Assessing the Bioethical Impacts of an Indigenous Scholars Network in Genomics

Coincident with this training has been the production of ethical frameworks for the scientific community to reference when working with Indigenous communities and influential scholarship, for example, ancient human ancestry research focused on changing the practice of scientific collaboration with Indigenous communities as the core focus of research.

Recognizing that genomic research is inherent in future medical, scientific and translational research, the inclusion and involvement of Indigenous peoples is important and the role of SING to facilitate this engagement, unparalleled. We seek to objectively measure the impact of the SING program by eliciting the perceptions and understandings of genomic science and ethics engagement of past SING participants and faculty members through focus groups, surveys, and social network analysis. These findings will inform in-person training to impact research approaches, scholarship, and public policy.

Our research aims are to:
• Elucidate Indigenous perspectives on genetic research and scholarship;
• Define SING interactions and influences on Indigenous genomics scholars; and
• Develop and deliver topic specific training to the general public and SING alumni.

Intellectual Merit
The proposed project will examine the intersection of ethics, culture, and professionalism for Indigenous geneticists, allies, and scientists who engage Indigenous peoples in research. A quantifiable analysis of impact on a training workshop such as SING has not been largely undertaken and will provide guidance as to the effectiveness of such programs and ways to increase their value by enhancing areas of strength and identifying those of weakness.

Broader Impacts
Indigenous peoples are the most underrepresented group in genomics research. While the numbers of Indigenous peoples with graduate-level training in geneticists and related fields is unknown, we have seen an increase in members in academia and in professional societies. The proposed project will explore relationships and networks created by Indigenous scientists, the impact of the SING program, and how these relationships have allowed us to explore and shape discussions of ethical genetic research practices with Indigenous peoples.

Leadership

Matt Anderson
Associate Professor, Dept. of Microbiology and the Dept. of Microbial Infection and Immunity
Ohio State University

Nanibaa' Garrison
Associate Professor, Institute for Society and Genetics
UCLA

Katrina Claw
Assistant Professor, Dept. of Biomedical Informatics
University of Colorado Anschutz Medical Campus

Alyssa Bader
Assistant Professor, Dept. of Anthropology
McGill University

Rene Begay
University of Colorado Anschutz Medical Campus

Jerreed Ivanich
Assistant Professor, Centers for American Indian and Alaska Native Health, Department of Community and Behavioral Health
University of Colorado Anschutz Medical Campus

Ripan Malhi
Professor, Department of Anthropology
University of Illinois

Francine Gachupin
Associate Professor, Dept. of Family and Community Medicine
University of Arizona
Desi Small-Rodriguez, Assistant Professor, Dept. of Sociology, UCLA

Funding

NSF ER2 grant

Recipient Institution 

UCLA and Ohio State University

Start and End Date

10/01/2021 - 09/30/2026

Contact Information

Matt Anderson
anderson.3196@osu.edu
614-247-0058

Nanibaa' Garrison
nanibaa@socgen.ucla.edu