Indigenous scholars are leading initiatives to improve access to genetic and genomic research and health care based on their unique cultural contexts and within sovereign-based governance models created and accepted by their peoples. In the past, Indigenous peoples’ engagement with genomicresearch was hampered by a lack of standardized guidelines and institutional partnerships, resulting in group harms. This article provides a comparative analysis of research guidelines from Canada, New Zealand, Australia, and the United States that pertain to Indigenous peoples. The goals of the analysis are to identify areas that need attention, support Indigenous-led governance, and promote the development of a model research policy framework for genomic research and health care that has international relevance for Indigenous peoples.

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.

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: IndigenousdatasovereigntyandIndigenousdatagovernance.Specifically,wefocusonthe

Data about Indigenous populations in the United States are inconsistent and irrelevant. Federal and state governments and researchers direct most collection, analysis, and use of data about U.S. Indigenous populations. Indigenous Peoples' justified mistrust further complicates the collection and use of these data. Nonetheless, tribal leaders and communities depend on these data to inform decision making. Reliance on data that do not reflect tribal needs, priorities, and self-conceptions threatens tribal self-determination. Tribal data sovereignty through governance of data on Indigenous populations is long overdue. This article provides two case studies of the Ysleta del Sur Pueblo and Cheyenne River Sioux Tribe and their demographic and socioeconomic data initiatives to create locally and culturally relevant data for decision making.

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

Health service provision has been an aspect of indigenous-United States relationships for over two hundred years, yet America's First Peoples continue to suffer from poor health outcomes when compared with other racial or ethnic groups in the United States. An important change over recent decades is that more and more tribes are managing their own health care services—a realignment of administration and authority that has the potential to substantially improve American Indian and Alaska Native health in years to come. This paper describes the history of health care provision to federally recognized American Indian tribes. It continues by documenting the sparse research literature on tribal management of health care services and identifying information still needed to bring knowledge of this topic up-to-date. Five challenges for tribal management of health-care services that should be considered by tribes and policymakers in their health-care efforts and brought to bear on future research are discussed. By addressing both tribal control of health-care services and the role of tribes in changes to federally provided health care, this paper adds the lens of tribal sovereignty to current discussions of the history and policy context for American Indian and Alaska Native health.

The lack of literature on Indigenous conceptions of health and the social determinants of health (SDH) for US Indigenous communities limits available information for Indigenous nations as they set policy and allocate resources to improve the health of their citizens. In 2015, eight scholars from tribal communities and mainstream educational institutions convened to examine: the limitations of applying the World Health Organization’s (WHO) SDH framework in Indigenous communities; Indigenizing the WHO SDH framework; and Indigenous conceptions of a healthy community. Participants critiqued the assumptions within the WHO SDH framework that did not cohere with Indigenous knowledges and epistemologies and created a schematic for conceptualizing health and categorizing its determinants. As Indigenous nations pursue a policy role in health and seek to improve the health and wellness of their nations’ citizens, definitions of Indigenous health and well-being should be community-driven and Indigenous-nation based. Policies and practices for Indigenous nations and Indigenous communities should reflect and arise from sovereignty and a comprehensive understanding of the nations and communities’ conceptions of health and its determinants beyond the SDH.

The lack of good data about U.S. American Indian and Alaska Native populations hinders tribes’ development activities, but it also highlights a space for sovereign action. In coming years, tribes will no doubt continue to advocate for better national data and at the same time increasingly implement their own “data agendas” by gathering high quality, culturally relevant information about their communities. With more meaningful data, tribal policymakers can make informed decisions about which policies and programs are right for the task at hand. Strategic data planning empowers tribes to tell their communities’ stories through their own data, and not that of others.