The Indigenous World 2022: Indigenous Data Sovereignty

Indigenous Peoples have always been “data warriors”.[1] Their ancient traditions recorded and protected information and knowledge through art, carving, song, chants and other practices. Deliberate efforts to expunge these knowledge systems were part and parcel of colonisation, along with State-imposed practices of counting and classifying Indigenous populations. As a result, Indigenous Peoples often encounter severe data deficits when trying to access high-quality, culturally relevant data with which to pursue our goals. Meanwhile there is an abundance of data that reflects and serves government interests on Indigenous Peoples and their lands.

The concept of Indigenous Data Sovereignty is a relatively recent one, with the first major publication on the topic only appearing in 2016.[2] Indigenous Data Sovereignty is defined as the right of Indigenous Peoples to own, control, access and possess data that derive from them, and which pertain to Nation membership, knowledge systems, customs or territories.[3],[4],[5] Indigenous Data Sovereignty is supported by Indigenous Peoples’ inherent rights to self-determination and governance over Indigenous Peoples, territories and resources as affirmed in the United Nations Declaration on the Rights of Indigenous Peoples (UNDRIP), as well as in domestic treaties. Indigenous Data Sovereignty recognises that data is a strategic resource and provides a framework for the ethical use of data to advance collective Indigenous well-being and self-determination.[6],[7]

In practice, Indigenous Data Sovereignty means that Indigenous Peoples need to be the decision-makers in how data about them are used. Given that most Indigenous data is not in the possession of Indigenous Peoples, Indigenous data governance is seen as a key lever for addressing Indigenous Data Sovereignty. Indigenous data governance harnesses Indigenous Peoples’ values, rights and interests to guide decision-making about how their data are collected, accessed, stored and used.[8] Enacting Indigenous data governance results in Indigenous control of Indigenous data through both internal Indigenous community data governance policies and practices, and external stewardship of Indigenous data via mechanisms and frameworks that reflect Indigenous values. The COVID-19 pandemic shows that there are still no robust governance systems, ethical frameworks or regulatory mechanisms in place to protect Indigenous people and their data.


My Great Grandmother once wrote a poem called ‘Trust not the river’. In it she speaks of how a river ‘beguilingly tranquil, glossily calm’ can mask its dark undertows beneath a seemingly serene surface. She urges that we ‘be wary and watch the way that it flows, It can burst through its banks and rampaging goes’. As an Indigenous woman working in the field of data sovereignty, it can sometimes feel like I am being pulled around by the violent undertow of a serene looking river. Rivers of information, overflowing pulling me under and spitting me back out, every time slightly more dishevelled, more disoriented, with less firm ground to find my feet. At the surface level though, there is increasing enthusiasm from research institutions and policy sectors to align their data practices with Indigenous Data Sovereignty - whatever that looks like. COVID-19 has exacerbated these issues – creating a current so strong, the riverbed is being pulled away – where I could once touch the ground, now there is nothing. [9]

Introduction

The Indigenous Data Sovereignty movement continues to make exponential waves in data spaces around the globe as people pause to reflect on the many historic (and ongoing) misuses of Indigenous-derived information.[10] The [re]telling of stories across generations has powerful transformative potential[11] and is, in itself, an act of Indigenous Data Sovereignty. For instance, a poem about a river offers insight into the ways that Indigenous Data Sovereignty scholars, advocates and activists are increasingly pulled in different, often conflicting, directions – some of which support the advancement of Indigenous Data Sovereignty and others which keep them in a continual space of responding to colonial structures.[12]

Through our grandmothers’ wisdom, Indigenous women can reflect on the goals and politics of the past, present and future of the data space while remembering that “Indigenous Peoples have always been ‘data warriors’.”[13],[14],[15],[16] The spirit of shared goals and the value of Indigenous women’s collective knowledge[17] is aimed at disrupting colonial thinking. During the continuing global pandemic, throughout 2021, sharing a mutual understanding of the challenges that come with navigating the added responsibilities of our interconnected social, political, cultural and moral ethics and realities as Indigenous, women and mothers has been critical.[18]

