National Institutes of Health data-sharing policies aim to maximize public benefit derived from genetic studies by increasing research efficiency and the use of a pooled data resource for future studies. While broad access to data may lead to benefits for populations underrepresented in genetic studies, such as indigenous groups, tribes have ownership interest in their data. The Northwest-Alaska Pharmacogenetic Research Network, a partnership involving tribal organizations and universities conducting basic and translational pharmacogenetic research, convened a meeting to discuss the collection, management, and secondary use of research data, and of the processes surrounding access to data stored in federal repositories. This article reports on tribal perspectives that emerged from the dialogue and discusses the implications of tribal government sovereign status on research agreements and data-sharing negotiations. There is strong tribal support for efficient research processes that expedite the benefits from collaborative research, but there is also a need for data sharing procedures that take into account tribal sovereignty and appropriate oversight of research ¬ such as tribally-based research review processes and review of draft manuscripts. We also note specific ways in which accountability could be encouraged by National Institutes of Health as part of the research process.
Pharmacogenetic research offers the potential to improve the safety and efficacy of drug prescribing. Assuring that the benefits of this research reach indigenous and other medically underserved people is an important justice concern. First, however, a legacy of mistrust, derived from traditional research practices that disempower communities, must be overcome. Linking pharmacogenetic research to collaborative, power-sharing research partnerships provides a valuable opportunity to develop new and positive precedents for genetic research in indigenous communities.
Implementation of Evidence-Based Practices (EBP) within American Indian and Alaskan Natives communities is currently an area of debate and contention. There is considerable concern about expanding EBP policy mandates to AI/AN communities as these mandates, either through funding restrictions or other de facto policies, recall past histories of clinical colonization and exploitation by the state and federal government. As a response, work is being done to evaluate indigenous programs and examine strategies for culturally-sensitive implementation. While the literature reflects the perspectives of AI/AN populations on EBP generally, no one has yet reported the perspectives of AI/AN communities on how to feasibly achieve widespread EBP implementation. We report the findings of a statewide Tribal Gathering focused on behavioral health interventions for youth. The Gathering participants included AI/AN individuals as well as staff working with AI/AN populations in tribal communities. Participants identified strengths and weaknesses of the five legislatively fundable programs for youth delinquency in Washington State and discussed strategies likely to be effective in promoting increased uptake within tribes. Analysis of these discussions resulted in many useful insights in program-specific and community-driven strategies for implementation. In addition, two major themes emerged regarding widespread uptake: the importance of a multi-phase engagement strategy and adopting a consortium/learning community model for implementation. The findings from this Gathering offer important lessons that can inform current work regarding strategies to achieve a balance of program fidelity and cultural-alignment. Attending to engagement practices at the governance, community and individual level are likely to be key components of tribal-focused implementation. Further, efforts to embed implementation within a consortium or learning community hold considerable promise as a strategy for sustainability.
Objective Examine the relationship between healthcare access and diabetes management among a geographically diverse sample of American Indians (AIs) age 50 and older with type 2 diabetes. Method We examined the relationship between access to care and diabetes management, as measured by HbA1c values, using 1998–99 data from the Strong Heart Family Study. A series of bivariate and multivariate linear models examined the relationships between nine access-related variables and HbA1c values. Results In bivariate analyses, out-of-pocket costs were inversely associated with lower HbA1c levels. No other access-related characteristics were significantly associated with diabetes management in bivariate or in multivariate models. Discussion Access-related barriers were not associated with worse diabetes management in multivariate analyses. The study concludes with implications for clinicians working with AI populations to enhance opportunities for diabetes management.
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