Julie A. Beans

Correction on: Beans JA, Blanchard JW, Hiratsuka VY, Helton T, Carroll SR, Dillard DA, Orr R, Gachupin FC, Hull SC, Haring RC, Garrison NA, Saunkeah B, Tsosie KS, Goldenberg AJ, Wilson D, Sharp RR, Yracheta J, Blacksher E, Woodbury RB, Livingston D and Spicer P (2026) A workshop considering genetic research and data collection with American Indian and Alaska Native people outside of Tribal jurisdiction. Front. Genet. 17:1802493. doi: 10.3389/fgene.2026.1802493There was a mistake in Table 1 as published. To respectfully acknowledge and accurately document, names and title must be capitalized appropriately. The original version of this article has been updated.

Introduction: In the United States (US), Tribes are sovereign nations and have the right to oversee research conducted with Tribal citizens. However, it is unclear who should approve research protocols when data from American Indian and Alaska Native (AIAN) people are collected off Tribal lands. As genetic research continues to advance and transform the delivery of healthcare, equitable inclusion of AIAN people is necessary, but oversight of research needs clarity. Methods: We held a 3-day workshop with US thought leaders on genetic and other health research with AIAN people in urban areas to explore views and values on this issue and to discuss potential policy and practice solutions. Results: Thirty-six individuals attended. Solidarity surfaced as a foundational motivation for Tribal Nations to review research conducted with AIAN people, whether on Tribal lands or not. Understanding data from Indigenous perspectives was identified as a way to ensure appropriate AIAN community protections are in place. Three discrete areas to improve policy were suggested–Tribal, Academic Institution, and National–to protect AIAN people participating in research both on and off Tribal lands. Discussion: Researchers, whether Indigenous or not, must recognize Tribal sovereignty and operate in solidarity with the applicable and most appropriate ethical principles and regulations.

Background: Recognizing the bidirectional relationship between oral health and diabetes mellitus (DM) and integrating DM screening and referrals to primary care into routine dental hygiene visits has strong potential to expand access to diabetes prevention and early detection services. Objective: This paper describes methods used in an academic-Tribal partnership to co-design, coimplement, and pilot-test a DM screening and referral process within a Tribal health care setting. Methods: The project uses implementation science frameworks and applies a 4-step iterative, participatory planning approach. Project implementation steps include (1) conducting key informant interviews with dental and primary care staff and administrators and surveying dental care recipients to assess the context for implementation and receptivity toward the proposed innovation; (2) forming and engaging a multidisciplinary planning team comprising dental, primary care, informatics, and care improvement personnel, care recipients, and researchers; (3) applying survey and interview findings and internal knowledge of clinic procedures and processes to develop a feasible dental DM screening service model to pilot test with iterative data collection; and (4) refining and disseminating the innovation. Results: Key informant interviews and patient surveys were completed in September 2023. The planning team then developed the pilot process based on these findings in combination with lived experience. Study enrollment for the pilot began in April 2025 and was completed in July 2025. Data analysis is underway. Conclusions: Offering DM screening during dental appointments aligns dental and primary care services to prevent or delay DM onset. This paradigm shift has the potential to facilitate communication between dental and primary care providers, improve the coordination of care across dental and medical services, capitalize on opportunities to reach individuals in need of DM screening while they are accessing other services, and expand health system capacity to identify individuals at risk and offer them appropriate DM services.

Objective: To examine the relationship between prenatal vitamin D serum levels and postpartum bleeding. Methods: We conducted a retrospective electronic health record cohort study of pregnant Alaska Native and American Indian (ANAI) people in southwestern Alaska who had at least one prenatal vitamin D level measurement recorded and had a vaginal birth between January 2017 and December 2019. Prenatal vitamin D level was the independent variable; postpartum abnormal bleeding and hemorrhage occurrence after a vaginal birth were the primary outcomes. Results: A total of 1343 index pregnancies were included in this study, of which 1258 (94%) had a vaginal birth with 370 (29%) experiencing blood loss ≥500 mL and 127 (10%) ≥1000 mL. Risk factors included prior postpartum hemorrhage, suspected macrosomia, twin gestation, magnesium sulfate use in the setting of pre‐eclampsia, induction time >36 h, oxytocin use >12 h and third stage of labor >20 min. Deficient vitamin D levels (under 12 ng/mL) were found in 10.5%, 4.8%, and 5.3% of records in the first, second and third trimesters, respectively. Logistic regression indicated an association between vitamin D level under 12 ng/mL in the first trimester and postpartum bleeding ≥500 mL ( n = 540, P = 0.0097, odds ratio [OR] = 2.2). No association was found between abnormal bleeding and being vitamin D deficient in the second and third trimesters. Conclusion: There is a need for further research of vitamin D screening and supplementation before and during pregnancy as a possible risk reduction tool for abnormal postpartum bleeding.

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.