The Global Indigenous Data Alliance or GIDA[19] brings together international organisations and individuals who share similar, overarching goals of advancing Indigenous-led data rights and interests in line with equity, justice and decolonisation, which are integral to achieving Indigenous Data Sovereignty. Indigenous data consist of any information in any format that affects Indigenous lives at the individual or collective level, including data that are born digital and traditional knowledges and information that can be or have been digitised.[20], [21] The ways in which all data are collected, stored, used, connected and analysed are driving policy change and innovation.[22],[23] International human rights documents such as the United Nations Declaration on the Rights of Indigenous Peoples (UNDRIP) reflect the inherent rights of Indigenous Peoples and Nations to sovereignty over information, and are used as a tool to advance Indigenous-led data priorities.[24],[25],[26]

Ongoing impact of COVID-19

COVID-19 continues to illuminate how the lived health experiences of Indigenous Peoples, and particularly Indigenous women, are rooted in racism, oppression,[27],[28] land dispossession and displacement.[29] In the 2021 Indigenous World update on Indigenous Data Sovereignty, COVID-19 was described as having an exacerbating impact on existing inequities and inequalities experienced by Indigenous communities.[30] Limited access to quality healthcare, higher infection, and fatality rates,[31] as well as the differential impacts of economic and social upheaval continue to be key issues for racialised people,[32],[33],[34] including Indigenous Peoples during the pandemic.[35],[36],[37] The call remains strong from Indigenous communities for better, more reliable, and disaggregated data to be made available.[38],[39],[40] Importantly, there is a rapidly expanding data-glut whereby information continues to be collected but the quality of the data is ineffective for Indigenous Nations, and there is still no significant shift in making useful data available at the community level.[41],[42]

Indigenous women are respected and highly regarded within Nations as leaders, educators, healers, and keepers of traditional knowledges, languages, cultures and history.[43] Colonialism works to suppress and control the innate strength of our Nations by targeting Indigenous women and gender-diverse people, including two-spirit, lesbian, gay, bisexual, transgender, queer, questioning, intersex, asexual plus people (2SLGBTQQIA+).[44] Indigenous women and gender-diverse people are key users of health systems and large creators of health data, and yet they continue to be met with gender-biased, racist and culturally insensitive policies and systems.[45],[46],[47] Data that are collected and analysed on systemically marginalised and racialised groups share the same messages of oppression so consistently that it reshapes our realities and weakens our abilities to overcome hardships.[48] The pandemic is fuelling systemic marginalisation and increasing disruption of Indigenous social, economic, political, cultural, linguistic and geographical experiences, all of which impact how well we stave off illness.[49],[50]

Of significant concern is that COVID-19 is a disease that has expanded and mutated at an accelerated pace, requiring governments globally to make decisions in rapid response, based on the information they have at hand. The pandemic has continued to burden and overwhelm health systems and this is having major impacts on the quality and accuracy of data that is being collected.[51] As a result, Indigenous Nations and government responses to the pandemic have the potential to exacerbate harm and may fail to respond to the unique needs of individual people and Nations.

In situations of crisis, generally accepted legal conventions such as the sanctity of individual privacy are often side-lined in favour of public health and safety.[52],[53] For Indigenous Peoples though, even under ordinary circumstances, the sanctity of individual privacy is often a fallacy. Any models developed under conditions of “scandal and response” have historically not served systemically marginalised populations. Consider for example, the development of institutional ethics, where the processes that have been developed to protect people from harm in research have not always protected people equally or equitably. While COVID-19 is not a “scandal” per se, it is a crisis that has necessitated a prompt response. Unfortunately, what the pandemic has highlighted is that there are still no robust governance systems, ethical frameworks or regulatory mechanisms in place to protect Indigenous Peoples and their data.[54]

Indigenous-led data governance movements

The ability to meet in person in 2021 to discuss and advance Indigenous Data Sovereignty movements was severely limited as the COVID-19 pandemic continued. Despite a lack of in-place connection, there has been a growing global recognition of Indigenous data governance and its role as a contributor to informing equitable and inclusive data governance. Ongoing pandemic-related data injustices have been a major contributor to this awareness. Increasingly, an awareness of the experiences of Indigenous women during the pandemic has also contributed to the growth of the movement both socially and politically.[55]

