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.
Keywords: Blacks, viewpoint, genomic, DNA, research, minority