Suchergebnisse

Data have become the new global currency, and a powerful force in making decisions and wielding power. As the world engages with open data, big data reuse, and data linkage, what do data-driven futures look like for communities plagued by data inequities? Indigenous data stakeholders and non-Indigenous allies have explored this question over the last three years in a series of meetings through the Research Data Alliance (RDA). Drawing on RDA and other gatherings, and a systematic scan of literature and practice, we consider possible answers to this question in the context of Indigenous peoples vis-á-vis two emerging concepts: Indigenous data sovereignty and Indigenous data governance. Specifically, we focus on the data challenges facing Native nations and the intersection of data, tribal sovereignty, and power. Indigenous data sovereignty is the right of each Native nation to govern the collection, ownership, and application of the tribe's data. Native nations exercise Indigenous data sovereignty through the interrelated processes of Indigenous data governance and decolonizing data. This paper explores the implications of Indigenous data sovereignty and Indigenous data governance for Native nations and others. We argue for the repositioning of authority over Indigenous data back to Indigenous peoples. At the same time, we recognize that there are significant obstacles to rebuilding effective Indigenous data systems and the process will require resources, time, and partnerships among Native nations, other governments, and data agents.

"This book examines how indigenous peoples around the world are demanding greater data sovereignty, and challenging the ways in which governments have historically used Indigenous data to develop policies and programs. In the digital age, governments are increasingly dependent on data and data analytics to inform their policies and decision-making. However, indigenous peoples have often been the unwilling targets of policy interventions and have had little say over the collection, use and application of data about them, their lands and cultures. At the heart of indigenous peoples' demands for change are the enduring aspirations of self-determination over their institutions, resources, knowledge and information systems. With contributors from Australia, Aotearoa New Zealand, North and South America and Europe, this book offers a rich account of the potential for Indigenous data sovereignty to support human flourishing and to protect against the ever-growing threats of data-related risks and harms." -- provided by publisher.

This book examines how Indigenous Peoples around the world are demanding greater data sovereignty, and challenging the ways in which governments have historically used Indigenous data to develop policies and programs. In the digital age, governments are increasingly dependent on data and data analytics to inform their policies and decision-making. However, Indigenous Peoples have often been the unwilling targets of policy interventions and have had little say over the collection, use and application of data about them, their lands and cultures. At the heart of Indigenous Peoples' demands for change are the enduring aspirations of self-determination over their institutions, resources, knowledge and information systems. With contributors from Australia, Aotearoa New Zealand, North and South America and Europe, this book offers a rich account of the potential for Indigenous data sovereignty to support human flourishing and to protect against the ever-growing threats of data-related risks and harms.

IntroductionGlobally, 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 International Population Data Linkage Network Conference in September of 2018, Indigenous people from three countries (Canada, New Zealand, and the United States) gathered and set the tone for discussions around Indigenous-driven IPH data linkage.
ObjectivesCentering IPH data linkage and research priorities at the conference led to budding discussions from diverse Indigenous populations to share and build on current IPH data linkage themes. This paper provides a braided summary of those discussions which resulted in the SEEDS principles for use when linking IPH data.
MethodsDuring the Conference, two sessions and a keynote were Indigenous-led and hosted by international collaborators that focused on regional perspectives on IPH data linkage. A retrospective document analysis of notes, discussions, and artistic contributions gathered from the conference resulted in a summary of shared common approaches to the linkage of IPH data.
ResultsThe SEEDS Principles emerge as collective report that outlines a living and expanding set of guiding principles that: 1) prioritizes Indigenous Peoples' right to Self-determination; 2) makes space for Indigenous Peoples to Exercise sovereignty; 3) adheres to Ethical protocols; 4) acknowledges and respects Data stewardship and governance, and; 5) works to Support reconciliation between Indigenous nations and settler states.
ConclusionEach of the elements of SEEDS need to be enacted together to create a positive data linkage environment. When implemented together, the SEEDS Principles can lead to more meaningful research and improved Indigenous data governance. The mindful implementation of SEEDS could lead to better measurements of health progress through linkages that are critical to enhancing health care policy and improving health and wellness outcomes for Indigenous nations.

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 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 in AI/AN/NH communi­ties. We report findings related to perspec­tives on genetic research, data sharing, and envisioning stronger oversight and manage­ment of data. In particular, participants voiced concerns about different models of data sharing, infrastructure and logistics for housing data, and who should have authority to grant access to data. The results will ultimately guide policy-making and the creation of guidelines and new strategies for tribes to drive the research agenda and promote ethically and culturally appropriate research.Ethn Dis.2019;29(Suppl 3):659-668;doi:10.18865/ed.29.S3.659

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 Peopleson their own termsto improve access to and use of data for effective public health responses to COVID-19.

