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\begin{document}

\title{Barriers to African American and Other Minority Population Participation
in Genomic-Related Health Research: A Systematic Literature Review}



\author[1,1]{Karyn Onyeneho}%
\author[2]{Linda Thompson}%
\author[2]{Priscilla Okunji}%
\author[2]{Thomas Fungwe}%
\author[2]{Gina Brown}%
\affil[1]{Howard University}%
\affil[2]{Affiliation not available}%


\vspace{-1em}



  
  \date{May 20, 2024}


\begingroup
\let\center\flushleft
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\selectlanguage{english}
\begin{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.\\%
\end{abstract}%



\sloppy


\textbf{Barriers to African American and Other Minority Population
Participation in Genomic-Related Health Research: A Systematic
Literature Review}

Karyn N. Onyeneho\textsuperscript{1}, MS; Linda
Thompson\textsuperscript{1}, PhD, LN; Priscilla
Okunji\textsuperscript{2}, PhD, MS, RN-BC; Gina
Brown\textsuperscript{3}, PhD, MSA, RN; Thomas V.
Fungwe\textsuperscript{1}, PhD, CFS, FACN

\textsuperscript{1}Howard University Department of Nutritional
Sciences,\textsuperscript{2}Howard University Division of
Nursing,\textsuperscript{3}Howard University College of Nursing and
Allied Health Sciences

\textbf{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\textbf{.} 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.

\textbf{Keywords:} Blacks, viewpoint, genomic, DNA, research, minority

\textbf{BACKGROUND}

Recruiting African Americans (AAs) and other marginalized communities
into genomic-related health research is challenging and widespread,
ranging from studies involving DNA sequencing to gene-drug interactions.
George, Duran, \& Norris (2014) attribute the primary reason for this is
due to mistrust in researchers. Other studies demonstrate that AAs may
be more difficult to recruit based on mistrust of the health care system,
misuse of genomic data, privacy and confidentiality concerns, and
awareness of unethical research practices in human experimentation, like
the 1932 Tuskegee Syphilis Study (Otado et al., 2015; Sankar\selectlanguage{ngerman}é et al.,
2015; Spence \& Oltmanns, 2011). Other factors, such as socioeconomic
status and the type of intervention being studied have been reported and
historically, have been shown to disproportionately affect AA
participation in research compared to other communities. Participation
barriers influence health disparities which may lead to missed economic
opportunities and health promotion, inequalities, premature death, and
reduced quality of life.

\textbf{AIMS}

This review aims to investigate participation barriers in
genomic-related health research among AA research participants and other
marginalized groups. Inclusion criteria was developed a priori and
limited to studies that explored perceptions on genomic-related health
research among AAs or persons of African descent (which included or
excluded other minority ethnic groups) and examined barriers and
facilitators influencing participation in health-related research
involving DNA.

\textbf{METHOD}

\textbf{Protocol and Registration}

This review's methodology was developed in accordance with guidelines
outlined by the Preferred Reporting Items for Systematic Reviews and
Meta-Analyses, PRISMA (Moher et al., 2009) and studies were selected if
they analyzed barriers to participation in genomic-related health
research among priority populations (i.e., AA research participants and
other ethnic minority populations). Searches for published articles
occurred on January 6, 2019. Of the 38 results retrieved, 21 were
focused exclusively on feedback from AA research participants (i.e.,
persons of African, African American, and African-Caribbean ancestry), 9
were focused on feedback from AA and other ethnic minority research
participants (i.e., persons of Cuban, Puerto Rican, Mexican, South
American, Central American, Asian, and Native American ancestry), and 8
were focused on feedback from Whites (i.e., persons from European
ancestry).

\textbf{Eligibility Criteria}

The investigation focused on English language research literature
published between January 2008 and December 2018 in PubMed and Scopus.
The overarching goal was to examine expressed viewpoints about
genomic-related health research among AAs and other marginalized
communities willing or unwilling to participate in genomic-related
health research.

\textbf{Participants}

Research participants were nationals of or identified their ancestral
origin as Asia, Cameroon, Canada, the Caribbean, Central Africa,
Democratic Republic of the Congo, Eritrea, Europe, Gabon, Ghana, Kenya,
Native American, Nigeria, Senegal, Sierra Leone, Somalia, Uganda, United
Kingdom, and United States. Ethnic minority stratification was
identified as African, African American, African Caribbean ancestry;
mixed ethnicity as groupings of African, African American, African
Caribbean, Cuban, Puerto Rican, Mexican, South American, Central
American, Asian, and Native American ancestry; and other ethnic
populations as any combination of European or White, African, African
American, African Caribbean, Cuban, Puerto Rican, Mexican, South
American, Central American, Asian, and Native American. The composition
of participants were community members, patients, cancer survivors,
students, donors, disease diagnosed persons, health and medical
professionals, and health policymakers recruited from residential
exchanges, biobanks, health systems (i.e., hospitals, outpatient
clinics, transplantation centers, and academic medical centers), health
education conferences, churches, college campuses, assisted living
facilities and nursing homes, barber and nail salons, community-based
organizations (i.e., wellness, fitness, oncology, and breast cancer
support centers), health fairs, courthouses, professional associations
and societies, shelters, bus stops, neighborhood parks and associations,
sports venues, grocery stores, laundromats, rural townships and urban
communities, gas stations, check cashing venues. Sample sizes were
approximated: 9,408 AA subjects (comprising persons of African, African
American, and African Caribbean ancestry) were sampled as; 5,353 White
subjects (comprising persons of European ancestry) were sampled; 1,118
Hispanic subjects (comprising persons of Cuban, Puerto Rican, Mexican,
South American, Central American, or other Spanish ancestry) were
sampled; and 794 other ethnic populations (comprising persons of Asian
and Native American ancestry) were sampled. The mean age of research
participants ranged from 32.5 to 64.3 and for AAs, ranged from 33.4 to
55 years.

\textbf{Problem}

The paucity of data on AA participation in genomic-related health
research is often attributed to difficulty in recruitment and retention
and reasons for not participating remain unclear. This may lead to
missed economic opportunities, health inequalities, poor health, reduced
quality of life, and premature death.

\textbf{Quality Rating}

Quality review scores were denoted as positive or neutral (Shea, 2017).
Of the included studies,

32 received a positive quality rating and the remaining 6 received
neutral ratings (Bussey-Jones

et al., 2010; Cottler et al., 2013; Kennedy et al., 2011; McDonald et
al., 2012; McDonald et al.,

2014; and Yu et al., 2013). The neutral ratings were based on
misreported information of an

individual's viewpoint about their willingness to participate in
genomic-related health research

leading to inferences drawn by authors; incorrect reporting of sample
size, income, education,

and ethnic demographic data when comparing diagrammatic data to that
which was reported

from investigators; ambiguous descriptive data about participant
responses on barriers and

facilitators to participate in genomic health research; and an
incomplete research study which the

author attributed to recruitment issues.

\textbf{Intervention}

Only studies that included interventions towards genomic-related
research involving risk for a chronic health condition were included.

\textbf{Outcomes}

Interventions that presented outcomes related to AA viewpoint
assessments about acceptance barriers to participate in genomic-related
health research among AAs (and other marginalized communities) were
included.