The cognitive interview process is a method to validate a survey instrument’s face validity and enhance confidence in item interpretation, as well as a method to engage communities in the research process. Trained American Indian and Alaska Native (AIAN) interviewers conducted retrospective cognitive interviews at three AIAN communities to assess the item quality of a 131-item survey item that measures AIAN knowledge and attitudes on genetics and biological specimens. A cognitive interview process was used to assess cultural consonance, thought processes used when considering survey instructions, items and responses, and language preference of survey items in the development of a survey to assess public knowledge and attitudes on genetics. Content analysis was used to analyze interview data. Survey instructions, items and scales generated no cognitive difficulties. The participants noted being unfamiliar with terminology used to describe genetic and biological specimens. In several cases, the participants’ written response in the survey and verbal response in the interview did not align. A resultant 52-item survey for use in AIAN communities was finalized. Cognitive interviewing is resource-intensive; however, ignoring community engagement during survey development results in inappropriate interpretations about culturally diverse populations such as AIAN peoples.

Pre-diabetes (pre-DM) is a strong predictor of diabetes (DM) over time. This study investigated how much of the recent increase in pre-DM identified among Alaska Native (AN) peoples living in urban southcentral Alaska may be due to changes in diagnostic methods. We used clinical and demographic data collected at baseline between 2004 and 2006 and at follow-up collected between 2015 and 2017 from the urban southcentral Alaska Education and Research Towards Health (EARTH) cohort. We used descriptive statistics and logistic regression to explore differences in demographic and clinical variables among the identified pre-DM groups. Of 388 participants in the follow-up study, 243 had A1c levels indicating pre-DM with only 20 demonstrating pre-DM also by fasting blood glucose (FBG). Current smoking was the sole predictor for pre-DM by A1c alone while abdominal obesity and elevated FBG-predicted pre-DM by A1c+FBG. No participants had an elevated FBG without an A1c elevation. A substantial portion of the rise in pre-DM found among urban southcentral AN peoples in the EARTH follow-up study was due to the addition of A1c testing. Pre-DM by A1c alone should be used to motivate behavioural changes that address modifiable risk factors, including smoking cessation, physical activity and weight management.

Newborn screening in Alaska includes screening for carnitine palmitoyltransferase 1A (CPT1A) deficiency. The CPT1A Arctic variant is a variant highly prevalent among Indigenous peoples in the Arctic. In this study, we sought to elicit Alaska Native (AN) community member and AN-serving healthcare providers’ knowledge and perspectives on the CPT1A Arctic variant. Focus groups with community members and healthcare providers were held in two regions of Alaska between October 2018 and January 2019. Thematic analysis was used to identify recurring constructs. Knowledge and understanding about the CPT1A Arctic variant and its health impact varied, and participants were interested in learning more about it. Additional education for healthcare professionals was recommended to improve providers’ ability to communicate with family caregivers about the Arctic variant. Engagement with AN community members identified opportunities to improve educational outreach via multiple modalities for providers and caregivers on the Arctic variant, which could help to increase culturally relevant guidance and avoid stigmatization, undue worry, and unnecessary intervention. Education and guidance on the care of infants and children homozygous for the CPT1A Arctic variant could improve care and reduce negative psychosocial effects.

Alaska Native communities are working to prevent cancer through increased cancer screening and early detection. We examined the prevalence of self-reported colorectal (CRC), cervical, and breast cancer screening among Alaska Native participants in the southcentral Alaska Education and Research toward Health (EARTH) study at baseline (2004–2006) and ten-year follow-up (2015–2017); participant characteristics associated with screening; and changes in screening prevalence over time. A total of 385 participants completed questionnaires at follow-up; 72% were women. Of those eligible for CRC screening, 53% of follow-up participants reported a CRC screening test within the past 5 years, significantly less than at baseline (70%) (p = 0.02). There was also a significant decline in cervical cancer screening between baseline and follow-up: 73% of women at follow-up vs. 90% at baseline reported screening within the past three years (p < 0.01). There was no significant difference in reported breast cancer screening between baseline (78%) and follow-up (77%). Colorectal and cervical cancer screening prevalence in an urban, southcentral Alaska Native cohort declined over 10 years of follow-up. Increased cancer screening and prevention are needed to decrease Alaska Native cancer-related morbidity and mortality.

Introduction: Precision medicine research investigates the differences in individuals’ genetics, environment, and lifestyle to tailor health prevention and treatment options as part of an emerging model of health care delivery. Advancing precision medicine research will require effective communication across a wide range of scientific and health care disciplines and with research participants who represent diverse segments of the population. Methods: A multidisciplinary group convened over the course of a year and developed precision medicine research case examples to facilitate precision medicine research discussions with communities. Results: A shared definition of precision medicine research as well as six case examples of precision medicine research involving genetic risk, pharmacogenetics, epigenetics, the microbiome, mobile health, and electronic health records were developed. Discussion/Conclusion: The precision medicine research definition and case examples can be used as planning tools to establish a shared understanding of the scope of precision medicine research across multidisciplinary teams and with the diverse communities in which precision medicine research will take place. This shared understanding is vital for successful and equitable progress in precision medicine.