Importantly, Indigenous Peoples, scholars, journalists and activists have used this time to re-assess progress made up until this point. Despite the progress in recognition of Indigenous rights and interests, racialised and gender-biased data continue to be collected and used at unprecedented (and growing) rates “without sufficiently considering how the different structures of inequality intersect”.[56] Capital-driven technological advancements in healthcare are leading to an increase in automation and algorithm usage that claims to improve and predict population health. However, health systems are not immune to the use of artificial intelligence for the purposes of racist surveillance which, as a result of the data and social contexts in which machines are taught, are inherently wrought with racial and gender bias.[57],[58],[59] While Indigenous Peoples are among those who receive greater exposure within data (arguably due to surveillance), they also continue to receive less effective care and are disproportionally represented in COVID-19 mortality rates on a global scale.[60],[61],[62]

Ongoing limitations to Indigenous equity

There is a global movement aimed at equity[63] and yet there remains an apparent failure to acknowledge the limitations of true and genuine equity in a world designed exclusively for the benefit of some and not all. Over the course of 2021, the data continued to highlight that Indigenous women and gender-diverse people are dying from hunger, disease and COVID-19. Indigenous women and girls continue to go missing and are being murdered,[64] and mass burials of children are being uncovered in Canada and the United States at the sites of old residential schools. 2021 saw a continued rise in activist movements and calls for justice, with Indigenous women and People of Colour leading much of this awareness raising.[65],[66] 2021 has confirmed the need for intersectional approaches to data collection, analyses and reporting in order to design effective policy responses “that mitigate, instead of increase, the potential unequal effect of this pandemic”.[67]

Indigenous Data Sovereignty and open data

The full implementation of Indigenous Data Sovereignty is hampered when larger organisations have agendas that contradict Indigenous-led data science. For instance, data spaces that hold Indigenous data should include protections that limit the misuse of Indigenous-derived information by non-indigenous individuals. As a result, big data, open data and open science remain objectives of many data organisations and governments while continuing to challenge Indigenous Data Sovereignty in action.[68], [69] Too often missing from the open science-driven discussion about big data is a deeper understanding that data are not objective nor are they equitable. This is what Maggie Walter refers to as the Indigenous data paradox, “lots of data about us that are not useful to us (or anybody else), and little or no data for us or by us”.[70] The pandemic has further exacerbated this data paradox. Increasingly, genomic data are also being discussed in the open data science space, which is cause for concern for many.[71],[72]

Challenges and mechanisms for change

Indigenous Peoples have been calling for equity, and fighting discrimination, harassment and exploitation for centuries. Complex and rapidly expanding digital ecosystems are having far-reaching ethical, legal, medical and policy implications.[73],[74],[75] Indigenous Peoples and advocacy groups continue to guide data-driven policy development and increasing awareness for Indigenous-led data governance approaches.

Government-initiated COVID-19 responses have led to the expansion of systems of surveillance and algorithmic profiling in health.[76] While the world moves towards models aimed at equity, there is a growing need to recognise the unique and distinct experiences of Indigenous women and gender-diverse people, including 2SLGBTQQIA+ people. There is an even more growing need to explore and understand the implications of equity in a world designed exclusively for the benefit of some and not all. This idea extends to spaces where data is being yielded as a tool for equity. Reflecting on the wisdom of Indigenous women, Elders, grandmothers and ancestors, and on the role of stories and ceremony, it is increasingly clear that deeper considerations for the advancement of Indigenous-led data sovereignty are needed. 2021 has again raised the question of whether increased health data, hastily gathered without respect for Indigenous Data Sovereignty and Governance under the shadow of COVID-19, have the potential to mitigate harm, improve Nation governance, or lead to equity, and at what cost?

Robyn K. Rowe (Anishinaabe of Teme Augama Anishnabai | Deep Water by the Shore People) is the chair of the Indigenous Data Team at Health Data Research Network, Canada, a staff scientist at ICES Centre (previously the Institute for Clinical Evaluative Sciences), and an Executive Member of the Global Indigenous Data Alliance. Email: This email address is being protected from spambots. You need JavaScript enabled to view it.