\textbf{Study Design}

Qualitative, quantitative, and mixed-methods studies published between
January 2008 and December 2018 were included in this review.

\textbf{Information Sources}

With the research team, studies were independently assessed for
eligibility by two reviewers who

performed the screening process independently. Titles were screened
first, followed by

screening of abstracts and finally full text articles were screened when
appropriate. Conflicts

were resolved through negotiation between the two screeners, to attain
consensus. The search

strategy comprised the application of the following keyword combinations
and Medical Subject

Heading terms: African, Black, minority, immigrant, viewpoint, attitude,
genomic, research,

DNA, health research, genetic, effective recruitment, participation,
sociocultural influences,

genetic risk, assessment, test, genotype, biobank, community leader, and
genetic studies. To

ensure all relevant studies were captured, bibliographies of included
studies were reviewed.

Inclusion of these additional studies were designated as hand search.
The included studies

assessed viewpoints from AAs and other minority ethnic research
participants via structured in

person and telephone interviews and focus groups, including adult and
sibling pairs (qualitative);

questionnaires and surveys (quantitative); and mixed-method approaches.

\textbf{Study Selection}

Two researchers independently used the PRISMA model to critically
appraise each study (Moher et al., 2009). A total of 38 publications met
inclusion criteria for this review. See Table 1. Studies were excluded
if the study did not comprise or include African American research
participants, non-English speakers and writers, or a method involving
the qualitative or quantitative assessment of viewpoints about
participation barriers and willingness to participate in genomic-related
health research.

\textbf{Data Extraction}

Key data were extracted from included studies by three research team
members. These data

included geographical location, disease classification, and ethnic and
ancestral origin. Research

team members grouped disease classification into the following
categories: cancer,

cardiovascular disease; diabetes, DNA/blood sampling, epidemiology,
genetic/genomic testing,

health-related, human immunodeficiency virus (HIV), medical, and
various. See Table 3.

Instruments were developed to assess accuracy and validity of
quantitative data available in

studies and quality review scores were assigned to each study based on
consistency of reported

elements to aid the interpretation of data collection.

\textbf{Synthesis of Results}

The data extracted from the included studies were combined to present in
narrative form. All authors examined the results for consensus that the
data presented addressed the review's research question: What are the
barriers to acceptance of genomic-related health research among AAs and
other minority populations?

\textbf{RESULTS}

After identifying 119 unique studies, 38 full-text articles were
assessed for eligibility and met the inclusion criteria for
methodological quality (see Figure 1). The studies were classified for
inclusion according to PRISMA's review elements: identification,
screening, eligibility, and included studies. Each study included
quantitative, qualitative, and mixed-methods approaches to collecting
data. A total of 18 duplicate studies were excluded from this review.

\textbf{Study Design and Purpose}

The studies included in this review varied in design and purpose.
Research was carried out between 1998 and 2017 and conducted in Canada,
Nigeria, the United Kingdom, and the United States and assessment
conducted ranged in duration from one month to five years and
assessments lasted between 15 and 120 minutes. Twenty-five studies
engaged qualitative methods (comprising in-person, telephonic, and focus
group interviews, including adult and sibling pairs), seven studies
engaged quantitative methods (comprising questionnaires and surveys),
and six studies engaged mixed-methods. The purpose of the interventions
examined barriers and facilitators to participate in genomic-related
health research.

\textbf{Qualitative Studies}

The following qualitative studies were conducted to assess
characteristics, participation, and perceptions about genetic health
research among individuals with personal or familial history of
hereditary disease and recipients of health care services, and community
members: Amiri et al., 2014; Cottler et al.; 2013, Edwards et al.; 2008,
Gill et al., 2013; Glenn et al., 2012; Goldenberg et al., 2010; Gordon
et al., 2018; Henderson et al., 2008, Hurtado-de-Mendoza et al., 2009;
Jenkins et al., 2009; Johnson et al. 2009; Kennedy et al., 2011; Lemke
et al., 2010; McDonald et al., 2012; McDonald et al., 2012; Mezuk et
al., 2008; Pettey et al., 2015; Ramirez et al., 2015; Rodgers et al.,
2018; Scarinici et al., 2013; Still et al., 2014; Streicher et al.,
2011; Sussner et al., 2009; Walker et al., 2014; and Yu et al., 2013.

\textbf{Quantitative Studies}

The following quantitative studies were conducted to assess indicators
for effective recruitment, research participant's intention or
willingness to engage in biomedical research (including those involving
clinical trials), and factors affecting research participation:
Braunstein et al., 2008; Byrd et al., 2011; Diaz et al., 2008; Jones et
al., 2017; Lang et al., 2013; McDonald et al., 2014; and Spruill et al.,
2009.

\textbf{Mixed-Methods Studies}

The following mixed-methods studies were conducted to assess
participation in genetic testing by social groupings, participation in
genomics research and DNA biobanking, trust in genetic research,
attitudes about genomics testing for complex diseases, and the desire to
receive personal genetic results: Alford et al., 2010; Buseh et al.,
2012; Bussey-Jones et al., 2010; Fagbemiro \& Adebamowo, 2014; Kapiriri
et al., 2017; and Sanderson et al., 2013.

\textbf{Study Findings}

AA participants who were interviewed expressed concerns about trust and
the lack of sensitivity on part of research investigators regarding
historical abuses that have occurred in AA communities, like the
Tuskegee Syphilis Study; having predisposed socioeconomic influences,
distrust of the healthcare system, psychosocial impacts, misuse of
genomic data, privacy and confidentiality concerns, research
stigmatization, employment discrimination, lacking health literacy,
adverse impacts to cultural beliefs, lack of community and civic
support, and perceived and/or actual past negative experiences as a
research participant. The findings demonstrated There were high
frequency rates across thematic areas associated with participation
barriers experienced by AAs (see Figure 3). Overall thematic frequency
rates in AA-only studies yielded a 68\% rate compared to mixed minority
ethnic population studies at 12\% and all other studies at 8\%. Top-five
themes: 1) researcher mistrust and historical abuses in health research;
2) psychosocial factors, including perceived and/or actual or past
negative experiences involving health-related research, including
depression, anxiety, social disruption and risk perceptions; 3)
participation in a research study would cause harm and/or no benefit to
a person's health status, including a disease condition or overall
quality of life; 4) fear of health status and/or medical diagnosis of an
individual who would otherwise not have known or had an interest in
wanting to know their health status, including disease condition; and 5)
research stigmatization associated with health status or a disease
condition labeled to a particular ethnic population group which would
subject an individual to alienation and/or cause harmful consequences.
Aggregate findings of results indicate that viewpoint assessments were
dominant among AAs. Feedback collected from studies comprising non-AA
participants (i.e., other ethnic minority populations) were closely
similar to AAs regarding mistrust on part of research investigators and
participant's lack of knowledge about a research study, including risks
and benefits. Other pervasive feedback included the need to address
psychosocial factors (such as feelings of depression, anxiety,
embarrassment, loneliness, and despair) and risk perceptions about
research investigators. Participants described that research
investigators were more trusting if they resembled belonging to the same
ethnic population group as the participant which would make them feel
more comfortable engaging with the investigator (Gill et al., 2013).
Studies involving ethnic minorities and individuals who were ``White,
more educated, more knowledgeable about genetic research, and more
trusting of medical researchers'' (Henderson et al., 2008) were found to
be less reluctant to participate in a genomic health study. Other
concerns raised about participating in genomic-related health research
were the need to ensure participants were educated about genetic
research broadly through public awareness campaigns and other
communicative efforts and ensure recruitment efforts were aimed towards
ethnically diverse groups, including disease advocacy groups (Lemke et
al., 2010). Participants also expressed the need to ensure that
recruitment efforts targeting ethnic minority populations comprise
educational learning opportunities that elucidate genetic research and
composite information, such as genomic data sharing and genetic
counseling (Lemke et al., 2010; Streicher et al., 2011; Glenn et al.,
2012; Ramirez et al., 2015). In other studies, participants expressed
need for investigators to incorporate community health workers into
research teams which play an integral role in reducing recruitment
challenges (Cottler et al., 2013). These findings emphasize the need to
address concerns about recruitment challenges critically and steadfast.
The top five thematic participation barriers common among all ethnic
populations are: 1) researcher mistrust and historical abuses in
research, 2) psychosocial impacts and risk perceptions, 3) harm or no
benefit to subjects and actual or perceived negative experiences, 4)
fear of knowing their health status or health condition, including
medical diagnoses, and 5) research stigmatization. The major differences
between populations regarding participation barrier is that AAs were
more reluctant to participate due to known historical abuses in
biomedical research, including clinical trials, and overall mistrust
with researchers. Some studies were distinguishable:

Buseh et al. discussed that AAs feel they would be harmed as
participants due to historical and colonial mistreatment of African
ancestry research participants and expressed that their participation
would not contribute to altruist solutions towards prevention of
disease. They also indicated that they were not likely to participate
because they believed their genetic data would be misused and could lead
to deportation to their home countries based on undocumented immigration
status. Other pervasive factors included psychosocial factors and
cultural beliefs.

Byrd et al. also discussed that AAs lack trust in participating due to
historical abuses in human experimentation against AAs and in some
cases, their reluctancy to participate was due to not having sufficient
time to engage in the research study due to lack of time or being too
busy, having a health issue, and not having an interest in
participating.

Diaz et al. discussed that AAs were reluctant to participate due to
confidentiality and privacy concerns and they believed investigators
were untrustworthy.

Edwards et al. discussed that AAs were concerned about the effect
participation would have on their family and the potential of learning
about a health condition that would affect their children and other
family members who could be disease-gene carriers. AAs also believed
that they could develop guilt after obtaining knowledge about a
life-threatening health and could be singled out or viewed negatively
because of this. As well, they felt that knowing they carry a life
threating genetic variant could lead to feelings of suicide. There was
also concern about confidentiality and losing their health insurance
coverage.

Fagbemiro et al. discussed that AAs felt their children may face
psychosocial impacts derived from positive genetic findings of a
life-threatening health condition and believed that participating in
genomic health-related research would present harm to the fetus of their
unborn offspring as well as having to face dilemmas associated with what
decisions about aborting the fetus. Other viewpoints discussed religious
concerns and not having access to an intervention combat disease upon a
pathogenic finding.

Gordon et al. discussed that AAs had concerns about genetic variants
known to have harmful effects on health conditions that could place them
at risk for adverse conditions, such as kidney failure. Others expressed
their fear in experiencing distress from learning about a pathogenic
variant believing it could result in harm and AAs were apprehensive
about participating due to concerns about health insurance
discrimination and not being able to afford the cost of genetic testing.
In addition, AAs expressed the belief that they are likely to be
stigmatized as research participants and discriminated on based on their
ethnic makeup.

Hurtado-de-Mendoza et al. discussed that AAs believed they would develop
stress; for example, stress related to breast or ovarian cancer
diagnosis and/or risk of developing breast or ovarian cancer. Others
believed that they could not trust medical professionals and
researchers.

Jones et al. discussed that AAs would not have sufficient time to
participate, was afraid of learning about an unanticipated health
condition, had mistrust of researchers in misusing their genetic data
(such as fears of being cloned), and not being compensated for their
participation.

Kapiriri et al. discussed that AAs were reluctant to participate due to
cultural beliefs, lack of privacy and confidentiality of a known health
condition (such as public knowledge of their HIV status), and fear of
being diagnosed of an unanticipated health condition.

Kennedy et al. indicated that AAs were reluctant to participate in
genomic health-related research due to their unwillingness to
participate, suggesting their lack of trust in researchers and medical
professionals.

Lang et al. discussed that AAs did not have sufficient time to
participate, lacked trust in medical professionals and researchers, did
not want to participate in research due to issues with past human
experimentation, and believed they were too old to participate.

McDonald et al. (2012) discussed that cultural factors and religious
beliefs presented participation barriers in addition to temporal
orientation (i.e., beliefs about specific domains of time; past,
present, future and the value of genetics research).

McDonald (2012) et al. discussed AAs had distrust with investigators and
study sponsors, including government and pharmaceutical companies and
believed that study results could be manipulated. Participation barriers
were also aligned with a lack of knowledge and/or being able to obtain
information or procedures involved to participate in the study
(including experiencing negative side effects), concerns about
exploitation, and the potential for the results of study to have a
negative impact on AA communities. AAs also expressed their reluctancy
to participate due to the commitment of their time.

McDonald (2014) et al. discussed that AAs were concerned with privacy
and data sharing, biobanking tampering, having overall mistrust in
researchers, not having legal rights to obtain their genetic data
(including fearing their genetic data would not be returned to them),
being harmed from the research and/or being harmed from knowing about a
health condition, and psychosocial impacts. AAs also expressed that they
did not have time to devote to the research study or would have issues
commuting to a test site.

Pettey et al. discussed that AAs were concerned with breach of their
privacy, needing more information to make a decision about participating
in the research study, fear of experiencing pain, having mistrust in
researchers, being unsure if their work schedule would permit them to
commit time to participate, not trusting that their participation in a
research study would be helpful and/or would provide a benefit, and not
trusting that their genetic data would be returned to them.

Rodgers et al. discussed that AAs had a lack of understanding about the
research study and namely, not understanding certain terms associated
with the research study protocol or lacking health literacy. AAs also
expressed having a mistrust of the healthcare system and believed their
personal health information could be misused or they would not be able
to seek medical care upon a research finding. Others had an unfavorable
attitude towards research.

Scarinci et al. discussed that AAs were embarrassed to participate due
to psychosocial impacts and were afraid of learning about a health
condition, experiencing discomfort, lacking financial resources to
participate, and not being having sufficient transportation to the study
site.

Spruill et al. discussed that AAs believed that participating would
result in research stigmatization and discrimination against other
ethnic minority populations.

Still et al. discussed that AAs were concerned with the storage and use
of their DNA and had mistrust in researchers.

Sussner et al. discussed that AAs lacked confidence in researchers
conducting the study and believed that their participation would
jeopardize their existing health insurance coverage.

They were afraid of what they may find out about their health status and
feared they may experience hopelessness, despair, an emotional reaction,
and not being able to handle results from their genetic findings
(including feeling ashamed if they discovered a pathogenic variant).
Research stigmatization concerns also caused AAs to view participation
negatively and expressed concerns of guilt if family members were
impacted after they learned of a pathogenic finding.

