Barriers to African American and Other Minority Population Participation
in Genomic-Related Health Research: A Systematic Literature Review
Abstract
The paucity of data for African Americans (AAs) participating in
health-related research (e.g., genomic health research) is often
attributed to difficulty in recruitment and retention. The COVID-19
pandemic, which has resulted in hundreds of thousands of deaths,
particularly in AA communities, has amplified the problem. Reasons for
not participating remain unclear and may account for health disparities
observed in these communities. Failure and unwillingness to participate
in research in general influences health disparities, which may lead to
missed economic opportunities, inequalities, poor health, reduced
quality of life, and premature death. This review assesses barriers to
acceptance of genomic-related health research among AAs and other
marginalized populations. To investigate barriers to participating in
health-related research involving deoxyribonucleic acid (DNA), 38
studies published in PubMed and Scopus between January 2008 and December
2018 were reviewed. Results were based on feedback collected by trained
research assistants and phlebotomists during structured group,
face-to-face, and telephonic. Reason for non-participation in genomic
related research were pervasive and included perceived and/or actual
experiences of mistrust and deceptiveness by investigators, misuse of
genomic data, unethical research practices, healthcare system distrust,
privacy concerns, socioeconomic influences, cultural beliefs, and other
influences associated with psychosocial factors. These results are
consistent with diminishing participation of AAs in DNA-related research
attributable to a range of factors leading to health disparities.
Addressing these factors among marginalized communities, and AAs who
have not largely been represented in DNA-related research, will guide
insights on how to conduct research in these communities.