Barriers and Strategies to Participation in Tissue Research Among African-American Men

Abstract

Before the burgeoning field of biospecimen collection can advance prevention and treatment methods, researchers must access diverse molecular data samples. However minorities, especially African American men, remain reticent to join these studies. This study, using theory based approaches, investigated African American men’s barriers to participating in biorepository research. Fourteen focus groups were conducted among 70 African American men (ages 40 to 80). The groups were stratified by prostate cancer history and educational attainment background. Participants identified perceived factors that promoted or hindered study participation when questioned about their knowledge and attitudes about biospecimen research. Ninety-four percent of participants indicated never participating in a study that collected biological samples. Barriers to their participation included lack of knowledge and understanding regarding biospecimen research practices and uses. In addition they extensively cited a prevalent mistrust of the medical community and discomfort with study recruitment practices. African American males were more willing to participate in biorepository studies with physician endorsement or if they understood that participation could benefit future generations. Men also wanted more recruitment and advertising done in familiar places.

A Review of African Americans’ Beliefs and Attitudes About Genomic Studies: Opportunities for Message Design

“…We found a shadow of historic and continued injustice cast across studies. Distrust was ubiquitous in all facets of the research enterprise and extended from members of the research and medical communities (Skinner et al, 2015; Drake et al, 2017; Kraft et al, 2018), to medical or research institutions (Drake et al, 2017; Kraft et al, 2018), and the conduct of research and science in general (Skinner et al, 2015). The Tuskegee Study of Untreated Syphilis frequently functioned as a historical referent for the distrust of biomedical research, particularly among African Americans (Hoyo et al, 2003; Bates and Harris, 2004; Cohn et al, 2015; Kraft et al, 2018).…”

“…One study found African Americans were significantly more concerned that something like Tuskegee could happen again than white participants (Hagiwara et al, 2014). More specific to genetics, revelations about Henrietta Lacks, and more recent and local race-related abuses by researchers, raised concerns about trust, privacy and the benefits of genomic studies (Buseh et al, 2013; Drake et al, 2017; Kraft et al, 2018; Lee et al, 2019). The impact of race-related injustice was apparent in two multi-race studies that found distrust was more salient among African American participants compared with their white counterparts (Bussey-Jones et al, 2010; Hagiwara et al, 2014).…”

“…Awareness and knowledge of genomics, or a desire to learn more were associated with favorable attitudes toward genomic studies and/or intentions to participate (Hoyo et al, 2003; Ochs-Balcom et al, 2011; Cohn et al, 2015; Jones et al, 2017). Conversely, lack of education, understanding, awareness or knowledge were associated with less favorable attitudes and lower intentions to participate (Hoyo et al, 2003; Bates and Harris, 2004; Ochs-Balcom et al, 2011; Skinner et al, 2015; Drake et al, 2017). Participants noted that information about research studies was not readily available in their communities, or that African Americans are often not approached or asked to participate (Drake et al, 2017).…”

Factors associated with willingness to provide biospecimens for genetics research among African American cancer survivors

“…Research has suggested that the environment in which recruitment and the study is conducted may have an impact on males' willingness to participate in biospecimen research (Drake et al 2017). Given the fact that this study was conducted within the Howard University network, and heavy recruitment took place within the cancer center, it is possible this may have influenced African American males' willingness to engage in biospecimen and cancer genetics research more than women.…”

Factors Influencing Participation in Biospecimen Research among Parents of Youth with Mental Health Conditions

“…Recent studies focused on attitudes and beliefs about participating in biospecimen research of diverse populations overwhelmingly suggest that participants report interest and willingness to participate in biobanking for altruistic purposes, particularly to benefit future generations [59][60][61][62]; this was certainly the case for the parents of youth with ASD and BPD. Also consistent with prior studies, our participants noted the importance of convenience and accessibility -and that they would be much more likely to donate a biospecimen if they could do so from home or during a routine healthcare encounter.…”