Walker et al. discussed that AAs feared that they would have to change
their lifestyle if they participated. For example, having to adhere to a
special diet or exercise program and they feared having to change their
medication regimen. AAs also feared they would develop some form of
illness or abnormality from research findings, not having sufficient
time to participate in the research study (including having to take time
away from their work), and not having trust in researchers based on past
human experimental abuses.

\textbf{Outcomes}

The diminishing participation of AAs in genomic research and other
health-related studies have led to growing concerns about health
disparities, particularly among AAs and other ethnic minority
populations.~Lower- and middle-income level participants in AA-only
studies yielded the highest rankings (see Figures 4, 5, and 6).
Lower-income participants earning \$45,200 were evident in Buseh et al.,
2010; Edwards et al., 2008; Gordon et al., 2008; McDonald et al., 2012;
McDonald et al., 2014; Pettey et al. 2015; Rodgers et al., 2015; Still
et al., 2014; and Sussner et al., 2009. Income levels were adapted to
model national household income guidelines of the Pew Research Center
Report (Kochhar, 2018) and were classified as lower-income (representing
less than \$45,200), middle-income (representing \$45,200-\$135,600),
and upper-income (representing more than \$135,600). Researchers found
disparities were specific to education in that research participants who
were White and had a college education were more likely to participate
in genomic-related health research (Henderson et al., 2008; Amiri et
al., 2014; Gill et al., 2012; Lemke et al., 2010). Education and income
data were grouped by populations. See Table 2. Education levels ranged
from completed less than high school education to attended or completed
college education. Education data illustrated in Figure 2 represents
self-reported data collected during the research viewpoint assessment.
Aggregate educational level data exclusively focused on AA viewpoints
averaged 5\% for less than high school education completed, 17\% for
completion of high school education, and 15\% for completion of college
education or higher. Aggregate educational level data across studies
that focused on viewpoints from mixed ethnic minority populations
averaged 6\% for less than high school education completed, 17\% for
completion of high school education, and 15\% for either attending
college or completing college education.

\textbf{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.

\textbf{LIMITATIONS}

Use of the internet as this method of collecting responses may pose a
hindrance to low-educated participants who may not know how to use the
internet or may have limited knowledge about utility (Alford et al.,
2010). Few studies grouped study demographics by highest level of
education completed jointly without stratification (Alford et al., 2010;
Kennedy et al., 2011; Lemke et al., 2010; Rodgers et al., 2018) which
may obscure results. Some studies were developed with outcome variables
that were hypothetical in nature in which researchers evaluated intent
or interest to participate in current or future genomic-related health
research in contrast with actual participation (Goldenberg et al., 2010;
McDonald et al., 2012; McDonald et al., 2012; Braunstein et al., 2008;
Henderson et al., 2008; Diaz et al., 2008). Previous studies have shown
that intention to participate does not convert to actual participation
(Donovan, 2000). Some study designs were cross-sectional which limits
the ability for researchers to analyze response rates over a period and
do not necessarily determine causal effects of participation barriers
(Cottler et al., 2013; Hurtado-de-Mendoza et al., 2016) while other
studies were exploratory or observational suggesting that research may
not have been well researched before and may represent response rates
that are not truthful or are skewed based on participants not being
situated in their natural setting when being observed (Ramirez et al.,
2015). All studies reporting participant socioeconomic demographics were
based on unreliable self-reporting and may potentially be skewed. Some
studies reported participation incentives (e.g., cash or gift) may
unduly encourage research participation and generate contrasting task
outcomes and unintended outcomes (Singer \& Couper, 2008; Hsieh \&
Kocielnik, 2016; Zutlevics, 2016). One study utilized language
interpreters to increase knowledge awareness among research personnel
(Gill et al., 2013). One study reported that data collection was
conducted prior to the passing of the Genetic Information
Nondiscrimination Act (GINA) of 2008 (Goldenberg et al., 2010) and this
may have influenced participant viewpoints. One study reported that no
adjustments were considered for categorical differences in disease areas
which may present challenges with disambiguating inferences drawn from
the data (Amiri et al., 2014). There was evidence in one study that
researchers made concerted efforts to demonstrate researcher
trustworthiness which may have influenced false-positive qualitative
data (Bussey-Jones et al., 2010). In another study, researchers
suggested recruitment biases (Bussey-Jones et al., 2010). One study
attested that due to the brevity of the data collection, results may be
untenable (Cottler et al., 2013). In another study, researchers
expressed that some participants may not have felt empowered to provide
input because other participants in the group were overly expressive or
outspoken in expressing their views (Lemke et al., 2010). Sanderson et
al., (2013) did not disclose to participants what genomic health
research was, including describing its significance to the viewpoint
assessment. In another study, researchers reported that responses to
viewpoint assessments may have possible generated findings from an
inherently biased sample (Bussey-Jones et al., 2010). Some studies
comprised participants who had already participated in participation
barrier studies which may have skewed response rates to the present
study (Bussey-Jones et al., 2010; Kapiriri et al., 2017). Sample size
was reported as small and not generalizable in many studies thus
manifesting low statistical power in approximating the priority
population (Spruill, Coleman, \& Collins-McNeil, 2009; Sussner et al.,
2009; McDonald et al., 2012; McDonald et al., 2012; Jenkins et al.,
2009; Kennedy et al., 2011; Glenn, Chawla, \& Bastani, 2012; Walker et
al., 2014; Hurtado-de-Mendoza et al., 2016; Ramirez et al., 2015; 2016;
Kapiriri et al., 2017).

\textbf{CONCLUSION}

Diminishing participation of AAs in genomic-related health research is
attributed to a range of factors leading to growing concerns about
health disparities and it is important to address these factors, among
marginalized communities like AAs to promote better health outcomes.
Researchers should develop well-defined research protocols inclusive of
CBPR approaches that make clear the purpose of the study, including
risks and benefits, and provide research participants with appropriate
understanding of the type of research being undertaken and the value of
participating.

\textbf{IMPLICATIONS FOR GENOMIC RESEARCH PRACTICE}

Integrating benefit-sharing models, including quality informed consent
measures seems to be a substantial and economical solution to increase
recruitment.

