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-examined ANAI participants in a large, urban centre in south central Alaska between 2015 and 2017. Computerized surveys were used to collect self-reported health, lifestyle, physical activity, and diet data. Clinical measurements included blood pressure, fasting blood glucose and lipid panel, urine albumin/creatinine, height, weight, and waist and hip circumference. Participants were provided individual results at the conclusion of their visit. A total of 1320 south central Alaska study participants completed the baseline visit. Study staff attempted to contact all living cohort members for inclusion in the follow-up study. More than 11,000 attempted contacts were made. Of the 637 available for participation, 388 completed the follow-up visit. The proportion of women increased from baseline to follow-up examinations (67 vs. 72%, p < 0.01). Self-reported health status of being married or living as married (46% vs. 39%, p < 0.01), and those reporting being employed or self-employed (55% vs. 47%, p < 0.01) were higher at follow-up when compared to baseline. Almost all participants at follow-up (97%) agreed to long-term storage of biological specimens for future study. Despite demographic differences between the follow-up and baseline cohorts, longitudinal data collected will provide novel insight on chronic disease development and prevention for ANAI people as well as other populations.
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. The goal of the meeting was to define values and practices that strengthen opportunities for genetic research. The group accorded the highest priority to developing trusting relationships, ensuring respect for Indigenous community authority, and pursuing research that has the potential to lead to community benefit. Supporting priorities included incorporation of Indigenous expertise in research planning, transparent communication, and development of community capacity, including capacity to participate in formulating research questions, informing research methodology, and leading research projects. Participants also noted the importance of attention to social determinants of health so that genetic contributors to health are evaluated in the appropriate context.
A scoping review was conducted to assess the state of the literature on health-related participatory research involving American Indian and Alaska Native communities. Online databases were searched for relevant articles published between 1/1/2000 and 5/31/2017. 10,000+ data points relevant to community-level engagement in and regulation of research, community research capacity and cultural adaptation were extracted from 178 articles. Community engagement varied across study components: 136 (76%) articles reported community participation in research-related meetings and other events and 49 (27%) articles reported community involvement in initiation of research. 156 (88%) articles reported use of community-level tools to guide or regulate research. 93 (52%) articles reported that community members received research-related training. 147 (82%) articles described some type of cultural adaptation. Across all articles, data points on community engagement were not reported in 3061 (40%) out of 7740 cases. Findings suggest a need for increased community engagement in early stages of the research process and for reporting guidelines for participatory research involving American Indian and Alaska Native communities. There is also need to further existing research on the impact of different components of participatory research on process and outcome measures and to develop funding mechanisms that account for the time and resource intensive nature of participatory 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. The CEIGR framework may inform other groups seeking to conduct social science research related to genomic research with tribal people and their communities.
American Indian/Alaska Native (AI/AN) children have a prevalence rate of early childhood caries 5 times that of the overall US population. Oral hygiene and oral health beliefs have not been described among AI/AN parents. This study explored constructs of the health belief model informing oral health beliefs and oral hygiene behaviours of parents of AI/AN children ages 0-6 years. The study aimed to determine the toothbrushing behaviour in parents of AI/AN childrenand the relationship between parent oral health beliefs and toothbrushing frequency.A cross-sectional survey which included the Oral Hygiene Scale, Oral Health Belief Questionnaire and the Early Childhood Oral Health Impact Scale was administered to a convenience sample of parents of AI/AN children 71 months or younger attending outpatient paediatric primary care appointments (N=100). Analyses were conducted to determine parent toothbrushing and the relationship between parent health beliefs and child toothbrushing.The odds of regular child toothbrushing were 49.10 times higher when the parent brushed their own teeth regularly (confidence interval (CI)=11.46–188.14; p<0.001). Parental toothbrushing had a strong positive association with the belief that oral health is as important as physical health.This research endorses parent-focused toothbrushing interventions to reduce AI/AN early childhood caries rates.
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.
Indigenous Peoples are reimagining their relationship with research and researchers through greater self-determination and involvement in research governance. The emerging discourse around Indigenous Data Sovereignty has provoked discussions about decolonizing data practices and highlighted the importance of Indigenous Data Governance to support Indigenous decision-making and control of data. Given that much data are generated from research, Indigenous research governance and Indigenous Data Governance overlap. In this paper, we broaden the concept of Indigenous Data Sovereignty by using the CARE Principles for Indigenous Data Governance to discuss how research legislation and policy adopted by Indigenous Peoples in the US set expectations around recognizing sovereign relationships, acknowledging rights and interests in data, and enabling Indigenous Peoples' participation in research governance.
The prevalence of smoking during pregnancy for Alaska Native (AN) women is more than triple that of non-Native Alaska women. In this qualitative study, we solicited input from AN women and others to determine how best to present findings from an earlier study demonstrating a strong correlation between biomarkers for maternal smoking (cotinine) and neonatal exposure to a tobacco-specific carcinogen 4-(methylnitrosamino)-1-(3-pyridyl)-1-butanol (NNAL) to motivate cessation.