Kiri West (Ngāti Marutūahu) is a lecturer in Indigenous Communications at Waipapa Taumata Rau (University of Auckland) and a member of Te Pokapu in the Te Mana Raraunga Māori Data Sovereignty Network.

Stephanie Russo Carroll (Ahtna-Native Village of Kluti-Kaah) is an Assistant Professor at the University of Arizona, USA, Chair of the Global Indigenous Data Alliance, and a co-founder of the United States Indigenous Data Sovereignty Network.

 

This article is part of the 36th edition of The Indigenous World, a yearly overview produced by IWGIA that serves to document and report on the developments Indigenous Peoples have experienced. Find The Indigenous World 2022 in full here

 

Notes and references

[1] Rodriguez-Lonebear, Desi. “Building a data revolution in Indian Country”. In Indigenous data sovereignty: Toward an agenda, edited by Tahu Kukutai & John Taylor, 253-72. Canberra: ANU Press, 2016.

[2] Kukutai, Tahu, and John Taylor (Eds). Indigenous data sovereignty: Toward an agenda. Canberra: ANU Press, 2016.

[3] First Nations Information Governance Centre. “Pathways to First Nations’ data and information sovereignty.” In Indigenous data sovereignty: Toward an agenda, edited by Tahu Kukutai & John Taylor, 139-55. Canberra: ANU Press, 2016.

[4] Kukutai and Taylor, 2016. Op Cit.

[5] Snipp, Matthew. “What does data sovereignty imply: what does it look like?” In Indigenous data sovereignty: Toward an agenda, edited by Tahu Kukutai & John Taylor, 39-55. Canberra: ANU Press, 2016.

[6] First Nations Information Governance Centre, 2016. Op Cit.

[7] Hudson, Maui, et al. “Tribal data sovereignty: Whakatōhea rights and interests”. In Indigenous data sovereignty: Toward an agenda, edited by Tahu Kukutai & John Taylor, 157-78. Canberra: ANU Press, 2016.

[8] Walter, Maggie, et al. “Indigenous Data Sovereignty Briefing Paper 1”. Miaim nayri Wingara Data Sovereignty Group and the Australian Indigenous Governance Institute, 2018. We acknowledge the pioneering contribution of John Taylor.

[9] Rowe, Robyn, Kiri West, Stephanie Russo Carol. (2022) “Forthcoming”.

[10] Carroll, Stephanie, Tahu Kukutai, and Maggie Walter. “The Indigenous World 2021: Indigenous Data Sovereignty”. International Work Group for Indigenous Affairs, 2021. https://www.iwgia.org/en/ip-i-iw/4268-iw-2021-indigenous-data-sovereignty.html

[11] Archibald, J. A. (2008). Indigenous storywork: Educating the heart, mind, body, and spirit. UBC Press.

[12] Rowe, Robyn, Kiri West, Stephanie Russo Carol. (2022) “Forthcoming”. Op. Cit.

[13] Carroll, Stephanie, Tahu Kukutai, and Maggie Walter, 2021. Op. Cit.

[14] Rowe, Robyn, Kiri West, Stephanie Russo Carol. (2022) “Forthcoming”. Op. Cit.

[15] British Columbia’s Office of the Human Rights Commissioner. “Disaggregated demographic data collection in British Columbia: The grandmother perspective”. 2020. https://bchumanrights.ca/wp-content/uploads/BCOHRC_Sept2020_Disaggregated-Data-Report_FINAL.pdf

[16] First Nations Information Governance Centre, 2016. Op Cit.

[17] Windchief, Sweeney, and Timothy San Pedro. Applying Indigenous research methods. New York, United States: Routledge, 2019, p.25.

[18] Castañeda, María Cecilia Arriaza. “Vulnerability and Resilience of Indigenous Women through the COVID–19 Pandemic”. (2020).

