Julie A. Beans

• MPH
• Researcher at Southcentral Foundation

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...

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 t...

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 a...

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 Ar...

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...

Introduction: Alaska Native and American Indian (ANAI) people have a smoking prevalence of 23%. Nicotine metabolite ratio (NMR) and genetic testing may enable tailored selection of tobacco cessation medication. The purpose of this study was to evaluate the relative contributions of NMR, cessation medication, demographics, and tobacco use history t...

Genetic datasets lack diversity and include very few data from Indigenous populations. Research models based on equitable partnership have the potential to increase Indigenous participation and have led to successful collaborations. We report here on a meeting of participants in four Indigenous community-university partnerships pursuing research on...

Participant retention in longitudinal health research is necessary for generalizable results. Understanding factors that correlate with increased retention could improve retention in future studies. Here, we describe how participant and study process measures are associated with retention in a longitudinal tobacco cessation research study performed...

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 c...

Introduction: The American Indian/Alaska Native (AI/AN) suicide rate in Alaska is twice the state rate and four times the U.S. rate. Healthcare systems need innovative methods of suicide risk detection. The Mental Health Research Network (MHRN) developed suicide risk prediction algorithms in a general U.S. Patient population: Methods: We appli...

Introduction Data on cigarette smoking prevalence among Alaska Native and American Indian (ANAI) people are limited to cross-sectional studies or specific subpopulations. Using data from the Alaska Education and Research toward Health (EARTH) Study 10-year follow-up, this study assessed patterns of smoking from baseline and factors associated with...

Prevalence of smoking is higher in Alaska Native and American Indian (ANAI) populations living in Alaska than the general US population. Genetic factors contribute to smoking and cessation rates. The objective of this study was to compare CYP2A6 genetic variation and CYP2A6 enzyme activity toward nicotine in an ANAI population. ANAI (N = 151) peopl...

Objective To identify risk factors for postpartum hemorrhage in a population of Alaska Native women. Methods A case‐control study of 384 women (128 cases, 256 controls) delivering between August 1, 2018, and July 31, 2019, was conducted at a Level III maternal referral center for Alaska Native women in Alaska. Risk factors were assessed via retros...

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 ho...

The history of research in American Indian/Alaska Native (AI/AN) communities has been marked by unethical practices, resulting in mistrust and reluctance to participate in research. Harms are not limited to individual persons—tribal communities experience harmful misrepresentation and generalizations disrespectful of AI/AN groups’ heritage, culture...

Persistent, unresolved issues stemming from a legacy of scientific exploitation and bio-colonialism have kept many tribal nations from participating in genomic research. The Center for the Ethics of Indigenous Genomic Research (CEIGR) aims to model meaningful community engagement that moves toward more inclusive and equitable research practices rel...

Background and aims: Alaska Native (AN) traditional lifestyle may be protective against chronic disease risk. Weight gain in adulthood has been linked to increases in chronic disease risk among other populations; yet, its impact among Alaska Native people has never been evaluated. We aimed to evaluate changes in obesity-related metrics over time,...

Background: Precision medicine (PM) research and clinical application is moving forward at a rapid pace. To ensure ethical inclusion of all populations in PM, in-depth understanding of diverse communities' views of PM research and PM implementation is necessary. Methods: Semi-structured interviews were conducted to explore perspectives on PM in...

Background: Precision medicine seeks to better tailor medical care to the needs of individual patients, but there are challenges involved in communicating to patients, health care providers, and health system leaders about this novel and complex approach to research and clinical care. These challenges may be exacerbated for Alaska Native and Ameri...

Aims This study estimates incidence of diabetes (DM) and pre-DM relative to DM risk factors among relatively healthy Alaska Native and American Indian (henceforth AN) adults living in urban south central Alaska. Methods Baseline (2004-2006) and follow-up (2014-2017) surveys, blood samples, and medical chart review data were collected from AN adults...

Research has identified remarkably effective treatments for breast cancer, but translation of these results to all patients requires pharmacogenetic research using diverse patient populations. Although tamoxifen has been used to reduce the risk of breast cancer recurrence for the past 40 years, little is known about how well the drug works in Ameri...

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 p...

This study explored the lived experiences of suicidality and help-seeking for suicide prevention among Alaska Native and American Indian (AN/AI) people in a tribal health system. An interpretive phenomenological approach was used to analyze semi-structured, in-depth interviews with 15 individuals (ages 15–56) with self-reported histories of suicide...

Background: Multiple factors, including experiences with unethical research practices, have made some Indigenous groups in the United States and Canada reticent to participate in potentially beneficial health-related research. Yet, Indigenous peoples have also expressed a willingness to participate in research when certain conditions related to the...

