Use of Cognitive Interviews in the Development of a Survey Assessing American Indian and Alaska Native Adult Perspectives on Genetics and Biological Specimens.

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.

Evidence-based screening, clinical care and health education recommendations for Alaska Native peoples with prediabetes living in southcentral Alaska: findings from the Alaska EARTH follow-up study.

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.

The CPT1A Arctic variant: perspectives of community members and providers in two Alaska tribal health settings.

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.

Cancer Screening Prevalence among Participants in the Southcentral Alaska Education and Research towards Health (EARTH) Study at Baseline and Follow-Up.

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.

Identification of Sociodemographic, Clinical, and Genetic Factors to Aid Alaska Native and American Indian People to Successfully Quit Smoking.

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.

Aims And Methods: The purpose of this study was to evaluate the relative contributions of NMR, cessation medication, demographics, and tobacco use history to cessation.

Values and Practices to Strengthen Genetic Research Partnerships with Indigenous Communities.

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 precision medicine.

Retention in a 6-Month Smoking Cessation Study Among Alaska Native and American Indian People.

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 in Anchorage, Alaska.

Smoking Patterns Among Urban Alaska Native and American Indian Adults: The Alaska EARTH 10-Year Follow-up Study.

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 current use.

Aims And Methods: EARTH Study urban south central ANAI participants (N = 376; 73% women) provided questionnaire data on smoking at baseline and 10-year follow-up.

Nicotine metabolism and its association with CYP2A6 genotype among Indigenous people in Alaska who smoke.

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.

Postpartum hemorrhage: Moving from response to prevention for Alaska Native mothers.

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 retrospective chart review, and bivariate and conditional regression analyses were conducted to determine odds ratios (ORs) between women with and without postpartum hemorrhage.

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.

Community Perspectives on Communicating About Precision Medicine in an Alaska Native Tribal Health Care System.

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 American Indian (ANAI) people, whose experiences of unethical research practices have left some ANAI communities hesitant to engage in research that involves extensive data-sharing and diminished control over the terms of data management and who may have distinct, culturally-informed communication needs and preferences. There is need for communication research to support Tribal health organizations and ANAI people as they consider implementation of and participation in precision medicine.

Extending Research Protections to Tribal Communities.

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, cultures, and beliefs. The Belmont Report's research ethics principles are applied primarily to protect individual research participants.

Ten-year weight gain is not associated with multiple cardiometabolic measures in Alaska EARTH study participants.

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, and determine associations of changes with cardiometabolic markers of chronic disease risk among AN people.

Perspectives on Precision Medicine in a Tribally Managed Primary Care Setting.

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 a tribally managed healthcare organization.

Increase in diabetes among urban Alaska Native people in the Alaska EARTH follow-up study: A call for prediabetes screening, diagnosis, and referral for intervention.

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 living in south central Alaska. We analyzed associations between prevalent risk factors and incident DM and pre-DM using Cox proportional hazards and used multivariable models to identify independent predictors for both DM and pre-DM.

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.

Power Sharing, Capacity Building, and Evolving Roles in ELSI: The Center for the Ethics of Indigenous Genomic Research.

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 related to genomics. This article reflects on key successes and challenges behind CEIGR's efforts to shape Ethical, Legal and Social Implications (ELSI) research in ways that are informed by Indigenous perspectives, to locate community partnerships at the center of genomics research, and to conduct normative and empirical research with Indigenous communities that is grounded in the concepts of reciprocity, transparency and cultural competency.

Alaska Native Traditional Food and Harvesting Activity Patterns over 10 Years of Follow-Up.

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) study.

Methods: In 2004-2006, southcentral Alaska EARTH study participants ( = 1320) completed diet and activity questionnaires which were repeated in 2015-2017; results were compared between participants who completed both questionnaires ( = 388).

Data Management in Health-Related Research Involving Indigenous Communities in the United States and Canada: A Scoping Review.

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 components of data management-including data collection, analysis, security and storage, sharing, dissemination, and withdrawal-are met. A scoping review was conducted to better understand the terms of data management employed in health-related research involving Indigenous communities in the United States and Canada.

Fostering Ethical, Legal, and Social Implications Research in Tribal Communities: The Center for the Ethics of Indigenous Genomic Research.

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 within CEIGR have allowed for effective, collaborative research among individuals who come from diverse cultures, political and historical backgrounds, and academic disciplines, and who work for organizations with varying resources, capacities, and expectations.

Community Protections in American Indian and Alaska Native Participatory Research-A Scoping Review.

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 protections described in the scientific literature on PR involving AIAN communities.