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  A., Brown, K., Kapil-Pair, N., Bovbjerg, D. H., Schwartz, M. D.,
  \ldots{} Valdimarsdottir, H. B. (2009). \emph{The influence of
  acculturation and breast cancer-specific distress on perceived
  barriers to genetic testing for breast cancer among women of African
  descent.} Psycho-oncology, 18(9), 945-55. Retrieved February 03, 2019,
  from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2735601/.
\item
  Tuskegee University. (2021). \emph{About the USPHS Syphilis Study} .
  Tuskegee University. Retrieved January 03, 2019, from
  https://www.tuskegee.edu/about-us/centers-of-excellence/bioethics-center/about-the-usphs-syphilis-study.
\item
  University of New Mexico Health Sciences Center. (2020, March
  24).\emph{CBPR Model} . CBPR Model :: Center for Participatory
  Research \textbar{} The University of New Mexico. Retrieved March 11,
  2019, from
  https://cpr.unm.edu/research-projects/cbpr-project/cbpr-model.html.
\item
  Veatch, R. M. (2016). \emph{Henry Beecher's Contributions to the
  Ethics of Clinical Research} . Perspectives in biology and medicine.
  Retrieved January 03, 2019, from
  https://pubmed.ncbi.nlm.nih.gov/27499481/.
\item
  Walker, E. R., Nelson, C. R., Antoine-LaVigne, D., Thigpen, D. T.,
  Puggal, M. A., Sarpong, D. E., \& Smith, A. M. (2014). \emph{Research
  participants' opinions on genetic research and reasons for
  participation: A Jackson Heart Study focus group analysis.} Retrieved
  February 03, 2019, from https://pubmed.ncbi.nlm.nih.gov/25065069/.
\item
  World Medical Association. (2019). \emph{WMA Declaration of Helsinki
  -- Ethical Principles for Medical Research Involving Human Subjects} .
  Retrieved January 16, 2019, from
  https://www.wma.net/policies-post/wma-declaration-of-helsinki-ethical-principles-for-medical-research-involvi.
\item
  Yu, J. H., Crouch, J., Jamal, S. M., Tabor, H. K., \& Bamshad, M. J.
  (2013). \emph{Attitudes of African Americans toward return of results
  from exome and whole genome sequencing.} American journal of medical
  genetics. Part A, 161A(5), 1064-72. Retrieved February 03, 2019, from
  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3635144/.
\item
  Zutlevics, T. (2016, February 18). \emph{Could providing financial
  incentives to research participants be ultimately self-defeating?} .
  Retrieved March 16, 2019, from
  https://journals.sagepub.com/doi/full/10.1177/174701611562675
\end{enumerate}

