Center on the Ethics of Indigenous Genomic Research

NIH RePORTER · NIH · RM1 · $561,142 · view on reporter.nih.gov ↗

Abstract

Summary American Indian and Alaska Native (AI/AN) concerns about genomics are well documented but are too often left unaddressed. The failure to authentically engage AI/AN communities about their research priorities continues to compromise participation of Indigenous Americans in genomics and contributes to barriers that may still be resolved. There are substantial opportunities to change these dynamics by investing in community-led research on ethical, legal, and social implications, but this requires a concerted effort to build the infrastructure for this work, both in the academy and in the community. Since 2016, the Center for the Ethics of Indigenous Genomic Research (CEIGR) has established a consortium whereby Tribal research enterprises and community-based investigators, together with university research partners, jointly lead research that draws upon practices of community engagement, Indigenous research methods, and successful mentoring and training practices to continue addressing important and under-studied questions about genomic research among AI/AN people. Our Center continues to be at the forefront of advancing community-engaged scholarship in ethical, legal, and social implications research specifically, but also by the rapidly growing application of deliberative processes, to which we have made substantial contributions in the way of adapting deliberative approaches to AI/AN contexts. We are requesting a supplement as an extension with funds to finalize ongoing ELSI work of our Center addressing the following aims: SA1: To extend a network of AI/AN communities leading empirical ELSI research a) to advance dialogue on genomic research, biobanking, and data sharing, b) to stimulate work in new communities nationally through a pilot research program; SA2: To advance thinking about current ELSI concerns in AI/AN communities a) by working with community partners to identify unresolved ELSI questions b) by convening academic and community partners to advance scholarship in these areas; SA3: To train the next generation of leaders for AI/AN ELSI research a) through ongoing integration with the University of Oklahoma’s NHGRI Diversity Action Plan R25, b) through a postdoctoral fellowship program, c) through a program to develop and support community research leaders. Our Center’s empirical and normative efforts, combined with our model of partnership and respect for Tribal sovereignty, have produced resources, guidance, and a replicable approach to community engagement around ELSI issues in AI/AN contexts that continues to serve our collective efforts and others finding value in our approach.

Key facts

NIH application ID
11089166
Project number
3RM1HG009042-08S1
Recipient
UNIVERSITY OF OKLAHOMA
Principal Investigator
PAUL G SPICER
Activity code
RM1
Funding institute
NIH
Fiscal year
2024
Award amount
$561,142
Award type
3
Project period
2024-09-24 → 2026-06-30