Navigating the cultural geography of indigenous peoples’ attitude toward genetic research: the Ohana (family) heart project

Abstract

BackgroundLittle is known about the burden of heart failure among indigenous populations, including Native Hawaiians (NH). Recent concerns about genetic research in the NH community resonate with similar concerns raised by American Indian, Alaskan Native and Canadian First Nations communities and have raised questions about the best way to proceed with studies involving biological specimens.ObjectiveTo help us plan a study to investigate disparities in heart failure incidence and outcomes in a NH community, we performed a qualitative study to examine the community's expectations for heart failure research that includes the collection of biological specimens.MethodsEighty-five NH with a personal or family history of heart failure, who lived in a geographically isolated community in the state of Hawai‘i participated in 1 of 16 semi-structured interviews. Interviews were conducted in a standard manner, with open-ended questions designed to explore their expectations for a heart failure research study that included the collection of biological specimens. Interviews were analyzed thematically through iterative readings and coding. ResultsFour key themes regarding heart failure research with the use of biological specimens characterized their expectations: (a) Need to foster trust between investigator and community; (b) Establish a partnership with the community to identify needs and goals; (c) Need for mutual benefit to investigator and community; (d) Identification of a key voice to represent the community. Participants expressed strong support for research. However, the strength of that support was directly related to the strength of the relationship between the research team and the community. The collection of biological specimens for genetic analyses was not an explicit concern or barrier per se.ConclusionsIt appears feasible to conduct a heart failure research study that includes the collection of biological samples. However, success will likely require addressing the community's expectations, including the need for a long-term partnership built on trust and mutual benefit, and a key voice to represent the community.

Community-Based Participatory Research Integrates Behavioral and Biological Research to Achieve Health Equity for Native Hawaiians

“…We recommend special attention be paid to several aspects of the CBPR approach when proposing and conducting studies involving biospecimen collection and analyses. These recommendations are consistent with those presented by Vawer, et al [ 21 ] and Hiratsuka, et al [ 22 ].…”

Engaging Pacific Islanders in Research: Community Recommendations

“…23 Similar to the findings of other studies, communities desire for meaningful collaborations that are founded on trusting relationships, which require openness and honesty, the ability to listen well, continual communication, and the courage to directly address contentious issues as soon as possible. 9,10 Over the past decade, The Center has successfully developed extensive clinical and qualitative research collaborations with a third of the Ulu Network organizations. This achievement was established over time through continuous engagement in activities that facilitated co-learning, personal relationships, and organizational capacity-building.…”

“…4–8 Gaining a better understanding of how researcher capacity can be enhanced from community perspectives may help in more effectively addressing health disparities in minority communities. 9,10 …”

Best Practices for Community-Engaged Research with Pacific Islander Communities in the US and USAPI: A Scoping Review

“…Group engagement.-Over half (55%) of the articles discussed the importance of implementing research in group settings citing using focus group discussions and collecting data via surveys in groups as examples. [62][63][64]66,67,[70][71][72]74,[76][77][78][79][80][81][85][86][87][88]90,92,93,[95][96][97]99,100,102,104,106,108,109,112,113,116,119,121,124,125,127,134,144,145 Group engagement in study activities supported increased community and participant comfort with research activities and was described as reflective of Pacific Islander cultural values, yielding enhanced involvement from Pacific Islander participants. For example, Kagawa-Singer et al documented that Pacific Islander participants may be more comfortable providing information if friends from their community were allowed to participate as well.…”