Leveraging community-based participatory research capacity to recruit Pacific Islanders into a genetics study

Abstract

Pacific Islanders face many health disparities, including higher rates of cardiovascular disease, cancer, obesity, and diabetes compared to other racial and ethnic groups. Specifically, the Marshallese population suffers disproportionately from type 2 diabetes, with rates 400% higher than the general US population. As part of an ongoing community-based participatory research (CBPR) partnership, 148 participants were recruited for a study examining genetic variants to better understand diabetes. Participants provided a saliva specimen in an Oragene® DNA self-collection kit. Each participant provided approximately 2 mL volume of saliva and was asked qualitative questions about their experience. The study yielded a recruitment rate of 95.5%. Among the 148 persons who participated, 143 (96.6%) agreed to be contacted for future studies; 142 (95.9%) agreed to have their samples used for future IRB-approved studies; and 144 (97.3%) gave permission for the researchers to link information from this study to other studies in which they had participated. Qualitative responses showed that the majority of participants were willing to participate because of their desire to contribute to the health of their community and to understand the genetic influence related to diabetes. This study demonstrates willingness to participate in genetic research among Marshallese living in Arkansas. Willingness was likely enhanced because the feasibility study was part of a larger CBPR effort. This study is important to community stakeholders who have voiced a desire to collaboratively conduct genetic research related to diabetes, perinatal outcomes, and cancer.

Health Research Participation, Opportunity, and Willingness Among Minority and Rural Communities of Arkansas

“…9,[27][28][29][30][31][32][33][34][35][36] However, the findings are consistent with a small number of more recent studies that document a willingness to participate among racial and ethnic minorities. [37][38][39] This study adds to the growing body of literature suggesting barriers beyond willingness. [37][38][39] Specifically, the paradoxical findings of this study, which showed no difference in the participation rates of racial/ethnic minorities, yet also showed racial/ethnic minorities report both more opportunity and more willingness, needs further exploration.…”

“…[37][38][39] This study adds to the growing body of literature suggesting barriers beyond willingness. [37][38][39] Specifically, the paradoxical findings of this study, which showed no difference in the participation rates of racial/ethnic minorities, yet also showed racial/ethnic minorities report both more opportunity and more willingness, needs further exploration.…”

Genuine participation in participant-centred research initiatives: the rhetoric and the potential reality

“…When it was not possible to raise a consensus, the situation was outlined, and the main opinions and reasons for disagreement were analysed and subjected to posterior reflection. Importantly, this has not just been a one-off, or sporadic, exercise and similar examples of deliberative community engagement can increasingly be noted in a global context, for instance, in the cases of the University of California biorepositories, the Mayo Clinic Biobank and community-based participatory research partnerships such as recently reported research involving Pacific Islanders as research collaborators (Dry et al 2017 ; Olson et al 2013 ; McElfish et al 2017 ).…”

Using the diffusion of innovations model to guide participant engagement in the genomics era

“…For individuals with a suspected genetic condition, participation in EGS research may be seen as a "last frontier" that enables families to feel that everything possible to find a diagnosis has been done (Halverson, Clift, & McCormick, 2016). This characteristic of EGS may be perceived as a relative ad- ing Pacific Islanders living in Arkansas utilized CBPR approaches to identify diabetes as a common and substantial problem among the population, and achieved a 95% recruitment rate for a study focused on its genetic etiology (McElfish et al, 2017). Participants in that project emphasized that they were more willing to participate, even in intensive projects, if the topic was relevant to them.…”