4034.0 The black genome project: A community-based participatory ethnography towards more equitable genomics research

Session: Health Disparities in Genomics

Program: Genomics Forum

Time: 9:15 - 9:30 AM

Presenters:

Chelsey Carter, PhD, MPH

Devin Brown

Abstract

Background: The Black Genome Project (BGP) is an ethnographic community-based participatory research project that seeks to understand how genetic research impacts Black communities in St. Louis; and how Black communities value their genomes and genetic data. BGP and the non-profit, Black Girls Do STEM (BGDS), are collaborating toward building youth capacity and education towards this aim. Our collaboration intentionally engages young people in community building, research, and art.

Methods: Before data collection for the project began, BGP worked with BGDS founder, Cynthia Chappele, to design a collaborative research partnership. We launched our collaboration in July 2022 with an interactive field trip to the McDonnell Genome Institute. Here, more than 20 students and their parents engaged in cell culture, high-resolution microscopy, machine learning, and discussions about human genomics with a genetic disease carrier. 14 BGDS students became further involved in one of three phases of the research project and a book club.

Results: Students participated in 1) community engagement and recruitment, 2) ethnographic data collection and analysis, or 3) quantitative data analysis groups. These groups prioritized education, exposure, and a unique hands-on research experience. The book club read The Immortal Life of Henrietta Lacks, and our conversations evolved into generative open spaces for personal reflections and connections to the students’ lives.

Conclusions: BGDS continues to grow, and we hope our partnership with the initial cohort of students will create more opportunities for deeper engagement in genetic and public health research.