Partnership To Support Indigenous-driven Genomic Research

About This Grant

Southcentral Foundation’s (SCF) proposed Building Partnerships and Broadening Perspectives to Advance Ethical, Legal, and Social Implications (BBAER) Program will extend meaningful collaboration with American Indian and Alaska Native (AI/AN) communities and AI/AN-serving health systems in Alaska and Oklahoma with the overall aim of promoting Tribally-defined approaches toward genomic research with high impact.  As sovereign Nations, Tribes have the right to oversee research with their citizens. To address AI/AN health disparities, genomic research – whether at the community level or via large repositories with data and biological specimens from AI/AN people from a multitude of Tribes – must be conducted from an approach defined by AI/AN communities and led by and in partnership with AI/AN people. SCF is a Tribally-owned and operated healthcare organization and provides services to more than 70,000 AI/AN people in southcentral Alaska. SCF researchers have led inquiry into the ethical conduct of genomic research with AI/AN people since 2006. Engaging AI/AN Tribal leadership to assess interest in pursuing genomics has been central to SCF’s empiric efforts. SCF researchers Dr. Vanessa Hiratsuka and Ms. Julie Beans will lead this effort and extend their experience in creating meaningful dialogues with AI/AN communities about community benefit and impact of genomics. Our BBAER Program will leverage long-term partnerships with Dr. Jessica Blanchard at the University of Oklahoma and Dr. Susan Trinidad at the University of Washington to achieve the following specific aims: (1) We will develop SCF’s community-driven ELSI research vision and strategic management approach; (2) We will identify and evaluate the impacts of approaches used to include AI/AN people and communities in genomic research through document analysis and discourse tracing, describe Tribal citizens’ perspectives of genomic research using focus groups in Alaska and Oklahoma, and explore Tribal leaders’ experiences and expectations for how to achieve high impact and maximize benefit in genomic research using public deliberation in Alaska and Oklahoma; (3) Working with AI/AN community members and experts, Tribal leaders, and NIH program staff, we will develop and implement tools and methods to promote and assess our progress toward meaningful collaboration and team science in Indigenous-driven genomic research through the lenses of relational accountability and transformative agency; (4) We will use the Research and Evaluation Capacity Assessment Tool and Resource Package (RECAP) to identify research capacity building needs and implement annual work plans, personnel development and distribution of resources to support long-term maintenance of an SCF ELSI research agenda; and (5) We will train the next generation of early career scholars in AI/AN ELSI through mentored research experiences in partnership with AI/AN people and communities. Accomplishing BBAER activities will further establish SCF as a national leader in normative and empiric ELSI research of importance to AI/AN communities.