Date of Award

January 2023

Document Type

Thesis

Degree Name

Master of Public Health (MPH)

Department

School of Public Health

First Advisor

Chelsey R. Carter

Second Advisor

Trace Kershaw

Abstract

Background: Historical injustices towards Black populations in the United States have impacted how communities interact with medicine and public health such as medical experimentations, scientific racism, medical racism, and eugenics. 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 an observational mixed-method study to explore how Black communities in St. Louis view genetic research, genetic testing, and the use of genetic information. The data collected through the BGP, used an ethnographic approach and a Community-Based Participatory Research (CBPR) approach. This project used a Black Feminist Theory and Thematic analysis to analyze the focus group interviews. Qualitative focus groups were analyzed using NVivo 1.7.1 (2020). Participants (n=30) identify as Black, African American, or those of African descent. Results: 11 unique themes emerged across the focus groups. These themes were: (1) Race as a Social Construct, (2) Bloodline Inheritance, (3) Scientific Racism, (4) Privacy Concerns in Genetic Data Collection, (5) Nature versus Nurture, (6) Skepticism towards Science, (7) DNA as Ubiquitous or Unique, (8) Applications of Genomic Sequencing, (9) Genomic Language, (10) Feelings of the African Diaspora, (11) Knowledge and Experiences with Genetic Topics. Conclusions: Preliminary findings are promising to research in demonstrating the diversity of experiences that Black people have with genetic information. The promise of this project is that it will hopefully create a paradigm shift in how public health scientists consider race, specifically Black identity, in health science research. Keywords: Black populations, Genomics, Genetics, Qualitative Research, Medical Mistrust, Social and Behavioral Sciences

Comments

This thesis is restricted to Yale network users only. It will be made publicly available on 05/22/2026

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