Trusted partners, community priorities, and data protections: requirements for precision medicine research with Alaska Native peoples

Journal of Community Genetics https://doi.org/10.1007/s12687-025-00779-2 RESEARCH Trusted partners, community priorities, and data protections: requirements for precision medicine research with Alaska Native peoples R. Brian Woodbury1 · Julie A. Beans1 · Vanessa Y. Hiratsuka1 Received: 14 May 2024 / Accepted: 11 February 2025 © The Author(s) 2025 Abstract Precision medicine holds promise for improving health care by tailoring disease treatment and prevention efforts to the needs of individual patients. It also raises ethical questions related to equitable distribution of the benefits of precision medicine; data management, including the terms of data ownership, sharing, and security; and, the nature and extent of community engagement in and oversight of research. These questions are particularly salient for minoritized communities that have been harmed by unethical research practices and often deprived the full benefit of advances in medical science. Understanding the perspectives of these communities is essential to the design and conduct of ethical and effective precision medicine research. This study explored perspectives on the acceptability, feasibility, value, and benefits and harms of precision medicine research among Alaska Native and American Indian (ANAI) peoples. We conducted four focus groups with ANAI individuals who receive primary care from a Tribal health organization in Anchorage, Alaska. Participants were willing to engage in precision medicine research provided specific requirements were met. Research must be conducted by the Tribal health organization or another trusted partner, community health priorities must drive the research agenda, and researchers must employ robust data protections to guard against loss of data security and maintain control over data use and access. These requirements work collectively to ensure research benefits and respects Tribal sovereignty. These findings could help inform efforts to design and implement precision medicine research programs tailored to concerns of ANAI peoples. Keywords Precision medicine · Alaska Native peoples · Community-based participatory research · Research ethics Introduction Precision medicine has been described as “an emerging approach for disease treatment and prevention that takes into account individual variability in genes, environment, and lifestyle for each person” (Medline Plus 2022). The application of this approach within a research context (hereafter, precision medicine research), explores how these individual-level factors interact in complex ways to jointly produce health outcomes and holds potential to improve disease prevention, detection, and treatment by enabling development of targeted screening and diagnostic tools R. Brian Woodbury 1 Southcentral Foundation, Anchorage, AK, USA and personalized medical treatments. To date, precision medicine has spurred advances in multiple areas of clinical medicine and research, including cancer diagnosis and treatment (Mechahougui et al. 2024), perinatal and rare disease screening (Botos et al. 2023; Méndez-Vidal et al. 2025), and vaccine research (Montin et al. 2024). In tandem with these benefits, precision medicine research also entails risks and the potential for attendant harms. The very large and heterogenous datasets developed for use in precision medicine research pose inherent data security challenges and associated privacy risks and harms, which are heightened by the inclusion in these databases of identifying or sensitive data (e.g., genetic data, behavioral health information) and expectations for extensive data sharing in support of secondary research (Ahmed et al. 2023; Cumyn et al. 2023; Gürsoy 2022). The relative complexity and novelty of data management regimes and 13 Journal of Community Genetics research designs in precision medicine may create challenges for achieving truly informed consent of participants, as does the expectation—present in some precision medicine research programs—that participants give broad consent to use their data for future, and sometimes incompletely specified, research efforts (Erdmann et al. 2021; Lee 2021). Precision medicine research also raises equity concerns as medical advancements, such as genetic testing, are not disseminated and implemented equitably leaving minoritized populations unable to access and benefit from new scientific technologies (Ahmed et al. 2023; Ferryman and Pitcan 2018; Geneviève et al. 2020). Alaska Native and American Indian (ANAI) peoples have experiences with research that has caused individual and community harms, while not providing direct ANAI community benefit (Hodge 2012; NRC Committee 1996; Pacheco et al. 2013; Skewes et al. 2020; Tuck 2009). Moreover, many ANAI peoples have expressed concerns and the need for necessary governance related to secondary use of data and biospecimens for research (Hudson et al. 2020; James et al. 2014). ANAI Tribes and Tribal organizations have developed Tribal research codes as sovereign nations to regulate the conduct of research in their communities (Carroll et al. 2019, 2022A 2022B; Garcia 2018) and some Tribal leaders have proposed terms and conditions for precision medicine resarch within their communities (Trinidad et al. 2022). Tribal research codes and community research review processes have assisted ANAI peoples in ensuring community benefit and maintaining data sovereignty to protect from biopiracy concerns (Hudson et al. 2020). Data management practices outside of Tribal governance may deter ANAI peoples from engaging in health research (Garba et al. 2023; Woodbury et al. 2019a, b). A growing body of research suggests that some ANAI communities are open to participating in precision medicine research, provided certain conditions related to the aims and conduct of research and the management of data are met (Avey et al. 2016; Beans et al. 2020; Claw et al. 2021; Hiratsuka et al. 2012, 2020; Reedy et al. 2020; Trinidad et al. 2022 ). Additionally, the consideration for multiple health determinants in precision medicine approaches may contribute to its relevance for ANAI peoples, given historic and ongoing disproportionate exposures to social and environmental risk factors (Meltzer et al. 2020; Trout et al. 2018; Wark et al. 2022). This article presents findings from focus groups held to explore perspectives of ANAI peoples on precision medicine research. The specific aim of the focus groups was consequently broad: To explore community member perspectives on the acceptability, feasibility, value, and benefits and harms of precision medicine research involving ANAI peoples. 13 Methods Study environment and participant recruitment All research activities were conducted by the Southcentral Foundation (SCF) Research Department. SCF is a Tribal health organization headquartered in Anchorage and serving over 70,000 ANAI peoples living in urban and rural areas throughout southcentral Alaska. SCF is nationally (...truncated)