NIH grant advances Indigenous-driven genomic research in Alaska and Oklahoma

A transdisciplinary team led by Southcentral Foundation, a Tribal healthcare organization in Anchorage, Alaska, has been awarded a competitive grant from the National Institutes of Health. Jessica Blanchard, Ph.D., senior research scientist at the University of Oklahoma's Center for Applied Social Research, is a key collaborator on the project, representing the continuation of a longstanding partnership between OU and Southcentral Foundation.

Administered by the National Human Genome Research Institute, the award is funded under the Building Partnerships and Broadening Perspectives to Advance Ethical, Legal, and Social Implications (ELSI) Research (BBAER) Program. The newly funded initiative, Partnerships for Indigenous-led ELSI Research, or PIER, is guided by an all-Indigenous leadership team: Vanessa Hiratsuka, Ph.D. (Diné/Wintu), and Julie Beans, MPH (Yup'ik/Oneida) of Southcentral Foundation. Additional collaboration comes from Blanchard, Susan Trinidad, Ph.D. (University of Washington), and Evan White, Ph.D. (Absentee Shawnee; Laureate Institute for Brain Research). The team has a track record of excellence in American Indian and Alaska Native (AI/AN) community engagement practices that promote research driven by community priorities and values.

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 - will be conducted from an approach defined by AI/AN communities and led by and in partnership with AI/AN people. PIER will strengthen meaningful collaboration with AI/AN communities and AI/AN-serving health systems in Alaska and Oklahoma with the overall aim of promoting Indigenous-driven approaches to genomic research.

Oftentimes, Tribes are asked to participate in research as partners to universities, and that's great when the partnership meets their needs. But this newly funded work is different in that it is not just tribally-partnered research; it is tribally-led. This grant provides the resources and the time for Southcentral Foundation to determine what kind of research they would like to see happening in service of their communities."

Jessica Blanchard, Ph.D., senior research scientist, University of Oklahoma's Center for Applied Social Research

Among the key initiatives the team excited to announce is a Community Scholars program to support researchers of all career levels interested in pursuing Tribal health research. Those selected as community scholars will join the team and participate in PIER initiatives over the coming years. Calls for applications will be released in February.

The hope for the PIER program is to support research capacity and workforce development at Southcentral Foundation, while promoting Tribally-defined approaches in genomic research that may be useful to Tribal communities across the nation. "This award represents the continuing evolution of work on the ethical, legal and social implications of genomics for American Indian and Alaska Native people and communities we launched as part of the Center for the Ethics of Indigenous Genomic Research in 2016," said OU Paul Spicer, Ph.D., director of the Center for Applied Social Research. "Having our colleagues at Southcentral Foundation take the lead on this project is an overdue but welcome next step. I cannot wait to see where this leads."