Friday, November 22, 2024
11/22/2024
PROJECT SUMMARY/ABSTRACT Due to underrepresentation in genetic studies and reference panels, the promise of precision medicine for early detection, targeted treatment, and improved outcomes has not been achieved universally across racial and ethnic groups, especially in the Pacific Islander population. Moreover, the Pacific Islander community’s beliefs and attitudes about genetic testing, including culturally appropriate ways of receiving and sharing genetic testing results, have not been fully explored. While genetic research involving Pacific Islanders is still in its early stages, establishing trust is crucial to ensuring that current and future genetic research offers tangible benefits to this community. Forming partnerships between the Pacific Islander community and academic researchers, promoting open dialogues, and providing community-supported guidelines are key to building trust and enriching future genetic research. The Moana Project is dedicated to fostering community engagement and dialogue about genetic research within the Pacific Islander community (which includes Native Hawaiians, Samoans, Tongans, Other Polynesians, Micronesians, and Melanesians). Our objective is to facilitate the formation of community- led best-practice guidelines and restrictions for future genetic research projects in this community. To accomplish this, we will first establish a partnership between the Pacific Islander community and academic researchers through engagement, dialogue, and consultation around genetic research. This will be done by creating partnerships with the Utah Pacific Islander Health Coalition and other Pacific Islander community leaders. These leaders will be interviewed to obtain their insights into the project and perspectives on genetic research in their communities. This partnership will help establish connections for engagement sessions of Pacific Islander community members to determine their thoughts, feelings, and concerns about genetic research. The Pacific Islander community represents an amalgamation of different ancestry and cultures and we will seek to capture this wider range of voices by doing sessions in different groups. Simultaneously, we will conduct an engagement session with academic genetic researchers to ensure their perspectives are included. Based on these interviews and sessions, we will conduct community dialogue events involving both the Pacific Islander community and academic researchers. These events will endeavor to promote mutual learning, answer questions, and build relationships based on trust. The Moana Project investigational team, in partnership with the Utah Pacific Islander Health Coalition, will meet regularly to discuss the resulting themes from the interviews and engagement sessions. We will do literature reviews of these themes to determine best practices. These will be used to develop guidelines and restrictions for genetic studies involving Pacific Islander communities. This document will be presented at a community consultation meeting and revised based on feedback. The outcome of this project will establish guidelines for ethical genetic research in the Pacific Islander community that will serve as a foundation for future genetic research, with the ultimate goal of bettering the health of this community.
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