Engaging diverse populations about biospecimen donation for cancer research

Abstract

Clinical research increasingly relies upon the availability of appropriate genetic materials; however, the proportion of biospecimens from racial/ethnic minority patients and healthy controls are underrepresented, which preclude equitable research across all patient groups for cancer treatment. National Cancer Institute-funded Community Network Program Centers in California, Florida, and New York collaborated with local community partners to conduct three independent formative research studies with diverse (African American, Asian American, Hispanic, and White) participants to explore their knowledge, attitudes, and beliefs about biobanking, and their experiences with the donation of biospecimens. Our findings demonstrated similarities in overall low knowledge and understanding about the use of biospecimens for research. This was exacerbated for nonEnglish speakers. Racial and ethnic groups differed with regard to a number of factors that are obstacles for participation, e.g., continuing medical mistrust (African Americans), lack of benefit (Hispanics), apprehension about the physical toll of donating (Vietnamese), usage of biospecimen for research (Hmong and Chinese), and suspicion of exploitation by corporate entities (Whites). However, participants uniformly reported general interest and willingness to participate in biobanking for altruistic purposes, particularly to benefit future generations. This interest was framed with a strong admonition that donations should be accompanied by transparency about study sponsorship and ownership, distribution and use of biospecimens, and study information that fit participants' backgrounds and experiences. This cross-cultural regional analysis offers significant insights into the similarities and variations in opinions and perceptions about biobanking and the collection of biospecimens for use in cancer research.

Views on clinical trial recruitment, biospecimen collection, and cancer research: population science from landscapes of the Haudenosaunee (People of the Longhouse)

“…Additionally, Dang et al [2] provided a cross-cultural comparison of three distinct community sites across the USA that collaborated with their local communities on the topic of biospecimen donation participation for cancer research. The sites partnered with participants from African American, three Asian American ethnic groups, as well as diverse Hispanics, and Whites.…”

“…These centers in collaboration with their respective communities examined cognitive, communication, and sociocultural factors affecting biospecimen donation participation. Impediments to community participation in biospecimen donation for cancer research varied by the population(s) studied and included factors concerning cultural beliefs regarding blood or tissue to be donated; some community members described the feeling that research uses them as test monkeys; and others expressed a fear of blood and needles as a deterrent for donating [2]. …”

Development and validation of the biobanking attitudes and knowledge survey-Spanish (BANKS-SP)

“…Recently, findings from a survey of repository facilities, in the Midwest and Northwest USA, indicated that only 1.3 % of collected biospecimens were from Hispanic participants, compared to 89 % of biospecimens from White participants, and that about half of the surveyed facilities had made efforts to collect biospecimens in their communities (Simon et al 2014). There is an expanding body of literature that documents the significant efforts to engage ethnically and racially diverse communities in biospecimen research across the US (Braun et al 2014;Cohn et al 2014;Dang et al 2014;Dash et al 2014;Erwin et al 2013;Lopez et al 2014;Luque et al 2012;Rodriguez et al 2013). To date, only a few studies have explored biobanking awareness, perceptions, beliefs (Hohl et al 2014;Luque et al 2012;Rodriguez et al 2013), willingness to donate biospecimens (Hohl et al 2014;Lopez et al 2014), and attitudes toward biobanking (Hohl et al 2014) among Hispanic populations in the US.…”

Introducing Biospecimen Science to Communities: Tools from Two Cities

“…1–6 In light of the emergence of biospecimen science and the value of samples from diverse populations, two CNPCs—the Tampa Bay Community Cancer Network (TBCCN) and Western New York Cancer Coalition (WNYC2)—realized that educational tools could address an information gap for educating “healthy community members” about this topic. Creating greater understandings about biobanking—for example, What is it?…”

“…1,10 As such, our two CNPCs embarked on separate but unified journeys to improve understandings and cultural and literacy sensitivities about a new developing technology in oncology, namely, biobanking/biospecimen donation and research. Such communication priming tools could help community, academic, and clinical partners to engage their constituents when making a decision if or when approached to participate in biospecimen donation.…”