Empowering Equitable Data Use Partnerships and Indigenous Data Sovereignties Amid Pandemic Genomics.

The COVID-19 pandemic has inequitably impacted Indigenous communities in the United States. In this emergency state that highlighted existing inadequacies in US government and tribal public health infrastructures, many tribal nations contracted with commercial entities and other organization types to conduct rapid diagnostic and antibody testing, often based on proprietary technologies specific to the novel pathogen. They also partnered with public-private enterprises on clinical trials to further the development of vaccines. Indigenous people contributed biological samples for assessment and, in many cases, broadly consented for indefinite use for future genomics research. A concern is that the need for crisis aid may have placed Indigenous communities in a position to forego critical review of data use agreements by tribal research governances. In effect, tribal nations were placed in the unenviable position of trading short-term public health assistance for long-term, unrestricted access to Indigenous genomes that may disempower future tribal sovereignties over community members' data. Diagnostic testing, specimen collection, and vaccine research is ongoing; thus, our aim is to outline pathways to trust that center current and future equitable relationship-building between tribal entities and public-private interests. These pathways can be utilized to increase Indigenous communities' trust of external partners and share understanding of expectations for and execution of data protections. We discuss how to navigate genomic-based data use agreements in the context of pathogen genomics. While we focus on US tribal nations, Indigenous genomic data sovereignties relate to global Indigenous nations regardless of colonial government recognition.

Deliberations with American Indian and Alaska Native People about the Ethics of Genomics: An Adapted Model of Deliberation Used with Three Tribal Communities in the United States.

BACKGROUND: This paper describes the design, implementation, and process outcomes from three public deliberations held in three tribal communities. Although increasingly used around the globe to address collective challenges, our study is among the first to adapt public deliberation for use with exclusively Indigenous populations. In question was how to design deliberations for tribal communities and whether this adapted model would achieve key deliberative goals and be well received. METHODS: We adapted democratic deliberation, an approach to stakeholder engagement, for use with three tribal communities to respect tribal values and customs. Public deliberation convenes people from diverse backgrounds in reasoned reflection and dialogue in search of collective solutions. The deliberation planning process and design were informed by frameworks of enclave deliberation and community-based participatory research, which share key egalitarian values. The deliberations were collaboratively designed with tribal leadership and extensive partner input and involvement in the deliberations. Each deliberation posed different, locally relevant questions about genomic research, but used the same deliberation structure and measures to gauge the quality and experience of deliberation. RESULTS: A total of 52 individuals participated in the deliberations across all three sites. Deliberants were balanced in gender, spanned decades in age, and were diverse in educational attainment and exposure to health research. Overall, the deliberations were positively evaluated. Participant perceptions and external observer datasets depict three deliberations that offered intensive conversation experiences in which participants learned from one another, reported feeling respected and connected to one another, and endorsed this intensive form of engagement. CONCLUSION: The adapted deliberations achieved key deliberative goals and were generally well received. Limitations of the study are described.

Deliberations About Genomic Research and Biobanks With Citizens of the Chickasaw Nation.

Amid the rapid growth of precision medicine and biobanking initiatives, there have been few efforts at cataloging the implications of these initiatives for Indigenous communities. A consortium involving a university and three American Indian/Alaska Native (AIAN) community partners is working to promote deliberation and dialog in AIAN communities about the potential benefits and risks of genomic research for those communities. The first of the consortium's three planned deliberations was held in September 2018 with citizens of the Chickasaw Nation, a federally recognized tribe in south-central Oklahoma with a full-service medical center and growing research capacity and oversight. Consortium members and the Chickasaw Nation Department of Health Administration designed a deliberative forum for Chickasaw citizens to consider the potential benefits and risks of participating in genomic research and biobanks. In this manuscript, we describe the deliberative method used in this event and report on the ideas discussed during the tribal citizens' deliberations. Chickasaw citizens identified many risks and benefits associated with genomic research and biobanks, including the potential for medical advancements that might benefit the Chickasaw community as well as the possibility of discrimination against the Chickasaw people. Although participants thought the potential benefits outweighed the potential risks, that moral calculation was contingent on whether control of the research and biobanks rested with Chickasaw leadership, researchers, and citizens.

An Alaska Native community's views on genetic research, testing, and return of results: Results from a public deliberation.

As genetic testing technology advances, genetic testing will move into standard practice in the primary care setting. Genetic research, testing, and return of results are complex topics that require input from Alaska Native and American Indian (ANAI) communities as policies are developed for implementation. This study employed a day and half long public deliberation with ANAI primary care patients to elicit value-laden views of genetic research, testing, and return of results. Participants emphasized the need for a balance between the potential for genetics research, testing, and return of results to empower individuals and improve health with the potential to expose individuals and communities to privacy breaches, discrimination, and emotional harms. Public deliberation was well received by this group of participants and elicited rich discussion on the complex topic of genetic research, testing, and return of results.

Deliberative democracy and historical perspectives on American Indian/Alaska native political decision-making practices.

