An Alaska Native community’s views on genetic research, testing, and return of results: Results from a public deliberation

Abstract

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. Participants emphasized the need for a balance between the potential for genetics research, testing, and return of results to empower individuals and improve health with the potential to expose individuals and communities to privacy breaches, discrimination, and emotional harms. Public deliberation was well received by this group of participants and elicited rich discussion on the complex topic 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

“…Since its inception, CEIGR has sought to develop research initiatives, some described below, that are inclusive of community-based investigators and prioritize community-driven initiatives ( Woodbury et al, 2019a ; Hiratsuka et al, 2020a ; Reedy et al, 2020b ). Establishing a partner-centered research agenda required identification of collective goals that could be implemented in three distinct AI/AN communities that varied widely in their geographies, cultures, histories, and research capacities.…”

“…A goal of CEIGR was to conduct public deliberations in three tribal communities on genetic research ( Hiratsuka et al, 2019 , see also Hiratsuka et al, 2020a and Reedy et al, 2020b ). To achieve this goal, it was necessary to engage in a multi-year process of building relationships between the University staff and community sites, working towards a consensus on the appropriateness of deliberation as a form of engagement in each respective community, and developing an approach to how this work could be conducted with a common goal.…”

“…As mentioned above, a goal of the Center was always to conduct public deliberations on genetic research across all of our partner sites. The scholarship on public deliberation suggests it is a particularly promising approach for promoting deeper discussions around complex issues like genetics research and advancing public deliberation in AI/AN communities has been and continues to be a major focus of the Center ( Hiratsuka et al, 2020a ; see also Reedy et al, 2020b ). There was an understanding that the Center’s effort to facilitate these deliberations was happening across diverse tribal settings, each with their own goals for public deliberation.…”

“…To date, we have completed deliberations at each of our three community partner sites ( Hiratsuka et al 2020a , Reedy et al, 2020b ). The truly unique feature of our deliberations, aside from being conducted in exclusively tribal contexts with AI/AN participants, is that they were designed around the questions, priorities, and social dynamics associated with each community site.…”

“…For instance, SCF had been involved in pharmacogenetic research for a number of years ( Hiratsuka et al, 2020b ), with several research projects exploring AI/AN views on biological specimen use ( Hiratsuka et al, 2012a , Hiratsuka et al, 2012b , Dirks et al, 2019 ) and preferences for the conduct of pharmacogenetic research ( Avey et al, 2016 ; Beans et al, 2020 ; Shaw et al, 2013 ). The questions of interest for this site were therefore focused on community preferences for return of results from genomic research ( Hiratsuka et al, 2020a ) as the site was conducting pharmacogenetic research projects and was seeking to improve understanding of community preferences for dissemination of findings. The CN, on the other hand, was beginning to think about the role of genetic research for its own community.…”