data governance

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Indigenous Peoples Breathing Data Back | Stephanie Russo Carroll | TEDxUArizona

Indigenous peoples have been successfully working with data for millennia, and Dr. Stephanie Russo Carroll posits a way to bring “databack” into relationship with our messy, 3D, colonized world at TEDxUArizona. Discover the power of Indigenous Data Sovereignty and its role in reconnecting…

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Frontiers

Genetic Research with Indigenous Peoples: Perspectives on Governance and Oversight in the US

Indigenous Peoples are increasingly exerting governance and oversight over genomic research with citizens of their nations, raising questions about how best to enforce research regulation between American Indian, Alaska Native, and Native Hawaiian peoples and researchers. Using a community-engaged…

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Frontiers

Indigenous Peoples and research: self-determination in research governance

Indigenous Peoples are reimagining their relationship with research and researchers through greater self-determination and involvement in research governance. The emerging discourse around Indigenous Data Sovereignty has provoked discussions about decolonizing data practices and highlighted the…

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Applying the ‘CARE Principles for Indigenous Data Governance’ to ecology and biodiversity research

Applying the ‘CARE Principles for Indigenous Data Governance’ to ecology and biodiversity research

Indigenous Peoples are increasingly being sought out for research partnerships that incorporate Indigenous Knowledges into ecology research. In such research partnerships, it is essential that Indigenous data are cared for ethically and responsibly. Here we outline how the ‘CARE Principles for…

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Frontiers

Indigenous Peoples' Rights in Data: a contribution toward Indigenous Research Sovereignty

Indigenous Peoples' right to sovereignty forms the foundation for advocacy and actions toward greater Indigenous self-determination and control across a range of domains that impact Indigenous Peoples' communities and cultures. Declarations for sovereignty are rising throughout Indigenous…

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Science Seminar: Implementing the CARE Principles in Open Data Repositories

Image The people and purpose-oriented CARE Principles (Collective Benefit, Authority to Control, Responsibility, and Ethics) reflect the crucial role of data in advancing innovation, governance, and self-determination among Indigenous Peoples. The CARE Principles complement and extend the…

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

Extending the CARE Principles from tribal research policies to benefit sharing in genomic research

Indigenous Peoples have historically been targets of extractive research that has led to little to no benefit. In genomics, such research not only exposes communities to harms and risks of misuse, but also deprives such communities of potential benefits. Tribes in the US have been exercising their…

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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…