Public deliberation has risen to the forefront of governance as a technique for increasing participation in policy making. Scholars and practitioners have also noted the potential for deliberation to give greater influence to historically marginalized populations, such as Indigenous peoples. However, there has been less attention paid to the potential fit between the ideals of deliberation and the governance and decision making practices of American Indian and Alaska Native (AI/AN) peoples. In this paper, we begin to address this gap by analyzing accounts of AI/AN governance from the perspective of deliberation, and note areas of overlap, synergy, and conflict. We conduct a close reading of key historical and ethnographic accounts of four historical AI/AN contexts-the Iroquois Confederation under the Great Law of Peace, 19th century accounts of the Ojibwa village, the Santa Clara Pueblo government in pre-19th century, and Yup'ik village life in the early 20th century-and a more contemporary case in the form of the Santa Clara Pueblo's Constitution from the Indian Reorganization Act period. We then apply two sets of key criteria for deliberative democracy-from the scholars Robert Dahl and John Gastil-to these accounts and note the ways in which each system is or is not congruent with these frameworks of deliberation. We find variations between these historical tribal contexts in our analysis. Social components of deliberation, such as respectful discussion and equal opportunities to participate, were partially or fully present in many accounts of governance practices, but it was less clear whether the analytic components, such as discussion of a range of solutions, were included in some forms of tribal governance. We then explore the potential implications of our findings for public deliberation within and in AI/AN tribes. We note that deliberative scholars and practitioners should be wary of over-generalizing about AI/AN tribes.

"We Don't Need a Swab in Our Mouth to Prove Who We Are": Identity, Resistance, and Adaptation of Genetic Ancestry Testing among Native American Communities.

Genetic ancestry testing (GAT) provides a specific type of knowledge about ancestry not previously available to the general public, prompting questions about the conditions whereby genetic articulations of ancestry present opportunities to forge new identities and social ties but also new challenges to the maintenance of existing social structures and cultural identities. The opportunities and challenges posed by GAT are particularly significant for many indigenous communities-whose histories are shaped by traumatic interactions with colonial powers and Western science-and for whom new applications of GAT may undermine or usurp long-standing community values, systems of governance, and forms of relationality. We conducted 13 focus groups with 128 participants and six in-depth, semistructured interviews with a variety of community leaders examining the perceptions of GAT within indigenous communities across Oklahoma. Our interviews and focus groups suggest that participants-through the articulation of indigeneity as experiential and relational in nature and inherently distinct from genetic notions of ancestry-resist much of the challenge presented by GAT in usurping traditional forms of identity while at the same time recognizing the utility of the technology for tracing unknown ancestry and identifying health risks in the community.

Genes, Race, and Causation: US Public Perspectives About Racial Difference.

Concerns have been raised that the increase in popular interest in genetics may herald a new era within which racial inequities are seen as 'natural' or immutable. In the following study, we provide data from a nationally representative survey on how the US population perceives general ability, athleticism, and intellect being determined by race and/or genetics and whether they believe racial health inequities to be primarily the product of genetic or social factors. We find that self-described race is of primary importance in attributing general ability to race, increasing age is a significant factor in attributing athleticism and intellect to genes and race, and education is a significant factor in decreasing such racially and genetically deterministic views . Beliefs about the meaning of race are statistically significantly associated with respect to the perception of athletic abilities and marginally associated with the perception of racial health inequalities being either socially or genetically derived. Race, education, socioeconomic status, and concepts of race were frequently found to be multiplicative in their statistical effects. The persistent acceptance of a genetically and racially deterministic view of athleticism among the White and older population group is discussed in respect to its social impact, as is the high level of agreement that general abilities are determined by race among non-White respondents and those of lower socioeconomic status. We argue that these findings highlight that both biological and non-biological forms of understanding race continue to play a role into the politics of race and social difference within contemporary US society.

Barriers and Strategies Related to Qualitative Research on Genetic Ancestry Testing in Indigenous Communities.

Conducting genetics-related research with populations that have historically experienced considerable harm and little benefit from genetics research poses unique challenges for understanding community-based perceptions of new genetic technologies. This article identifies challenges and strategies for collecting qualitative data on the perceptions of direct-to-consumer (DTC) Genetic Ancestry tests (GAT) among diverse Indigenous communities. Based on a 3-year project related to perceptions, attitudes, and values associated with genetic ancestry testing among diverse Indigenous communities in Oklahoma, the engagement process revealed specific opportunities to improve the process of qualitative data collection related to GAT, and more broadly, to conduct genetics-related research with Indigenous communities in culturally and methodologically appropriate ways. Priority areas include issues related to participant recruitment and tribal advisory boards, challenges of self-identification as a recruitment mechanism, and the necessity of including Indigenous researchers in all aspects of the research process.

Stakeholder engagement: a model for tobacco policy planning in Oklahoma Tribal communities.

BACKGROUND: Oklahoma law pre-empts local governments from enacting smoking restrictions inside public places that are stricter than state law, but the sovereign status of Oklahoma's 38 Tribal nations means they are uniquely positioned to stand apart as leaders in the area of tobacco policy. PURPOSE: To provide recommendations for employing university-Tribal partnerships as an effective strategy for tobacco policy planning in tribal communities. METHODS: Using a community-based participatory research approach, researchers facilitated a series of meetings with key Tribal stakeholders in order to develop a comprehensive tobacco policy plan. Ongoing engagement activities held between January 2011 and May 2012, including interdepartmental visits, facility site tours, interviews, and attendance at tribal activities, were critical for fostering constructive and trusting relationships between all partners involved in the policy planning process. RESULTS: The 17-month collaborative engagement produced a plan designed to regulate the use of commercial tobacco in all Tribally owned properties. The extended period of collaboration between the researchers and Tribal stakeholders facilitated: (1) levels of trust between partners; and (2) a steadfast commitment to the planning process, ensuring completion of the plan amid uncertain political climates and economic concerns about tobacco bans. CONCLUSIONS: Extended engagement produced an effective foundation for policy planning that promoted collaboration between otherwise dispersed Tribal departments, and facilitated communication of diverse stakeholder interests related to the goal of tobacco policies. The findings of this study provide useful strategies and best practices for those looking to employ Tribal-university partnerships as strategies for tobacco control planning and policy-based research.