Table 1 \emph{Studies Included in the Review}\selectlanguage{english}
\begin{longtable}[]{@{}llllll@{}}
\toprule
\begin{minipage}[t]{0.14\columnwidth}\raggedright\strut
First Author, Publication Year\strut
\end{minipage} & \begin{minipage}[t]{0.14\columnwidth}\raggedright\strut
\textbf{Location}\strut
\end{minipage} & \begin{minipage}[t]{0.14\columnwidth}\raggedright\strut
\textbf{Participation Incentive}\strut
\end{minipage} & \begin{minipage}[t]{0.14\columnwidth}\raggedright\strut
\textbf{Population of Interest}\strut
\end{minipage} & \begin{minipage}[t]{0.14\columnwidth}\raggedright\strut
\textbf{Participation Barriers}\strut
\end{minipage} & \begin{minipage}[t]{0.14\columnwidth}\raggedright\strut
\textbf{Participation Facilitators}\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
\emph{Alford, 2010}\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Henry Ford Health System Location\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Yes\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
All populations\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Lack of health literacy\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Participation incentives/free testing\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
\emph{Amiri, 2014}\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Henry Ford Health System\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Yes\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Mixed minority\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Researcher mistrust/historical abuses in research No commitment/time
Privacy/confidentiality concerns Impersonal feelings\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Altruism\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
\emph{Braunstein, 2008}\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Outpatient cardiology and general medicine clinics\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
No\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
All populations\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Researcher mistrust/historical abuses in research Harm/no
benefit/negative experience\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Health promotion/disease prevention\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
\emph{Buseh, 2012}\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Community\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
No\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
AA-only\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Harm/no benefit/negative experience Researcher mistrust/historical
abuses in research Misuse of genomic data Psychosocial factors/risk
perceptions Cultural/religious beliefs\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Health promotion/disease prevention Autonomy/self-empowerment
Acquire/increase health literacy\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
\emph{Bussey-Jones, 2010}\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
North Carolina Colorectal Cancer Study\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Yes\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
All populations\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Privacy/confidentiality concerns Researcher mistrust/historical abuses
in research Discomfort/pain Not interested in participating\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Previously participated in a research study\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
\emph{Byrd, 2011}\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Public locations (churches, health education conferences, caregiver
conferences, co-ed senior homes, barber/beauty shops)\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
No\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
AA-only\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Researcher mistrust/historical abuses in research No commitment/time
Fear of health status/medical diagnosis Not interested in
participating\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Compensation/participation incentive Was diagnosed with disease being
studied Family impact Altruism\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
\emph{Cottler, 2013}\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Public locations (barbershops, beauty shops, parks, shelters, bus stops,
community agencies, churches, neighborhood associations, health care
facilities, sports venues, grocery stores, laundromats, nail salons,
fitness centers, colleges, gas stations, check cashing venues, and
health fairs)\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Yes\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Mixed minority\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Fear of health status/medical diagnosis\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Health promotion/disease prevention Comfortable/adequate research
setting Foster trust with researcher/research community Access to
health/medical records No financial barriers/cost burdens\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
\emph{Diaz, 2008}\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Historically Black Colleges and Universities\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
No\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
AA-only\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Privacy/confidentiality Researcher mistrust/historical abuses in
research Not interested in participating\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Researchers ethnically resemble the community (namely, minority
communities)\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
\emph{Edwards, 2008}\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Physician referral and participant initiation\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
No\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
AA-only\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Family impact Research stigmatization Psychosocial factors/risk
perceptions Fear of health status/medical diagnosis
Privacy/confidentiality concerns Health insurance discrimination\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Family impact Promote disease surveillance behaviors (e.g., performing
self-examination of breasts, increase mammogram appointments with
healthcare provider, increase sense of personal control over knowledge
about disease genetic variant susceptibility) Health promotion/disease
prevention Acquire/increase health literacy\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
\emph{Fagbemiro, 2014}\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Nigerian residents living in the Federal Capital Territory\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
No\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
AA-only\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Family impact Fear of health status/medical diagnosis Cultural/religious
beliefs Harm/no benefit/negative experience\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Health promotion/disease prevention Predict future risk of a complex
disease Genetic testing is relevant Promote lifestyle change Family
impact Help formulate new health insurance plans by policymakers\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
\emph{Gill, 2013}\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
South Asian and Black African-Caribbean communities\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
No\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Mixed minority\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Lack of health literacy Language translation challenges Harm/no
benefit/negative experience Researcher mistrust/historical abuses in
research Psychosocial factors/risk perceptions Feeling too old in age to
participate\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Availability of language translators Promote diversity in research
Comfortable/adequate research setting Foster trust with
researcher/research community Acquire/increase health literacy
Compensation/participation incentives Health promotion/disease
prevention Family impact\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
\emph{Glenn, 2012}\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Community-based organizations and facilities (wellness centers, oncology
centers, breast cancer support centers)\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
No\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Mixed minority\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Misuse of genomic data Researcher mistrust/historical abuses in research
Lack of health literacy No commitment/time Financial barriers/cost
burdens Family impact Health insurance discrimination Change in
lifestyle\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Acquire/increase health literacy Access to genetic counseling Health
promotion/disease prevention Help make informed health decisions
Altruism\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
\emph{Goldenberg, 2010}\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Academic medical center and biobanks\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
No\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
All populations\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Misuse of genomic data Research stigmatization\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Altruism Family impact Health promotion/disease prevention\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
\emph{Gordon, 2018}\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Transplantation center\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Yes\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
AA-only\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Fear of health status/medical diagnosis Psychosocial factors/risk
perceptions Harm/no benefit/negative experience Health insurance
discrimination Financial barriers/cost burdens Research
stigmatization\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Altruism Health promotion/disease prevention\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
\emph{Henderson, 2008}\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
North Carolina Colorectal Cancer Study\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Yes\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Mixed-minority\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Misuse of genomic data Researcher mistrust/historical abuses in research
Psychosocial factors/risk perceptions Fear of health status/medical
diagnosis Privacy/confidentiality concerns Employment
discrimination\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Health promotion/disease prevention Return of genomic results
Acquire/increase health literacy Family impact\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
\emph{Hurtado-de-Mendoza, 2016}\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Community-based settings and hospitals\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Yes\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
AA-only\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Psychosocial factors/risk perceptions Lack of knowledge about study
Researcher mistrust/historical abuses in research\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Autonomy/self-empowerment Health promotion/disease prevention\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
\emph{Jenkins, 2009}\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Community\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Yes\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
All populations\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Discomfort/pain No commitment/time Psychosocial factors/risk perceptions
Researcher mistrust/historical abuses in research Misuse of genomic data
Privacy/confidentiality concerns\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Altruism Compensation/participation incentive Would participate if
self-collected biospecimen available Least invasive as possible
(comfortable/painless)\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
\emph{Johnson, 2009}\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Churches\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
No\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Mixed-minority\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Researcher mistrust/historical abuses in research Lack of knowledge
about study Harm/no benefit/negative experience Not interested in
participating Privacy/confidentiality concerns Cultural/religious
beliefs Research stigmatization Psychosocial factors/risk
perceptions\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Altruism Health promotion/disease prevention Promote diversity in
research Foster trust with researcher/research community Understands the
aims of the study Researchers ethnically resemble the community (namely,
minority communities) Compensation/participation incentives\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
\emph{Jones, 2017}\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Community\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
No\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
AA-only\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
No commitment/time Fear of health status/medical diagnosis Psychosocial
factors/risk perceptions Harm/no benefit/negative experience Misuse of
genomic data Researcher mistrust/historical abuses in research\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Altruism Compensation/participation incentives Promote diversity in
research Return of genomic results\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
\emph{Kapiriri, 2017}\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
AA adult HIV positive mothers\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Yes\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
AA-only\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Cultural/religious beliefs Fear of health status/medical diagnosis
Psychosocial factors/risk perceptions\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Receive a part of future profits gained from research Acquire/increase
health literacy Health promotion/disease prevention\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
\emph{Kennedy, 2011}\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
East Baton Rouge Parish, Southern University and A\&M College,
community\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Yes\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
AA-only\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Not interested in participating\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Altruism Protection of civil rights/felt protected by legal system
Biospecimens would not be misused Health promotion/disease prevention
Would enable breast feeding despite being diagnosed with HIV\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
\emph{Lang, 2013}\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Nonclinical setting\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
No\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
AA-only\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
No commitment/time Researcher mistrust/historical abuses in research
Fear of health status/medical diagnosis Not interested in participating
Feeling too old in age to participate\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Access to genetic counseling Acquire/increase health literacy\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
\emph{Lemke, 2010}\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Outpatient clinics and hospitals\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Yes\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Mixed-minority\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Privacy/confidentiality concerns Researcher mistrust/historical research
abuses Misuse of genomic data Health insurance discrimination Employment
discrimination Harm/no benefit/negative experience Lack of health
literacy Fear of health status/medical diagnosis Discomfort/pain\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Compensation/participation incentive Altruism Health promotion/disease
prevention Family impact\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
\emph{McDonald, 2012}\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
University of Pennsylvania Hospital System\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Yes\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
AA-only\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Cultural/religious beliefs Temporal orientation Harm/no benefit/negative
experience\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Altruism Family impact Health promotion/disease prevention Return of
genomic results\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
\emph{McDonald, 2012}\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Self-referrals and public locations\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Yes\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
AA-only\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Researcher mistrust/historical abuses in research Misuse of genomic data
Lack of knowledge about study Harm/no benefit/negative experience
Research stigmatization No commitment/time\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Patients who usually received healthcare at a community health clinic or
public facility were more likely to participate\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
\emph{McDonald, 2014}\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Residential exchanges nationwide\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Yes\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
AA-only\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Researcher mistrust/historical abuses in research Psychosocial
factors/risk perceptions Privacy/confidentiality concerns Misuse of
genomic data Harm/no benefit/negative experience Fear of health
status/medical diagnosis No commitment/time No transportation to study
site No return of genomic results Psychosocial factors\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Altruism Acquire/increase health literacy Understands the aims of the
study Knowing who has access to genomic data Knowing how genomic data
will be used pre/post research study Compensation/participation
incentive\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
\emph{Mezuk, 2008}\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
National Institute of Mental Health Epidemiologic Catchment Area\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Yes\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
All populations\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Psychosocial factors\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Altruism Health promotion/disease prevention Knowing how genomic data
will be used Acquire/increase health literacy Researchers ethnically
resemble the community (namely, minority communities) Family impact
Compensation/participation incentive Promote diversity in research Would
participate if biospecimen collected were administered via cheek swab or
saliva sample versus blood draws\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
\emph{Pettey, 2015}\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Faith-based urban clinic\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
No\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
AA-only\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Privacy/confidentiality concerns Lack of knowledge about study
Discomfort/pain Misuse of genomic data Researcher mistrust/historical
abuses in research Harm/no benefit No return of genomic results\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Genomic testing would help healthcare providers manage healthcare
Compensation/participation incentives Health promotion/disease
prevention Promote lifestyle change\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
\emph{Ramirez, 2015}\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
National Cancer Institute (NCI) Special Populations Networks (SPN) for
Cancer Awareness, Research, and Training program and the NCI Cancer
Genetics Network partnered with Susan G. Komen for the Cure\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
NR\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Mixed-minority\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Psychosocial factors/risk perceptions Family impact
Privacy/confidentiality concerns Researcher mistrust/historical abuses
in research Financial barriers/cost burdens Harm/no benefit Health
insurance discrimination\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Altruism Genomic testing would help healthcare providers manage
healthcare Health promotion/disease prevention\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
\emph{Rodgers, 2018}\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Community\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Yes\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
AA-only\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Lack of health literacy Researcher mistrust/historical abuses in
research Misuse of genomic data Not interested in participating\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Health promotion/disease prevention Learn about genetic testing Learn
about children's risk to disease genetic variants Family impact Help
make informed health decisions\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
\emph{Sanderson, 2013}\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Inner city hospital outpatient clinic\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
No\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
All populations\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Researcher mistrust/historical abuses in research Not interested in
participating Harm/no benefit No commitment/time Fear of health
status/medical diagnosis\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Family impact Health promotion/disease prevention Acquire/increase
health literacy\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
\emph{Scarinci, 2013}\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Public health clinic and community\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
No\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
AA-only\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Psychosocial factors/risk perceptions Financial barriers/cost burdens No
transportation to study site\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Altruism Family impact Health promotion/disease prevention
Acquire/increase health literacy\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
\emph{Spruill, 2009}\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
National Black Nurses Association\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
No\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
AA-only\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Research stigmatization\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Would participate if self-collected biospecimen available\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
\emph{Still, 2014}\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Public locations (churches, beauty shops, community centers)\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Yes\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
AA-only\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Misuse of genomic data Researcher mistrust/historical abuses in
research\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Family impact Acquire/increase health literacy Health promotion/disease
prevention\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
\emph{Streicher, 2011}\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Mount Sinai Biobank at Mount Sinai Medical Center\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Yes\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Mixed-minority\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Fear of health status/medical diagnosis Psychosocial factors/risk
perceptions Family impact\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Would participate if biospecimen collected were administered via cheek
swab or saliva sample versus blood draws Health promotion/disease
prevention Altruism\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
\emph{Sussner, 2009}\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Existing longitudinal study\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
No\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
AA-only\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Privacy/confidentiality concerns Health insurance discrimination Fear of
health status/medical diagnosis Psychosocial factors/risk perceptions
Research stigmatization Family impact\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Altruism Family impact Acquire/increase health literacy
Autonomy/self-empowerment Return of genomic results Return of ancestral
results\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
\emph{Walker, 2014}\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Jackson Heart Study\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Yes\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
AA-only\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Change in lifestyle Fear of health status/medical diagnosis No
commitment/time Researcher mistrust/historical abuses in research\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Acquire/increase health literacy\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
\emph{Yu, 2013}\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Pediatric clinics, community organizations, electronic flyers on Seattle
area parent electronic lists\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Yes\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
All populations\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Researcher mistrust/historical abuses in research Psychosocial
factors/risk perceptions Fear of health status/medical diagnosis No
return of genomic results\strut
\end{minipage} & \begin{minipage}[t]{0.16\columnwidth}\raggedright\strut
Health promotion/disease prevention Altruism Family impact Knowledge of
health status/medical diagnosis Acquire/increase health literacy
Understanding health disparities in minority populations\strut
\end{minipage}\tabularnewline
\bottomrule
\end{longtable}

