Formative Research on Perceptions of Biobanking: What Community Members Think

Abstract

Preparing healthy community members with timely communications prior to engaging them in a request to donate biospecimens promises to improve the experience of biobanking participation. To this end, a qualitative study was conducted to assess community member knowledge, attitudes, beliefs, and informational needs about cancer-related biospecimen collection in a large metropolitan area in southwest Florida. The study utilized purposive sampling techniques to recruit a total of 95 participants to participate in 12 focus groups, segmented by race/ethnicity and language preference (mixed race, African American only, and Spanish speaking) and age (18–29, 30–54, and 55 and older). Focus group interviews were analyzed using content analysis to identify emergent themes. Overall, participants in the 30 years and older groups were favorable toward participating in biobanking if their concerns were addressed, such as confidentiality and consent issues, in contrast to participants aged 18–29 who were more skeptical. For all participants, the desire to participate in research that seeks new cancer treatments outweighed mistrust. Moreover, many cited the potential scientific benefit for future generations as a primary motivator. Finally, in some groups a therapeutic misconception was expressed, where participants expressed a willingness to forego confidentiality of their health status in exchange for therapeutic benefit. This study contributes to the literature on community perceptions of the benefits and barriers of biobanking and adds to the development of meaningful education communication priming tools to advance understandings about biobanking.

Differences in preferences for models of consent for biobanks between Black and White women

“…However, previous studies have found that African Americans (Chen et al 2005;McQuillan et al 2006;Scott et al 2010), Hispanics (Scott et al 2010), and younger adults (Luque et al 2012;McDonald et al 2013) are less supportive of biobank research or less willing to donate a biospecimen for secondary research use. More empirical research is needed to address preferences for models of consent for secondary research use of biospecimens among potential donors.…”

“…More empirical research is needed to address preferences for models of consent for secondary research use of biospecimens among potential donors. Of particular concern is the lack of data from groups underrepresented in research (Luque et al 2012;Pentz et al 2006), including racial and ethnic minorities and individuals with limited educational attainment (Beskow et al 2001;Jeffers 2001;Kaufman et al 2012;Stephenson 1996). It is critically important to understand the preferences for models of consent for secondary research use of biospecimens of diverse individuals, because participation of all population subgroups in biobanks is essential to reach translational research goals (Meslin and Quaid 2004;Moodley et al 2014;Pentz et al 2006).…”

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.…”

“…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. Two of these qualitative studies found low awareness of biobanking initiatives and uncertainty about the process (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. Two of these qualitative studies found low awareness of biobanking initiatives and uncertainty about the process (Luque et al 2012;Rodriguez et al 2013). Quantitative studies which have been conducted with Hispanic participants have explored the influence of acculturation on willingness and donation of biospecimens for research (Lopez et al 2014), misconceptions about receiving personal health information as part of participation (Knerr and Ceballos 2015), and factors associated with prior knowledge of biospecimen research (Loffredo et al 2013).…”