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. A scoping review search in PubMed and PsychInfo for articles published between January 2000 and June 2017 yielded an AIAN PR article dataset. Of 178 articles, a subset of 23 articles that described aspects of community protections were analyzed for descriptions of community-level protection practices. We identified the presence or absence of a description of four community protection measures in each article: a tribal research department, the development of community-level mechanisms for research regulation if not present, community collaboration throughout the research process, and project employment of a community member. The development of community-level mechanisms for research regulation was described in 39% of the articles. Ninety-one percent of these articles described community collaboration during the research process. Seventeen percent included descriptions of all four community-level protection measures. The extent and consistency to which community-level protections are described is variable; the current literature lacks reporting on community-level protection practices specific to tribal communities.

A variety of forces are now shaping a passionate debate regarding the optimal approaches to improving the quality of substance abuse services for American Indian and Alaska Native communities. While there have been some highly successful efforts to meld the traditions of American Indian and Alaska Native tribes with that of 12-step approaches, some American Indian and Alaska Natives remain profoundly uncomfortable with the dominance of this Euro-American approach to substance abuse treatment in their communities. This longstanding tension has now been complicated by the emergence of a number of evidence-based treatments that, while holding promise for improving treatment for American Indian and Alaska Natives with substance use problems, may conflict with both American Indian and Alaska Native and 12-step healing traditions.

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.

Taeniasis and cysticercosis are two diseases caused by Taenia solium, a parasite transmitted between humans and pigs, leading to considerable economic loss and disabilities. Transmission of the parasite is linked to environmental and behavioural factors such as inadequate sanitation and hygiene, poor pig management, and consumption of infected pork. This study used implementation research method to design a health education intervention strategy for reducing T. solium infections in Burkina Faso, a country endemic for the parasite. Eighteen group discussions were conducted with 8–18 participants each in three villages. In addition, structured interviews were conducted among 4 777 participants and 2 244 pig owners, who were selected through cluster random sampling in 60 villages of three provinces of Burkina Faso. Both approaches assessed knowledge and practices related to T. solium. The information obtained was used to develop a community-adapted health education intervention strategy to control taeniasis and cysticercosis in Burkina Faso. The group discussions revealed that participants had a poor quality of life due to the diseases as well as inadequate access to latrines, safe water, and healthcare services. In addition, it was found that pig production was an important economic activity, especially for women. Furthermore, financial and knowledge constraints were important limitations to improved pig management and latrine construction. The survey data also showed that open defecation and drinking unboiled water were common behaviours, enhanced by a lack of knowledge regarding the transmission of the parasite, perceived financial barriers to the implementation of control measures, lack of public sensitization, as well as a lack of self-efficacy towards control of the parasite. Nevertheless, the perceived financial benefits of controlling porcine cysticercosis could be emphasized by an education program that discourages open defecation and encourages drinking safe water. The final intervention strategy included a Participatory Hygiene and Sanitation Transformation (PHAST) approach, as well as a 52-min film and an accompanying comic booklet. The main problem in the study communities regarding the transmission of T. solium cysticercosis is the random disposal of human faeces, which can be contaminated with parasite eggs. Prevention of open defecation requires the building of latrines, which can be quite problematic in economically challenged settings. Providing the community with the skills to construct durable latrines using low-cost locally available materials would likely help to resolve this problem. Further studies are required to implement and evaluate the T. solium control strategy developed in this study.

The American Cancer Society discourages the dual use of electronic cigarettes (ECs) and cigarettes because such use has not resulted in reduced exposures to the harmful effects of smoking. American Indian (AI) people have the highest prevalence of smoking and of EC use in the United States, but very little is known about dual EC and cigarette use in AI communities. In 2016, 375 adult AI in Oklahoma who smoked cigarettes completed a survey about EC use (vaping). We describe vaping patterns, nicotine dependence, and reasons for EC use among the subset of 44 (12%) current dual EC users. To differentiate habitual EC users from occasional or merely curious users, we defined dual use as using ECs on some days or every day in the past 30 days. About one-third of dual users vaped ten or more times daily. About two-thirds used a tank product. Eleven percent used ECs without nicotine and another 9% were unsure of the nicotine content. A minority (40%) enjoyed vaping more than smoking, and most (76%) would smoke first on days they did both. Thirty-one percent vaped within 5 min of waking and another 24% within 30 min. Although the two-item heaviness of use index did not differ significantly between smoking and vaping, the ten-item Penn State Dependence Index (PSDI) suggested greater dependence on smoking than vaping (11.02 vs. 6.42, respectively; p < .0001). The most common reasons for vaping were to reduce smoking (79%), enjoyment of flavors (78%), and ability to vape where smoking is not allowed (73%). Perceptions of less harm to others (69%) or to self were the next most common (65%). Fewer than half used ECs to reduce stress, for affordability, or because others used them. Nearly 20% of dual users used ECs either without nicotine or without knowing if the product contained nicotine. The PSDI indicated greater dependence on smoking than vaping. Reasons for vaping were nearly equal between smoking reduction and enjoying flavors. Understanding patterns of dual use will inform future efforts to address nicotine dependence for AI communities with high prevalence of smoking.

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. The structure of CEIGR represents an important shift away from a traditional model centered on a university-based principal investigators toward a partner-centered research approach that emphasizes equity and community control by distributing power and decision-making across all CEIGR partner sites. We discuss three features of CEIGR that have contributed to this shift towards an equitable, community-driven partnership: 1) balancing local priorities with collective goals; 2) distributing power in ways that promote equitable partnerships; and 3) capacity building and co-learning across partner sites. The discussion of these three areas in this article speaks to a particular strength of our Center: the interdependence among partners and collective willingness to maintain a plasticity of leadership that creates space for all of our partners to lead, support, exchange and strengthen ELSI research.