[19] See: The Global Indigenous Data Alliance or GIDA, https://www.gida-global.org/

[20] United States Indigenous Data Sovereignty Network. Principles of Indigenous Data Governance, 2020.https://nnigovernance.arizona.edu/sites/default/files/resources/US%20Indigenous%20Data%20Sov%20Principles%20Working%20File.pdf

[21] Carroll, S.R., Rodriguez-Lonebear, D., & Martinez, A. (2019b). Indigenous data governance: Strategies from United States Native Nations. Data Science Journal, 18(31), 1-15. http://doi.org/10.5334/dsj-2019-031

[22] See: Maiam Nayri Wingaram https://www.maiamnayriwingara.org/about-us

[23] Walter, Maggie. “The voice of indigenous data: beyond the markers of disadvantage”. Griffith Review 60 (2018): 256-263. https://www.griffithreview.com/ articles/voice-Indigenous-data-beyond-disadvantage/

[24] First Nations Information Governance Centre, 2016. Op Cit.

[25] Research Data Alliance International Indigenous Data Sovereignty Interest Group. September 2019. “CARE Principles for Indigenous Data Governance”. The Global Indigenous Data Alliance. www.gida-global.org.

[26] Hudson, Maui, et al. “Tribal data sovereignty: Whakatōhea rights and interests”. In Indigenous data sovereignty: Toward an agenda, edited by Tahu Kukutai & John Taylor, 157-78. Canberra: ANU Press, 2016.

[27] Violence Against Women Learning Network. “More Exposed & Less Protected” in Canada: Racial Inequality as Systemic Violence During COVID-19”. https://www.vawlearningnetwork.ca/docs/Systemic-Racism-Covid-19-Backgrounder.pdf

[28] Cormack, Donna and Tahu Kukutai. “Pandemic paternalism: A reflection on Indigenous data from Aotearoa”. In COVID-19 from the margins: Pandemic invisibilities, policies and resistance in the Datafied Society, edited by Stefania Milan, Emiliano Treré, and Silvia Masiero. 141 – 144). Amsterdam: Institute of Network Cultures.

[29] Howard-Bobiwash, Heather A., Jennie R. Joe, and Susan Lobo. “Concrete Lessons: Policies and Practices Affecting the Impact of COVID-19 for Urban Indigenous Communities in the United States and Canada”. Frontiers in Sociology 6 (2021).

[30] Carroll, Stephanie, Tahu Kukutai, and Maggie Walter, 2021. Op. Cit.

[31] Stratton, Pamela, Elena Gorodetsky, and Janine Clayton. “Pregnant in the United States in the COVID-19 pandemic: a collision of crises we cannot ignore”. Journal of the National Medical Association 113, no. 5 (2021): 499-503. https://doi.org/10.1016/j.jnma.2021.03.008

[32] Yaya, Sanni, Helena Yeboah, Carlo Handy Charles, Akaninyene Otu, and Ronald Labonte. “Ethnic and racial disparities in COVID-19-related deaths: counting the trees, hiding the forest”. BMJ Global Health 5, no. 6 (2020): e002913.

[33] Lopez, Leo, Louis H. Hart, and Mitchell H. Katz. “Racial and ethnic health disparities related to COVID-19”. Jama 325, no. 8 (2021): 719-720. https://doi.org/10.1001/jama.2020.26443

[34] Research Data Alliance COVID-19 Indigenous Data Working Group. “Data sharing respecting Indigenous data sovereignty”. In RDA COVID-19 Working Group (2020). Recommendations and guidelines on data sharing. Research Data Alliance. https://doi.org/10.15497/rda00052

[35] Government of British Columbia. (2020, November). In plain sight: Addressing Indigenous-

specific racism and discrimination in B.C. Health Care. Retrieved on 14 January 2022, from https://engage.gov.bc.ca/app/uploads/sites/613/2020/11/In-Plain-Sight-Summary-Report.pdf

[36] Limited access to quality healthcare, higher infection and fatality rates as well as the differential impacts of economic and social upheaval were identified as key issues for us in the context of the global pandemic.

[37] Carroll, Stephanie Russo, et al. “Indigenous Data in the COVID-19 Pandemic: Straddling Erasure, Terrorism, and Sovereignty”. Social Science Research Council, Items: Insights from the Social Sciences, June 2020. https://items.ssrc.org/covid-19-and-the-social-sciences/disaster-studies/indigenous-data-in-the-covid-19-pandemic-straddling-erasure-terrorism-and-sovereignty/.

[38] Government of British Columbia, 2020. Op. Cit.

