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.