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.

BACKGROUND: The inclusion of protective factors ("assets") are increasingly supported in developing culturally grounded interventions for American Indian (AI) populations. This study sought to explore AI women's cultural assets, perspectives, and teachings to inform the development of a culturally grounded, intergenerational intervention to prevent substance abuse and teenage pregnancy among AI females. METHODS: Adult self-identified AI women (N = 201) who reside on the Navajo Nation completed a cross-sectional survey between May and October 2018. The 21-question survey explored health communication around the transition to womanhood, cultural assets, perceptions of mother–daughter reproductive health communication, and intervention health topics. Univariate descriptive analyses, chi squared, and fisher's exact tests were conducted. RESULTS: Respondents ranged in age from 18 to 82 years, with a mean age of 44 ± 15.5 years. Women self-identified as mothers (95; 48%), aunts (59; 30%), older sisters (55; 28%), grandmothers (37; 19%), and/or all of the aforementioned (50; 25%). 66% (N = 95) of women admired their mother/grandmother most during puberty; 29% (N = 58) of women were 10–11 years old when someone first spoke to them about menarche; and 86% (N=172) felt their culture was a source of strength. 70% (N = 139) would have liked to learn more about reproductive health when they were a teenager; 67% (N = 134) felt Diné mothers are able to provide reproductive health education; 51% (N = 101) reported having a rite of passage event, with younger women desiring an event significantly more than older women. Responses also indicate a disruption of cultural practices due to government assimilation policies, as well as the support of male relatives during puberty. CONCLUSIONS: Results informed intervention content and delivery, including target age group, expanded caregiver eligibility criteria, lesson delivery structure and format, and protective cultural teachings. Other implications include the development of a ...

Concerns about secondary use of data and limited opportunities for benefit-sharing have focused attention on the tension that Indigenous communities feel between (1) protecting Indigenous rights and interests in Indigenous data (including traditional knowledges) and (2) supporting open data, machine learning, broad data sharing, and big data initiatives. The International Indigenous Data Sovereignty Interest Group (within the Research Data Alliance) is a network of nation-state based Indigenous data sovereignty networks and individuals that developed the 'CARE Principles for Indigenous Data Governance' (Collective Benefit, Authority to Control, Responsibility, and Ethics) in consultation with Indigenous Peoples, scholars, non-profit organizations, and governments. The CARE Principles are people– and purpose-oriented, reflecting the crucial role of data in advancing innovation, governance, and self-determination among Indigenous Peoples. The Principles complement the existing data-centric approach represented in the 'FAIR Guiding Principles for scientific data management and stewardship' (Findable, Accessible, Interoperable, Reusable). The CARE Principles build upon earlier work by the Te Mana Raraunga Maori Data Sovereignty Network, US Indigenous Data Sovereignty Network, Maiam nayri Wingara Aboriginal and Torres Strait Islander Data Sovereignty Collective, and numerous Indigenous Peoples, nations, and communities. The goal is that stewards and other users of Indigenous data will 'Be FAIR and CARE.' In this first formal publication of the CARE Principles, we articulate their rationale, describe their relation to the FAIR Principles, and present examples of their application.

Concerns about secondary use of data and limited opportunities for benefit-sharing have focused attention on the tension that Indigenous communities feel between (1) protecting Indigenous rights and interests in Indigenous data (including traditional knowledges) and (2) supporting open data, machine learning, broad data sharing, and big data initiatives. The International Indigenous Data Sovereignty Interest Group (within the Research Data Alliance) is a network of nation-state based Indigenous data sovereignty networks and individuals that developed the 'CARE Principles for Indigenous Data Governance' (Collective Benefit, Authority to Control, Responsibility, and Ethics) in consultation with Indigenous Peoples, scholars, non-profit organizations, and governments. The CARE Principles are people– and purpose-oriented, reflecting the crucial role of data in advancing innovation, governance, and self-determination among Indigenous Peoples. The Principles complement the existing data-centric approach represented in the 'FAIR Guiding Principles for scientific data management and stewardship' (Findable, Accessible, Interoperable, Reusable). The CARE Principles build upon earlier work by the Te Mana Raraunga Maori Data Sovereignty Network, US Indigenous Data Sovereignty Network, Maiam nayri Wingara Aboriginal and Torres Strait Islander Data Sovereignty Collective, and numerous Indigenous Peoples, nations, and communities. The goal is that stewards and other users of Indigenous data will 'Be FAIR and CARE.' In this first formal publication of the CARE Principles, we articulate their rationale, describe their relation to the FAIR Principles, and present examples of their application.