data governance

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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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Post COVID-19 Implications for Genetic Diversity and Genomics Research & Innovation.png

Post COVID-19 Implications for Genetic Diversity and Genomics Research & Innovation: A Call for Governance and Research Capacity

At a time of significant technological change and digitization in the biological sciences, the COVID-19 pandemic has highlighted again the inequities in the research and innovation ecosystem. Based on a consultation with an internationally diverse group of stakeholders from multiple fields and…

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Operationalizing the CARE and FAIR Principles for Indigenous data futures

Operationalizing the CARE and FAIR Principles for Indigenous data futures

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…

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Indigenous Peoples' Data During COVID-19: From External to Internal

Indigenous Peoples' Data During COVID-19: From External to Internal

Global disease trackers quantifying the size, spread, and distribution of COVID-19 illustrate the power of data during the pandemic. Data are required for decision-making, planning, mitigation, surveillance, and monitoring the equity of responses. There are dual concerns about the availability and…

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Working with the CARE principles: operationalising Indigenous data governance

Working with the CARE principles: operationalising Indigenous data governance

Shifting the focus of data governance from consultation to values-based relationships to promote equitable Indigenous participation in data processes. Indigenous data sovereignty is becoming an increasingly relevant topic, as limited opportunities for benefit sharing have focused attention on the…

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Fostering global data sharing: highlighting the recommendations of the Research Data Alliance COVID-19 working group

The systemic challenges of the COVID-19 pandemic require cross-disciplinary collaboration in a global and timely fashion. Such collaboration needs open research practices and the sharing of research outputs, such as data and code, thereby facilitating research and research reproducibility and…

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Case Report Indigenous Sovereignty in a Pandemic Tribal Codes in the United States as Preparedness.png

Case Report: Indigenous Sovereignty in a Pandemic: Tribal Codes in the United States as Preparedness

Indigenous Peoples globally and in the United States have combatted and continue to face disease, genocide, and erasure, often the systemic result of settler colonial policies that seek to eradicate Indigenous communities. Many Native nations in the United States have asserted their inherent…

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Policy Brief: Native Nation Rebuilding for Tribal Research and Data Governance

Policy Brief: Native Nation Rebuilding for Tribal Research and Data Governance

Indigenous Peoples conducted research long before their interactions with European settlers. Whether through observation or practice, research in a non-western context was woven into Indigenous ways of knowing and being. It continues to inform Indigenous Knowledges of landscapes and natural…

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Indigenous Data Sovereignty- Activating Policy and Practice

Indigenous Data Sovereignty: Activating Policy and Practice

The Global Indigenous Data Alliance (GIDA), the US Indigenous Data Sovereignty Network (USIDSN), and ORCID invite you to join us for a webinar about Global Indigenous Data Alliance Policy Interaction. We have asked three panelists to speak about their experiences with Indigenous Data Sovereignty;…

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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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Indigenous Data in the Covid-19 Pandemic: Straddling Erasure, Terrorism, and Sovereignty

Indigenous Data in the Covid-19 Pandemic: Straddling Erasure, Terrorism, and Sovereignty

On April 10, 2020, Covid-19 case rates on tribal lands were more than four times the rate in the United States.1 Indigenous Peoples across the country continue to be disproportionately impacted by the coronavirus. As of May 18, 2020, the Navajo Nation has the highest Covid-19 case rates surpassing…

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Indigenous Data Sovereignty: The CARE Principles and the Biocultural Labels Initiative

  The NYU Alliance for Public Interest Technology Alliance is a dynamic and multidisciplinary group of NYU faculty who are experts on the responsible and ethical creation, use and governance of technology in society. The Alliance is a provostial initiative that connects numerous NYU hubs and…

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

Articulating ‘free, prior and informedconsent’ (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…