts and within sovereign-based governance models created and accepted by their peoples. In the past,Indigenous peoples’ engagement with genomic research…

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Good Data Practices for Indigenous Data Sovereignty

Good Data Practices for Indigenous Data Sovereignty

Indigenous Data Sovereignty (IDS) and Indigenous Data Governance are Indigenous-led movements and practices through which Indigenous peoples are setting their own visions for good data regarding data generated and collected by and about them. IDS movements and practices can be seen as a…

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Indigenous Data Sovereignty: Global Progression

On May 18, 2018 at the Native American and Indigenous Studies Association (NAISA) Conference in Los Angeles, six leading scholars discussed the landscape and global opportunities and challenges Indigenous peoples face in the growing Indigenous data sovereignty movement. The presentations provided…

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Policy Brief: Indigenous Data Sovereignty in the United States

Policy Brief: Indigenous Data Sovereignty in the United States

We live in the information age. Governments, industries, and organizations of all kinds are claiming a right to gather information on everything from our spending habits to our health records. Data has become a global currency, a valuable asset, and a source of power. Native nations are part of…

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Policy Brief: Data Governance for Native Nation Rebuilding

Policy Brief: Data Governance for Native Nation Rebuilding

Native nations in the United States are increasingly exercising Indigenous data sovereignty (ID-Sov)— the right of a nation to govern the collection, ownership, and application of its own data. While ID-Sov is the goal, data governance— the ownership, collection, control, analysis, and use of data…

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Data as a Strategic Resource: Self-determination, Governance, and the Data Challenge for Indigenous Nations in the United States

Data as a Strategic Resource: Self-determination, Governance , and the Data Challenge for Indigenous Nations in the United States

Data about Indigenous populations in the United States are inconsistent and irrelevant. Federal and state governments and researchers direct most collection, analysis, and use of data about U.S. Indigenous populations. Indigenous Peoples’ justified mistrust further complicates the collection and…

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Eileen Briggs: The Importance of Data and Community Engagement

Eileen Briggs is a citizen of the Cheyenne River Sioux Tribe and is the Executive Director of Cheyenne River Sioux Tribal Ventures. She is also the Principal Investigator on "Cheyenne River Voices Research" — a reservation-wide research project including a household survey of over 800 families that…

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Rudy Ortega, Jr.: Asserting Sovereignty and Self-Governance

Rudy Ortega, Jr., then Vice President and citizen of the Fernandeño Tataviam Band of Mission Indians, shares his experiences leading his community and engaging in Fernandeño Tataviam self-governance in spite of his nation not yet being a state or federally recognized tribal government.  Vice…