Since the first European settlers arrived in the Americas, American Indian and Alaskan Native people have suffered from devastating diseases, violence, and genocide. During the conquest of...

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.Methods We adapted democratic deliberation, an approach to stakeholder engagement, for use with (...) three tribal communities to respect tribal values and customs. Public deliberation convenes people from diverse backgrounds in reasoned reflection and dialogue in search of collective solutions. The deliberation planning process and design were informed by frameworks of enclave deliberation and community-based participatory research, which share key egalitarian values. The deliberations were collaboratively designed with tribal leadership and extensive partner input and involvement in the deliberations. Each deliberation posed different, locally relevant questions about genomic research, but used the same deliberation structure and measures to gauge the quality and experience of deliberation.Results A total of 52 individuals participated in the deliberations across all three sites. Deliberants were balanced in gender, spanned decades in age, and were diverse in educational attainment and exposure to health research. Overall, the deliberations were positively evaluated. Participant perceptions and external observer datasets depict three deliberations that offered intensive conversation experiences in which participants learned from one another, reported feeling respected and connected to one another, and endorsed this intensive form of engagement.Conclusion The adapted deliberations achieved key deliberative goals and were generally well received. Limitations of the study are described. (shrink)

This special issue addresses the legacy of the U.S. Public Health Service Syphilis Study on health reform, particularly the Affordable Care Act. This article offers readers a guide to the themes that emerge in this issue. These themes include individual consent interrelated to consequences in populations issues, need for better government oversight in research and health care, and the need for overhauling our bioethics training to develop a population-level, culturally driven approach to research bioethics. We hope the guidance offered in (...) this issue will help shape a new framework to bioethics that can be integrated into the foundation of health care reform. (shrink)

Public engagement is one of the fundamental pillars of the European programme for research and innovation _Horizon 2020_. The programme encourages engagement that not only fosters science education and dissemination, but also promotes two-way dialogues between scientists and the public at various stages of research. Establishing such dialogues between different groups of societal actors is seen as crucial in order to attain epistemic as well as social desiderata at the intersection between science and society. However, whether these dialogues can actually (...) help attaining these desiderata is far from obvious. This paper discusses some of the costs, risks, and benefits of dialogical public engagement practices, and proposes a strategy to analyse these argumentative practices based on a three-tiered model of epistemic exchange. As a case study, we discuss the phenomenon of vaccine hesitancy, arguably a result of suboptimal public engagement, and show how the proposed model can shed new light on the problem. (shrink)

Saunkeah et al. argue convincingly that although respect for Tribal sovereignty is often invoked as a core justification for Tribal research protections, an expanded ethical framework is req...

Sharply in focus in the United States right now is the disproportionate COVID‐19 infection, hospitalization, and mortality rates of Black, Indigenous, Hispanic, and Pacific Islanders living in the United States in contrast to White people. These COVID‐19 disparities are but one example of how systemic racism filters into health outcomes for many Black, Indigenous, and other People of Color (BIPOC). With these issues front and center, more attention is being given to the ways that White medical professionals contribute to these (...) disparities, including their socialization to ignore or deny inequities. As such, the present study sought to understand how educating White health‐care pre‐professionals about systemic racism might influence their understanding of and responsibility for disrupting White supremacy. Data were drawn from 49 White‐identified nursing students who participated in a mapping project that uncovered instantiations of systemic racism in the United States. Participant written reflections were analyzed using thematic analysis. Findings revealed that mapping projects can develop White people's knowledge and understanding of systemic racism. We introduce the construct, transformative dissonant encounters, to describe how this project precipitated shifts in world view necessary for White people to confront systemic racism. Implications for nursing educators, psychological researchers, and antiracist activists are discussed. (shrink)

This article demonstrates how researchers from both the sciences and the humanities can learn from Charles Darwin’s mixed methodology. We identify two basic challenges that face emotion research in the sciences, namely a mismatch between experiment design and the complexity of life that we aim to explain, and problematic efforts to bridge the gap, including invalid inferences from constrained study designs, and equivocal use of terms like “sympathy” and “empathy” that poorly reflect such methodological constraints. We argue that Darwin’s mixed (...) methodology is a model for addressing these challenges even in laboratory work on emotion, because it shows how close observation of emotional phenomena makes sense only within broader historical contexts. The article concludes with 5 practical research recommendations. (shrink)

Governments are investing in precision medicine with the aim of improving healthcare through the use of genomic analyses and data analytics to develop tailored treatment approaches for individual patients. The success of PM is contingent upon clear public communications that engender trust and secure the social licence to collect and share large population-wide data sets because specific consent for each data re-use is impractical. Variation in the terminology used by different programmes used to describe PM may hinder clear communication and (...) threaten trust. Language is used to create common understanding and expectations regarding precision medicine between researchers, clinicians and the volunteers. There is a need to better understand public interpretations of PM-related terminology. This paper reports on a qualitative study involving 24 focus group participants in the multi-lingual context of Singapore. The study explored how Singaporeans interpret and understand the terms ‘precision medicine’ and ‘personalised medicine’, and which term they felt more aptly communicates the concept and goals of PM. Results suggest that participants were unable to readily link the terms with this area of medicine and initially displayed preferences for the more familiar term of ‘personalised’. The use of visual aids to convey key concepts resonated with participants, some of whom then indicated preferences for the term ‘precision’ as being a more accurate description of PM research. These aids helped to facilitate dialogue around the ethical and social value, as well as the risks, of PM. Implications for programme developers and policy makers are discussed. (shrink)

Background: Research must respect ethical norms and informed consent, with appropriate cultural adaptation and verification of its understanding in indigenous communities of the Andean and Amazonian regions, including social and medical research. Objective: Determine to what extent IC is understood in an Aymara community in Peru, specifically as concerns a school nutrition project. Methodology: A prospective, quasi-experimental field study of an educational intervention was conducted in Puno during 2015. The objectives and procedures of the school nutrition project in question were (...) explained to the local Aymara leaders, and a questionnaire was prepared on knowledge and practices regarding healthy lunch boxes for Aymara children. An educational nutrition program and two IC formats were drawn up. The documentation was evaluated by a research ethics committee. Results: Seventy Aymara villagers participated in the research project. The extent to which they understood the IC was modified to a statistically significant degree subsequent to the educational intervention and adaption for cultural appropriateness. (shrink)

The history of research in American Indian/Alaska Native communities has been marked by unethical practices, resulting in mistrust and reluctance to participate in research. Harms are not l...

The inclusion of stakeholders and knowledge systems is increasingly valued in research to address complex socio-ecological challenges around the world. Often these projects take place in cross-cultural setting where external researchers risk perpetuating historically extractive research models that not only harm local communities but damage the validity of research projects. Responsible community engagement is increasingly recognized as a practice that can improve researcher-community relationships and research quality by incorporating principles of ethics, reciprocity, and power sharing. In partnership with local community (...) leaders, researchers from a U.S. university coded 76 research articles for indicators of responsible community engagement conducted in the Samburu, Kenya community since 2000. Findings from this study suggest that most of the research in Samburu has followed extractive models. Of the 76 articles reviewed many failed to acknowledge ethical protocols, did not address relevance of the study to the local community, and did not report any indication of outreach or community change as a result of the research. While a portion of articles showed evidence of community involvement in the studies, the involvement was primarily limited to secondary roles with little to no shared decision-making power over the research process. We discuss methodological considerations for future research and steps that must be taken in order to shift the norm and practice of academic research in sites such as Samburu, Kenya. (shrink)