4034.0 Exploring the perceptions of genetics, genomic medicine, and science in black communities

Session: Health Disparities in Genomics

Program: Genomics Forum

Time: 9:00 - 9:15 AM

Presenters:

Maame-Owusua Boateng

Devin Brown

Chelsey Carter, PhD, MPH

Abstract

Background: Historical injustices towards Black populations in the United States have impacted how communities interact with medicine and public health. Black communities are underrepresented in human genomics projects compared to those that identify as white or of European ancestry. Prior research has demonstrated that Black people are less likely to know about the availability of genetic testing for diseases and have less confidence in the benefits of genetic testing. These disparities make it imperative to understand the perspectives of people of African descent.

Methods: The Black Genome Project is a mixed-method study utilizing ethnographic community-based participatory research approaches. This study explores how Black communities in St. Louis, Missouri perceive genetic research, testing, and data. Data collection and analysis have been ongoing since June 2022. Focus groups (n=5) with 30 participants were double-coded, and critical themes were elucidated through thematic analysis.

Results: Six unique themes emerged across focus groups: Medical and Data Mistrust, Longing for Diaspora, Physical Characteristics, Power and Control, Bloodline Inheritance, and Nature versus Nurture. Themes revealed structural and individual concerns about interacting with genetic material, genomic medicine's unknown future(s), and cultural beliefs mired in histories of medical harm and exploitation.

Conclusions: Preliminary findings are promising and add to diverse experiences within genomics. Results reveal that a project centered on relationships and community repair can engender a collaborative paradigm shift for public health approaches to genomics.