Table 2 \emph{Study Characteristics: Education and Income Demographics}\selectlanguage{english}
\begin{longtable}[]{@{}lllllllllll@{}}
\toprule
First author, Publication Year & \textbf{Sample size (n)} & \textbf{Mean
age} & \textbf{Location} & \textbf{Gender} & \textbf{African-African} &
\textbf{Mixed-Minority} & \textbf{European} & \textbf{Other} &
\textbf{Education} & \textbf{Income}\tabularnewline
\emph{Alford, 2010} & 2,116 & 32.5 & United States & 53\% female & 26\%
& NR & 19\% & NR & 55\% = low education neighborhoods &
NR\tabularnewline
\emph{Amiri, 2014} & 455 & 63.7 & United States & 49\% female & 42\% &
3\% & 54\% & 2\% & 13\% \textless{} high school; 29\% = high school;
58\% \textgreater{} high school & NR\tabularnewline
\emph{Braunstein, 2008} & 717 & 54.1 & United States & 50\% female &
36\% & 0\% & 64\% & 0\% & 30\% \textless{} high school; 53\% = high
school; 84\% = some college/college graduate; 33\% = beyond college &
60\% [?] \$29,000; 40\% \$30,000-\$49,999; 36\% \$50,000-\$74,999; 35\% [?]
\$75,000\tabularnewline
\emph{Buseh, 2012} & 27 & 47 & United States & 59\% female & 100\% & 0\%
& 0\% & 0\% & 90\% \textgreater{} high school; 96\% = college education;
15\% = graduate degree & \$10,000-\$19,000, over \$70,000, and median
income from \$60,000-\$69,999\tabularnewline
\emph{Bussey-Jones, 2010} & 801 & 64 & United States & 43\% female &
19\% & 0\% & 81\% & 0\% & 15\% \textless{} high school; 25\% = high
school; 32\% \textgreater{} high school; 28\% = college and beyond &
21\% \textless{} \$20,000; 27\% \$20,000-40,000; 52\% \textgreater{}
\$40,000\tabularnewline
\emph{Byrd, 2011} & 583 & NR & United States & 62\% female & 100\% & 0\%
& 0\% & 0\% & 14\% \textless{} high school; 42.7\% = high school; 9.4\%
= Associate's; 25.7\% = Bachelor's; 15.2\% = Master's; 4.4\% = doctorate
degree & NR\tabularnewline
\emph{Cottler, 2013} & 5,979 & 42 & United States & 59\% female & 51\% &
17\% & 22\% & 8\% & 39\% = high school (AA); 20\% = high school (White);
10\% = high school (Hispanic); 8\% = high school (Other) &
NR\tabularnewline
\emph{Diaz, 2008} & 200 & NR & United States & 42\% female & 100\% & 0\%
& 0\% & 0\% & [?] Some college & NR\tabularnewline
\emph{Edwards, 2008} & 140 & 45.6 & United States & 100\% female & 100\%
& 0\% & 0\% & 0\% & 32\% [?] high school; 31\% = some college; 31\% =
college or beyond & 19\% \textless{} \$15,000; 13\% \$15,000-\$24,999;
10\% \$25,000-\$34,999; 16\% \$35,000-\$49,999; 16\% \$50,000-\$69,999;
9\% \$70,000-\$89,999; 10\% \textgreater{} \$90,000\tabularnewline
\emph{Fagbemiro, 2014} & 80 & 39.5 & Nigeria & 49\% female & 100\% & 0\%
& 0\% & 0\% & NR & NR\tabularnewline
\emph{Gill, 2013} & 91 & NR & United Kingdom & 51\% female & 25\% & 0\%
& 0\% & 75\% & NR & NR\tabularnewline
\emph{Glenn, 2012} & 33 & 51.9 & United States & 100\% female & 24\% &
15\% & 9\% & 52\% & 9\% \textless{} high school; 45.5\% = high school;
18\% = college graduate; 21\% [?] graduate school & \textless{} \$25,000
39\%; \$25,000-\$50,000 12\%; \$50,000-\$75,000 9\%; [?]
\$75,000\tabularnewline
\emph{Goldenberg, 2010} & 1,193 & 41.5 & United States & 70\% female &
16\% & NR & 76\% & 8\% & 8\% \textless{} high school; 20\% = high
school; 28\% = some college; 44\% = college graduate or beyond &
\textless{}\$20,000-[?] \$80,000\tabularnewline
\emph{Gordon, 2018} & 23 & 47 & United States & 87\% female & 100\% &
0\% & 0\% & 0\% & 4\% = high school; 35\% = some college; 39\% = college
graduate; 22\% postgraduate & \textless{} \$15,000-[?]
\$75,000\tabularnewline
\emph{Henderson, 2008} & 801 & 64.3 & United States & 43\% female & 22\%
& 0\% & 81\% & 0\% & 15\% = \textless{} high school; 25\% = high school;
32\% = some college; 28\% = college graduate & 21\% \textless{}
\$20,000; 27\% \$20,000-\$40,000; 52\% \textgreater{}
\$40,000\tabularnewline
\emph{Hurtado-de-Mendoza, 2016} & 50 & 51.15 & United States & 100\%
female & 100\% & 0\% & 0\% & 0\% & 16\% = high school; 82\% = some
college or beyond & NR\tabularnewline
\emph{Jenkins, 2009} & 38 & 32.75 & United States & 100\% female & 84\%
& 0\% & 13\% & 3\% & 8\% \textless{} high school; 24\% = high school;
68\% \textgreater{} high school & NR\tabularnewline
\emph{Johnson, 2009} & 73 & 50.56 & United States & 73\% female & 35\% &
0\% & 0\% & 65\% & NR & NR\tabularnewline
\emph{Jones, 2017} & 169 & 46.5 & United States & NR female & 100\% &
0\% & 0\% & 0\% & 27\% = college degree; 31\% = some college; 41\% =
high school & NR\tabularnewline
\emph{Kapiriri, 2017} & 10 & NR & Canada & 100\% female & 100\% & 0\% &
0\% & 0\% & NR & NR\tabularnewline
\emph{Kennedy, 2011} & 234 & 33.4 & United States & 73\% female & 100\%
& 0\% & 0\% & 0\% & NR & NR\tabularnewline
\emph{Lang, 2013} & 733 & NR & United States & 60\% female & 100\% & 0\%
& 0\% & 0\% & 3.2\% \textless{} high school; 37.8\% = high school;
12.9\% some college; 24.9\% Bachelor's degree; 16.4\% Master's degree;
4.9\% Doctoral & NR\tabularnewline
\emph{Lemke, 2010} & 49 & 45 & United States & 71\% female & 35\% & 16\%
& 49\% & 12\% & 11\% = \textless{} high school; 14\% = high school; 31\%
= some college; 35\% = college graduate; 18\% \textgreater{} post
college & NR\tabularnewline
\emph{McDonald, 2012} & 202 & NR & United States & 59\% female & 100\% &
0\% & 0\% & 0\% & 57\% [?] some college; 43\% [?] high school & [?]
\$35,000-\textgreater{} \$35,000\tabularnewline
\emph{McDonald, 2012} & 91 & 47 & United States & 45\% female & 100\% &
0\% & 0\% & 0\% & NR & NR\tabularnewline
\emph{McDonald, 2014} & 1,037 & 42.2 & United States & 53\% female &
100\% & 0\% & 0\% & 0\% & 50\% = college graduate; 50\% some college &
59\% [?] \$35,000; 41\% \textgreater{} \$35,000\tabularnewline
\emph{Mezuk, 2008} & 1,071 & 60 & United States & 63\% female & 35\% &
0\% & 62\% & 3\% & \textless{} high school - [?] high school &
NR\tabularnewline
\emph{Pettey, 2015} & 29 & 49 & United States & 52\% female & 100\% & NR
& NR & NR & 100\% [?] high school & FPL\tabularnewline
\emph{Ramirez, 2015} & 49 & 47.32 & United States & 100\% female & 18\%
& 21\% & 0\% & 61\% & 100\% [?] high school (AA); 80\% [?] high school
(Appalachian); 100\% [?] high school (Asian); 100\% [?] high school
(Latina); 100\% [?] high school (Native American) & [?]
\$50,000\tabularnewline
\emph{Rodgers, 2018} & 56 & 55 & United States & 0\% female & 100\% &
0\% & 0\% & 0\% & 7\% = \textless{} high school; 7\% = high school;
28.6\& = some college; 28.6\% = college graduate; 12.5\% = graduate
school & 5.4\% = \textless{} \$10,000; 26.8\% = \$10,000-49,000; 26.8\%
= \$50,000-\$99,000; 19.6\% = \$100,000-\$150,000; 19.6\% \textgreater{}
\$150,000\tabularnewline
\emph{Sanderson, 2013} & 205 & NR & United States & 69\% female & 48\% &
29\% & 10\% & 13\% & 18\% = College or beyond college graduate & 49\%
\textless{} \$20,000\tabularnewline
\emph{Scarinci, 2013} & 87 & 42 & United States & 100\% female & 100\% &
0\% & 0\% & 0\% & 100\% = high school & NR\tabularnewline
\emph{Spruill, 2009} & 77 & 54 & United States & 100\% female & 100\% &
0\% & 0\% & 0\% & 95\% = college graduate & NR\tabularnewline
\emph{Still, 2014} & 98 & 53 & United States & 100\% female & 100\% &
0\% & 0\% & 0\% & 9\% \textless{} high school; 40.8\% = high school;
50\% = some college and beyond & \textless{}
\$24,999-\$100,000+\tabularnewline
\emph{Streicher, 2011} & 43 & 43 & United States & 91\% female & 47\% &
49\% & 2\% & 2\% & NR & \$20,000-\$39,000\tabularnewline
\emph{Sussner, 2009} & 146 & 45.8 & United States & 100\% female & 100\%
& 0\% & 0\% & 0\% & 48\% [?] HS - 98\% [?] HS & 67\% [?] \$20,000; 30\% [?]
\$19,000\tabularnewline
\emph{Walker, 2014} & 140 & 52.5 & United States & NR female & 100\% &
0\% & 0\% & 0\% & 52\% [?] Bachelor's degree or higher; 28\% = some
college; 20\% = high school & 56\% middle income\tabularnewline
\emph{Yu, 2013} & 41 & 42 & United States & 71\% female & 50\% & NR & NR
& NR & 76\% \textless{} Bachelor's (AA), 24\% [?] Bachelor's (AA) &
\textless{} \$4,000\tabularnewline
\bottomrule
\end{longtable}

