DISCUSSION
The paucity of AA participation barriers associated with genomic
health-related research is wide-ranging and could account for difficulty
in both recruitment and retention in addition to health disparities. AAs
may be more difficult to recruit in genomic health-related research
studies due to mistrust of investigators, psychosocial impacts, and
cultural beliefs. Historically, these factors have led to missed
economic opportunities, inequalities, poor health, reduced quality of
life, and premature death. As research continues to uncover unethical
human experimentation and as governmental regulatory bodies became
increasingly aware of research misconduct practices, the importance of
understanding historical underpinnings of research ethics will be key to
helping strengthen ethical guidelines in medical and health research
practices (Tuskegee University, 2021; National Institute of
Environmental Health Sciences, 2019; Office for Human Research
Protections, 2016, 2017, 2019; World Medical Association, 2019). These
efforts will be instrumental in reinforcing the importance of stringent
regulations needed to promote basic ethical principles of research
involving humans. Research participants believe that participating in
genomic-related health research would impose a change in lifestyle;
require time and commitment they are not willing to invest; infringe
upon cultural or religious beliefs and norms; cause discomfort and/or
pain during collection of biospecimens; promote insurance and
employment; would result in misuse of genomic data or failure to return
genomic results; family members being adversely impacted by genetic
results; result in incurred financial barriers and costs; provide no
benefit to health or possibly cause irreparable consequences; induce
diagnoses of a life threatening health condition; would lack of support
from the community; would not provide education about the research or
would exacerbate health education and health literacy challenges; would
not provide language translation services; would induce concerns about
privacy and confidentiality in protecting health information; there
would be a lack of trustworthiness among investigators; there would be a
lack of interest to participate in research; would not acknowledge past
unethical research practices involving human experimentation;
participation would induce psychosocial factors (e.g., stress,
hostility, depression, embarrassment, hopelessness, and despair); and
would lead to research stigmatization, encompassing the convergence of
1) identifying and labeling differences in human beings; 2) linking
labeled individual’s cultural belief to unfavorable characteristics and
negative stereotype constructs; 3) categorizing individuals into groups
of “us” and “them” in the application of said stereotype constructs;
4) loss of status and discrimination experienced by labeled individuals;
and 5) employing social, economic, political, or other influences that
reinforce and translate the aforementioned processes into detrimental
outcomes for labeled individuals.