data governance

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

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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 New York, the pandemic’s epicenter in the United States. As the virus spreads, Indigenous Peoples and nations in the United States face stark disparities in accessing resources to protect their communities—not the least of which relate to data. Examples of data dependency and data terrorism continue to reveal themselves during the pandemic. At the same time, Indigenous nations, scholars, and activists are amplifying Indigenous rights and interests in Covid-19-related data. By asserting Indigenous data sovereignty—the right of Indigenous Peoples and nations to govern data about their peoples, lands, and resources2—Indigenous Peoples are focused on tribal control of tribal data and demand visibility in the disaggregation of national, state, and county data to combat the pervasive erasure of Indigenous Peoples due to inadequate data efforts.

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Citation

Carroll, Stephanie Russo; Desi Rodriguez-Lonebear; Randall Akee; Annita Lucchesi; and Jennifer Rai Richards. Indigenous Data in the Covid-19 Pandemic: Straddling Erasure, Terrorism, and Sovereignty. June 11, 2020: Social Sciences Research Council.

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

Year

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, FPIC would need to be extended to apply to the context of ecological editing. Without an explicit framework of application, FPIC could be interpreted as a narrowly framed process of community consultation focused on the social implications of technology, and award little formal or advisory power indecision-making to Indigenous peoples and local communities. In this paper, we argue for an articulation of FPIC that attends to issues of transparency, iterative community-scale consent, and shared power through co-development among Indigenous peoples, local communities, researchers and technology developers. In realizing a comprehensive FPIC process, researchers and developers have an opportunity to incorporate enhanced participation and social guidance mechanisms into the design, development and implementation of engineered gene drive applications.

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Citation

George DR, Kuiken T, Delborne JA. 2019. Articulating ‘free, prior and informed consent’ (FPIC) for engineered gene drives. Proc. R. Soc. B286: 20191484. http://dx.doi.org/10.1098/rspb.2019.1484

Good Data Practices for Indigenous Data Sovereignty

Year

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 manifestation of Indigenous peoples' sovereignty more generally and as an alternative vision of data, centreing Indigenous peoples' rights to self-determination and autonomy. IDS also challenges conventional, western colonial data practices, which have been utilised against Indigenous peoples since colonisation and continue to be used against them in the digital environment. The authors set out the context for, and emergence of, IDS movements and provide an overview of IDS developments including the IDS networks such as Te Mana Raraunga, the Maori Data Sovereignty Network in Aotearoa/New Zealand.

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Citation

Lovett, Ray, Vanessa Lee, Tahu Kukutai, Stephanie Carroll Rainie, Jennifer Walker. “Good Data Practices for Indigenous Data Sovereignty,” in Angela Daly, Kate Devitt, & Monique Mann (Eds.), Good Data, Amsterdam: Institute of Network Cultures Inc. ISBN 978-94-92302-27-4. http://networkcultures.org/wp-content/uploads/2019/01/Good_Data.pdf

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

Year

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 research approach, we conducted 42 semi-structured interviews with Tribal leaders, clinicians, researchers, policy makers, and Tribal research review board members about their perspectives on ethical issues related to genetics research with Indigenous Peoples in the US. We report findings related to 1) considerations for Indigenous governance, 2) institutional relationship upholding sovereignty, 3) expectations for research approvals, and 4) agreements enacting Indigenous governance. Participants described concerns about different ways of exerting oversight, relationships and agreements between Indigenous Peoples and researchers, and gaps that need to be addressed to strengthen existing governance of genomic data. The results will ultimately guide policy-making and development of new strategies for Indigenous Peoples to enforce oversight in research to promote ethically and culturally appropriate research.

Topics

Science Seminar: Implementing the CARE Principles in Open Data Repositories

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Science Seminar: Implementing the CARE Principles in Open Data Repositories

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 more data-centric approach of the FAIR Principles (Findable, Accessible, Interoperable, and Reusable). This webinar is on the CARE Principles and how Indigenous governance and stewardship are recognized by the NSF's NEON Science in their collection of samples on Indigenous lands, air, water, and non-human relations.

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Citation

Stephanie Russo Carroll and Global Indigenous Data Alliance. "Science Seminar: Implementing the CARE Principles in Open Data Repositories". Feb. 14, 2023. Video. NEON Science. https://www.youtube.com/watch?v=xVJNd_jzQzg. Accessed Feb 26, 2023.

Transcripts for all videos are available by request. Please email us: nni@arizona.edu.

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Science Seminar: Implementing the CARE Principles in Open Data Repositories

Operationalizing the CARE and FAIR Principles for Indigenous data futures

Year

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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Citation

Carroll, S.R., Herczog, E., Hudson, M. et al. Operationalizing the CARE and FAIR Principles for Indigenous data futures. Sci Data 8, 108 (2021). https://doi.org/10.1038/s41597-021-00892-0

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

Year

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 suppression of COVID-19 data; due to historic and ongoing racism and exclusion, publicly available data can be both beneficial and harmful. Systemic policies related to genocide and racism, and historic and ongoing marginalization, have led to limitations in quality, quantity, access, and use of Indigenous Peoples' COVID-19 data. Governments, non-profits, researchers, and other institutions must collaborate with Indigenous Peoples on their own terms to improve access to and use of data for effective public health responses to COVID-19.

