data governance

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Articulating‘free, prior and informed consent’ (FPIC) for engineered gene drives

Articulating ‘free, prior and informed consent’ (FPIC) for engineered gene drives

Recent statements by United Nations bodies point to free, prior and informed consent (FPIC) as a potential requirement in the development of engineered gene drive applications. As a concept developed in the context of protecting Indigenous rights to self-determination in land development scenarios…

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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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Policy Brief: Supporting Tribal Data Governance for Indigenous Community Climate Resilience

Policy Brief: Supporting Tribal Data Governance for Indigenous Community Climate Resilience

Tribal communities have the right to define, collect, protect, interpret, manage, and apply data in a way that respects Indigenous ethics, values, and relational responsibilities. These rights are critically relevant in the context of increasing climate impacts, where Indigenous communities need…

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Principles of Indigenous Data Governance

Principles of Indigenous Data Governance

Indigenous data, whether collected by national governments and institutions or gathered by Indigenous Peoples themselves, are integral for: decision-making; the exercise of collective rights to self-determination; the affirmation and application of Indigenous epistemologies; and fulfilling…

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Access and Management: Indigenous Perspectives on Genomic Data Sharing

Access and Management: Indigenous Perspectives on Genomic Data Sharing

As genomic researchers are encouraged to engage in broad genomic data shar­ing, American Indian/Alaska Native/Native Hawaiian (AI/AN/NH) leaders have raised questions about ownership of data and biospecimens and concerns over emerging challenges and potential threats to tribal sovereignty. Using a…

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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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Issues in Open Data: Indigenous Data Sovereignty

Open data in the context of Indigenous peoples is a double-edged sword. Open data is a site of tension for Indigenous peoples. Open data provides opportunities for sustainable development according to Indigenous aspirations, yet also sits at the nexus of current and historic data challenges as a…

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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…