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.