Background: Alaska Native (AN) traditional foods and associated harvesting activities are beneficial to human health. Objective: This study assessed longitudinal self-reported traditional food use and harvesting activities among Alaska Native and American Indian (AN/AI) participants in the Alaska Education and Research Towards Health (EARTH) stu...

Longitudinal data are needed to investigate chronic disease causation and improve prevention efforts for Alaska Native and American Indian (ANAI) people. This paper describes the methods used to conduct follow-up data collection of a longitudinal cohort that enrolled ANAI adults between 2004 and 2006 in south central Alaska. The follow-up study re-...

Genomic research raises unique ethical concerns among Alaska Native and American Indian (AN/AI) people and their communities. The Center for the Ethics of Indigenous Genomic Research (CEIGR) was created to foster research that takes these concerns into account while considering the sovereign status of AN/AI tribal nations. Relationships developed w...

The authors wish to make the following change to their paper (Beans et al. 2019). The introduction under section 1.2 Research in US Tribal Context incorrectly references the University of Arizona where it should state Arizona State University. The correct version of section 1.2 Research in US Tribal Context is as follows: 1.2. Research in US Tribal...

Precision medicine initiatives, such as Cancer Breakthrough 2020, promise to improve cancer outcomes by tailoring treatment to an individual’s genes, environment, and lifestyle. This promise will fall short unless researchers successfully engage diverse communities, including those with histories of medical and research abuse. We examined a rural A...

Introduction: Alaska Native and American Indian (AN/AI) populations have higher tobacco use prevalence than other ethnic/racial groups. Pharmacogenetic (Pgx) testing to tailor tobacco cessation treatment may improve cessation rates. This study characterized polymorphic variations among AN/AI people in genes associated with metabolism of nicotine a...

Experiences with unethical research practices have caused some American Indian and Alaska Native (AIAN) individuals, organizations, and tribes to mistrust health research. To build trust and repair relationships, current research with AIAN peoples often involves participatory research (PR) approaches. This article assesses community-level protectio...

Supplementary Figure S1 Linkage disequilibrium pattern of CYP2D6 SNVs identified in the SCF population through resequencing. Each square represents the degree of linkage disequilibrium (LD) between a pair of SNVs: black represents complete linkage (r2 = 1.00); white represents no linkage (r2 = 0.00). Pairwise LD r2 values are indicated within each...

Supplementary Table S1 SNVs identified in CYP2D6 resequencing in 94 SCF subjects (n = 188 chromosomes)

Supplementary Table S2 CYP2D6 allele frequencies in SCF population by Fluidigm assay (n = 726 chromosomes)

Despite evidence that pharmacogenetics can improve tamoxifen pharmacotherapy, there are few studies with American Indian and Alaska Native (AIAN) people. We examined variation in cytochrome P450 (CYP) genes (CYP2D6, CYP3A4, CYP3A5, and CYP2C9) and tamoxifen biotransformation in AIAN patients with breast cancer (n = 42) from the Southcentral Foundat...

Alaska Native and American Indian (AN/AI) people experience a disproportionate burden of health disparities in the United States. Including AN/AI people in pharmacogenetic research offers an avenue to address these health disparities, however the dissemination of pharmacogenetic research results in the community context can be a challenging task. I...

Southcentral Foundation, a tribal health organization serving Alaska Native and American Indian (AN/AI) people in southcentral Alaska, convened the Alaska Native Health Research Forum (Forum) for AN/AI people in May 2016. The purpose of the Forum was to obtain AN/AI community member feedback about sharing health research results. This article descr...

In May 2016, Southcentral Foundation (SCF), a regional tribal health corporation based in Anchorage, Alaska convened a half-day health research forum for Alaska Native and American Indian community members to obtain feedback on communication of research findings. Thirty one individuals attended the Forum and 22 completed a pre and post survey. Resp...

Alaska Native (AN) and American Indian (AI) people are underrepresented in health research, yet many decline to participate in studies due to past researcher misconduct. Southcentral Foundation (SCF), an Alaska Native-owned and operated health care organization, is transforming the relationship between researchers and the tribal community by making...

Aim: Describe patients,' providers' and healthcare system leaders' perceptions of pharmacogenetic research to guide tobacco cessation treatment in an American Indian/Alaska Native primary care setting. Materials & methods: This qualitative study used semistructured interviews with 20 American Indian/Alaska Native current or former tobacco users,...

Background American Indian (AI) and Alaska Native (AN) communities confront some of the highest rates of tobacco use and its sequelae. Methods This formative research project sought to identify the perspectives of 41 stakeholders (community members receiving care within the healthcare system, primary care providers, and tribal healthcare system le...