Three years ago, we met as virtual colleagues on a project to understand the extent of COVID-19 infections in the St. Louis region.
Dr. Maricque, then a new faculty member at the Washington University School of Medicine (WUSM), was a researcher and site coordinator, and Dr. Carter served as a project phlebotomist while completing her dissertation on race and ALS at Washington University.
After the project concluded and as the pandemic progressed, we met in person outside at a picnic table in the cold to discuss genetics, race, and racism.
Dr. Chelsey would join the faculty at Yale School of Public Health, and our continued conversations led to the creation of the Black Genome Project (BGP).
BGP is a community-based research project that seeks to better understand how Black St. Louisans are impacted by genetics research and to center the voices of Black communities in conversations about the future of genomics and precision medicine.
Genomics studies an individual’s complete set of genetic material, stored in DNA, half of it inherited from each of their parents. The field of precision medicine aims to tailor healthcare to individuals based on their unique genetics, environments, and health behaviors.
As precision medicine becomes more common and its implications for Black and Brown communities become more significant, it is critical that our approaches are rooted in equity. Part of any equity-centered community-based research efforts are meaningful partnerships with people and organizations. As obvious as that may sound, we have found a substantial unmet need for strong partnerships between researchers and community members in St. Louis and around the country.
Understanding the future of genomics wouldn’t be possible without engaging young scientists, doctors, engineers, and mathematicians in-training. We have been fortunate to work alongside Black Girls Do STEM [link], a St. Louis-based non-profit seeking to diversify innovation and empower Black girls to achieve equitable representation in STEM (Science, Technology, Engineering and Mathematics).
This partnership began with a day-long field trip to the McDonnell Genome Institute at WUSM to expose students to genomic research and public health. More than 20 students and their families participated in a full day of hands-on activities, including cell culture, microscopy, machine learning, and a conversation with a person carrying a rare genetic mutation.
After this field trip, 14 high school students became research interns with BGP on three unique research teams. These teams met virtually and in-person throughout the semester and were exposed to the basics of recruitment, data collection, and analysis and the complex questions sparked by conversations with community members.
As a complement to the research exposure, one of our most meaningful experiences occurred during book club sessions exploring The Immortal Life of Henrietta Lacks by Rebecca Skloot. Here, students began making connections between BGP and their own experiences as Black girls in St. Louis.
The research experience culminated with three high school research interns presenting with the rest of our WUSM and Yale research teams at the 2023 American Public Health Association (APHA) Annual Meeting & Expo in Atlanta. This experience was unprecedented for our research team and our colleagues at the conference.
Our student interns experienced various facets of genomic public health research in meaningful ways: they were fully immersed into a research team of graduate students and young scholars, they developed new understandings of what it means to participate in research, and they contributed novel research to a professional scientific audience.
Community and genomics matter to young people in St. Louis. For kids interested in STEM, BGP’s connection to genomics, precision medicine and health stimulates their analytical and creative minds. And more important than anything, we witnessed students contribute to research being done with, for, and in their communities, maybe for the first time. Young people that value reaching non-European communities are essential for an equitable future in genomics and precision medicine.
The Black Genome Project’s commitment to equity is unwavering. In the Greater St. Louis community, if we are going to make good use of genomics and precision medicine, we must ensure that we continue equitable practices, including incorporating the voices, the experiences, and the contributions of all people impacted by it.
Brett Maricque is an assistant professor of genetics at the McDonnell Genome Institute at Washington University School of Medicine (WUSM) and graduate of WashU’s Division of Biology and Biomedical Sciences.
Chelsey R. Carter is an assistant professor of public health at Yale University and graduate of WashU’s Department of Anthropology.