Native Nations
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Citation

Carroll, S.R., Akee, R., Chung, P., Cormack, D., Kukutai, T., Lovett, R., Suina, M., Rowe, R.K. (2021). Indigenous Peoples' Data During COVID-19: From External to Internal. Frontiers in Sociology. Vol. 6.  doi: 10.3389/fsoc.2021.617895    

Working with the CARE principles: operationalising Indigenous data governance

Year

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 protection of Indigenous rights and interests, and participation in data governance. Globally, there are more than 370 million Indigenous people, representing more than 5,000 distinct cultures, across over 90 countries.6 The recent focus on Indigenous data sovereignty has emerged as part of an intricate weaving together of the Indigenous cultural and intellectual property rights (ICIP) discourse with Indigenous research ethics, and the United Nations Declaration on the Rights of Indigenous Peoples (UNDRIP).

 

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Russo, Stephanie Carroll; Maui Hudson; Jarita Holbrook; Simeon Materechera,; Jane Anderson. Working with the CARE principles: operationalising Indigenous data governance November 9, 2020. Ada Lovelace Institute. Blog. Retreived from https://www.adalovelaceinstitute.org/blog/care-principles-operationalis…

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

Year
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 timely collaboration beyond borders.
 
The Research Data Alliance COVID-19 Working Group recently published a set of recommendations and guidelines on data sharing and related best practices for COVID-19 research. These guidelines include recommendations for researchers, policymakers, funders, publishers and infrastructure providers from the perspective of different domains (Clinical Medicine, Omics, Epidemiology, Social Sciences, Community Participation, Indigenous Peoples, Research Software, Legal and Ethical Considerations).
 
Several overarching themes have emerged from this document such as the need to balance the creation of data adherent to FAIR principles (findable, accessible, interoperable and reusable), with the need for quick data release; the use of trustworthy research data repositories; the use of well-annotated data with meaningful metadata; and practices of documenting methods and software. The resulting document marks an unprecedented cross-disciplinary, cross-sectoral, and cross-jurisdictional effort authored by over 160 experts from around the globe. This letter summarises key points of the Recommendations and Guidelines, highlights the relevant findings, shines a spotlight on the process, and suggests how these developments can be leveraged by the wider scientific community.
Native Nations
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Citation

Austin CC, Bernier A, Bezuidenhout L et al. Fostering global data sharing: highlighting the recommendations of the Research Data Alliance COVID-19 working group [version 1; peer review: 1 approved, 2 approved with reservations]. Wellcome Open Res 2020, 5:267 (https://doi.org/10.12688/wellcomeopenres.16378.1)

Indigenous Data Sovereignty: Activating Policy and Practice

Year

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; how they have approached policies and practices around Indigenous data, their challenges and successes.

Panelists

Christopher Cheney, Senior Counsel for Law Enforcement and Information Sharing , U.S. Department of Justice, Office of Tribal Justice

Kathy Etz, Director of Native American Programs, Program Director Epidemiology Program Branch, National Institute on Drug Abuse

Michael Pahn, Head of Archives and Digitization, National Museum of the American Indian, Smithsonian Institution

The overall goal is to bring communities together around shared needs to access research data; to discuss ethics of contribution and consent regarding access to Indigenous data; to explore operationalizing the CARE Principles for Indigenous Data Governance alongside the FAIR data principles for Indigenous data; and to share mechanisms and tools, such as the Traditional Knowledge (TK) and Biocultural (BC) labels and notices, that enable and support interactions between communities, individuals and institutions.

Program Committee

Randall Akee, Associate Professor, Department of Public Policy and American Indian Studies, UCLA

Jane Anderson, Associate Professor, Anthropology and Museum Studies, NYU

Stephanie Russo Carroll, Assistant Professor, Public Health & Associate Director, Native Nations Institute, University of Arizona

Maui Hudson, Associate Professor, Faculty of Maori and Indigenous Studies, University of Waikato

Laure Haak, Founder and CEO, Mighty Red Barn

Shawna Sadler, ORCID Engagement Manager, Americas & Caribbean

Helena Cousijn, Director, Community Engagement, DataCite

Katharina Ruckstuhl, Associate Dean - Māori. Manutaki Tuarua – Māori, University of Otago

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Citation

Akee, Randall; Anderson, Jane; Russo Carroll, Stephanie; Cousijn, Helena; Haak, Laurel; Hudson, Maui; et al. (2020): Indigenous Data Sovereignty: Activating Policy and Practice. ORCID. Presentation. https://doi.org/10.23640/07243.12844439.v1