[39] Stats New Zealand. “COVID-19 Lessons Learnt: Recommendations for improving the resilience of New Zealand’s government data system”. New Zealand Government, 2020.

https://www.data.govt.nz/assets/Uploads/Covid-19-lessons-learnt-full-report-Mar-2021.pdf

[40] Carroll, Stephanie Russo, Randall Akee, Pyrou Chung, Donna Cormack, Tahu Kukutai, Raymond Lovett, Michele Suina, and Robyn K. Rowe. “Indigenous peoples' data during COVID-19: from external to internal”. Frontiers in Sociology 6 (2021): 62.

[41] Stats New Zealand. “COVID-19 Lessons Learnt”, 2020. Op. Cit.

[42] Rainie, Stephanie Carroll, et al. “Issues in Open Data: Indigenous Data Sovereignty”, in The state of Open Data: Histories and horizons, edited by T. Davies, S. Walker, M. Rubinstein & F. Perini, 300-19. Cape Town and Ottawa: African Minds and International Development Research Centre, 2019.

[43] Kress, Margaret M. “Sisters of Sasipihkeyihtamowin-wise women of the Cree, Denesuline, Inuit and Métis: understandings of storywork, traditional knowledges and eco-justice among Indigenous women leaders”. (2014).

[44] Lezard Dr, Percy, Noe Prefontaine, Dawn-Marie Cederwall, Corrina Sparrow, Sylvia Maracle, Albert Beck, and Albert McCleod. “2SLGBTQQIA+ Sub-Working Group MMIWG2SLGBTQQIA+ National Action Plan Final report”. (2021).

[45] Stratton, Pamela, Elena Gorodetsky, and Janine Clayton. “Pregnant in the United States in the COVID-19 pandemic: a collision of crises we cannot ignore”. Journal of the National Medical Association 113, no. 5 (2021): 499-503. https://doi.org/10.1016/j.jnma.2021.03.008

[46] World Health Organization. “Situational Report 182: Coronavirus Disease (COVID-19)”. 20 July 2020. https://www.who.int/docs/default-source/coronaviruse/situation-reports/20200720-covid-19-sitrep-182.pdf?sfvrsn=60aabc5c_2

[47] Pelcastre-Villafuerte, Blanca, Myriam Ruiz, Sergio Meneses, Claudia Amaya, Margarita Márquez, Arianna Taboada, and Katherine Careaga. “Community-based health care for indigenous women in Mexico: a qualitative evaluation”. International Journal for Equity in Health 13, no. 1 (2014): 1-9. https://doi.org/10.1186/1475-9276-13-2

[48] Kim, Paul J. “Social determinants of health inequities in Indigenous Canadians through a life course approach to colonialism and the residential school system”. Health Equity 3, no. 1 (2019): 378-381. https://doi.org/10.1089/heq.2019.0041

[49] Power, Tamara, Denise Wilson, Odette Best, Teresa Brockie, Lisa Bourque Bearskin, Eugenia Millender, and John Lowe. “COVID‐19 and Indigenous Peoples: An imperative for action.” Journal of clinical nursing (2020).

[50] del Pino S, Camacho A. “Considerations on Indigenous Peoples, Afro-Descendants, and Other Ethnic Groups During the COVID-19 Pandemic”/ Pan American Health Organization. https://iris.paho.org/bitstream/handle/10665.2/52251/PAHOIMSPHECOVID-19200030_eng.pdf?sequence=1&isAllowed=y

[51] International Work Group for Indigenous Affairs. (2021). The Indigenous World 2021. https://www.iwgia.org/en/resources/indigenous-world.html.

[52] 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”. 11 June 2020: Social Sciences Research Council.

https://items.ssrc.org/covid-19-and-the-social-sciences/disaster-studies/indigenous-data-in-the-covid-19-pandemic-straddling-erasure-terrorism-and-sovereignty/.

[53] Carroll, Stephanie Russo, et al. “Indigenous peoples' data during COVID-19”, 2021. Op. Cit.

[54]  Carroll, Stephanie Russo, et al. “Indigenous Data in the COVID-19 Pandemic: Straddling Erasure, Terrorism, and Sovereignty”. 2020. Op. Cit.