\textbf{Table 3}

\emph{Disease Area and Research Design}

\textbf{Studies included in Systematic Review, No. (\%)}\selectlanguage{english}
\begin{longtable}[]{@{}llllllllllll@{}}
\toprule
\textbf{Research Design} & \textbf{Cancer} & \textbf{Cardiovascular} &
\textbf{Diabetes} & \textbf{DNA/blood sampling} & \textbf{Epidemiology}
& \textbf{Genetic/genomic testing} & \textbf{Health-related} &
\textbf{HIV} & \textbf{Medical} & \textbf{Various} &
\textbf{Overall}\tabularnewline
Mixed-methods & ~- & ~- & - & - & - & 1 (3\%) & - & - & - & 1 (3\%) & 2
(5\%)\tabularnewline
Qualitative & 9 (24\%) & 3 (8\%) & 1 (3\%) & 4 (11\%) & 1 (3\%) & 10
(26\%) & 1 (3\%) & 1 (3\%) & & ~- & 30 (79\%)\tabularnewline
Quantitative & ~- & 1 (3\%) & ~- & ~- & ~- & 2 (5\%) & 2 (5\%) & ~- & 1
(3\%) & ~- & 6 (16\%)\tabularnewline
\textbf{Overall} & \textbf{9 (24\%)} & \textbf{4 (11\%)} & \textbf{1
(3\%)} & \textbf{4 (11\%)} & \textbf{1 (3\%)} & \textbf{13 (34\%)} &
\textbf{3 (8\%)} & \textbf{1 (3\%)} & \textbf{1 (3\%)} & \textbf{1
(3\%)} & \textbf{38}\tabularnewline
\bottomrule
\end{longtable}

\textbf{Figure 1}

\emph{Participation Barrier Themes}

{[}CHART{]}

Note. Thematic areas observed in articles included in this review
stratified by populations.

\textbf{Figure 2}

\emph{Community-Based Participatory Research Conceptual Model}\selectlanguage{english}
\begin{figure}[H]
\begin{center}
\includegraphics[width=0.70\columnwidth]{figures/image1/image1}

\end{center}
\end{figure}

Note. Sample community-based participatory reseach concept developed by
University of New Mexico Health Sciences Center.

\selectlanguage{english}
\FloatBarrier
\end{document}