[55] IWGIA, 2021. Op. Cit.

[56] Maestripieri, Lara. “The Covid-19 pandemics: why intersectionality matters”. Frontiers in Sociology 6 (2021): 52, (p.4).

[57] Ada Lovelace Institute, AI Now Institute, Open Government Partnership. (2021). Algorithmic accountability for the public sector. Open Government Partnership. Available at: https://www.opengovpartnership.org/documents/algorithmic-accountability-public-sector/

[58] Furlow, Bryant. “Federal investigation finds hospital violated patients’ right by profiling, separating Native mothers and newborns”. Indian Z, 24 August 2020. https://www.indianz.com/News/2020/08/24/hospital-violated-rights-native-mothers.asp.

[59] Walter, M and Kukutai, T (2018). Artificial Intelligence and Indigenous Data Sovereignty. Input paper for the Horizon Scanning Project “The Effective and Ethical Development of Artificial Intelligence: An Opportunity to Improve Our Wellbeing” on behalf of the Australian Council of Learned Academies, www.acola.org.

[60] Violence Against Women Learning Network. Op. Cit.

[61] IWGIA, 2021. Op. Cit.

[62] Carroll, Stephanie Russo, et al. “Indigenous peoples' data during COVID-19”, 2021. Op. Cit.

[63] Eissa, Azza, Robyn Rowe, Andrew Pinto, George N. Okoli, Kendall M. Campbell, Judy C. Washington, and José E. Rodríguez. “Implementing High-Quality Primary Care Through a Health Equity Lens”. The Annals of Family Medicine (2022). https://doi.org/10.1370/afm.2785

[64] National Inquiry into Missing and Murdered Indigenous Women and Girls. (2019). Reclaiming

power and place: The final report of the national inquiry into missing and murdered Indigenous women and girls. Retrieved on 14 January 2022, from https://www.mmiwg-ffada.ca/final-report/

[65] International Indigenous Women FIMI. “The Impact of COVID-19 on the Lives of Indigenous Women and their Strategies to Deal with the Pandemic”. 2020. https://fimi-iiwf.org/wp-content/uploads/2020/09/INFORME-COVID-Y-MUJERES-INDIGENAS-TRADUCCION-INGLES.pdf

[66] UN Women Americas and Caribbean. “Indigenous women leaders demand action to contain the effects of the COVID-19 crisis” 2021. https://lac.unwomen.org/en/noticias-y-eventos/articulos/2021/07/mujeres-indigenas-foro-ge

[67] Maestripieri, Lara. “The Covid-19 pandemics: why intersectionality matters”, 2021. Op. Cit.

[68] Rainie, Stephanie Carroll, et al. “Issues in Open Data: Indigenous Data Sovereignty”, 2019. Op. Cit.

[69] Walter, Maggie, et al. “Indigenous Data Sovereignty in the era of Big Data and Open Data”. Australian Journal of Social Issues 4:141, 2020. https://doi.org/10.1002/ajs4.141

[70] Walter, Maggie. “The Voices of Indigenous Data”, 2018. Op. Cit.

[71] Hudson, Maui, et al. “Rights, interests and expectations: Indigenous perspectives on unrestricted access to genomic data”. Nat Rev Genet 21, 377-384, 2020. https://doi.org/10.1038/s41576-020-0228-x.

[72] Shiva, Vandana. Biopiracy: The plunder of nature and knowledge. North Atlantic Books, 2016.

[73] Crawford, Kate. The atlas of AI. Yale University Press, 2021.

[74] Walter, Maggie, Tahu Kukutai, Stephanie Russo Carroll, Desi Rodriguez-Lonebear (Eds.) (2020). Indigenous Data Sovereignty and Policy, New York: Routledge. This book and each of its 14 chapters is available via Open Access from Taylor and Francis at: https://www.taylorfrancis.com/books/indigenous-data-sovereignty-policy-maggie-walter-tahu-kukutai-stephanie-russo-carroll-desi-rodriguez-lonebear/e/10.4324/9780429273957.

[75] Perez, Caroline Criado. Invisible women: Exposing data bias in a world designed for men. Random House, 2019.

[76] Bryant Furlow, 2020. Op. Cit.

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