Abstract A18: To bank or not to bank: Engaging community members in discussions about biobanking

Abstract

Abstract Background: Efforts to develop personalized medicine and individualized cancer care must be undertaken with widespread participation in biobanking especially among ethnic/racial populations that disproportionally experience excess burden of cancer incidence and mortality. The concept of biobanks is thought to be a promising way to identify the links between genetic and environmental factors in relation to disease, particularly cancer. Yet there is skepticism among the general public about the purpose of these repositories. If public engagement, understanding, and trust are established, biobanks may serve as an important resource to address issues of limited generalizability that are present in current clinical and genomics research. This research describes a series of community engagement processes and formative research activities (phase I), part of an ARRA pilot project to assess community attitudes, perceptions, beliefs, and informational needs on human biospecimen collection and biobanking. Congruent with the goals of the parent grant, the Tampa Bay Community Cancer Network, an NCI-funded community networks program for tackling health disparities, this project supports the development of collaborative community-academic linkages resulting in tools that limit and/or eliminate barriers to closing the gap on cancer health disparities. Methods: Interactive activities undertaken to engage community members on the topic of biobanking included educational presentations, a biobanking tour, and formation of a Community Advisory Group (CAG). The CAG, comprised of key community stakeholders, provided ongoing feedback on study methods, recruitment strategies, focus group content, educational materials, and offered important community insights about biobanking. It is expected that these activities will add to a growing community level of understanding of biobanking as “opening new pathways for researchers to bring about new treatments.” Currently underway are a series of 12 focus groups and 10 key informant interviews examining community members’ knowledge and attitudes about biospecimen collection; motivations toward research participation; ethical concerns; and learning preferences for the topic. Results: Data gained from this formative research phase will aid in identification of strategies to effectively frame educational messages with deference to health literacy, cultural competency, and encourage informed decision making (phase II). In keeping with a community-based participatory approach, study outputs include: 1) a CAG that could be used to advise future studies and inform policies on biobanking research; 2) a set of educational communication tools for advancing understandings about biomedical technologies in an easy-to-understand manner; and 2) linkages to Minority Biospecimen/Biobanking-Geographic Management Program Regional initiatives (BMap-GMap). Conclusion: Use of community engagement methods to improve communications on biospecimen collection/biobanking is one way to bring constituents’ voices into discussions and influence the way biobanks are implemented. It is expected that public engagement from idea conception to implementation will prove central to mobilizing community participation in biobanking. Future studies are expected to test the efficacy of these tools for decision priming. Citation Information: Cancer Epidemiol Biomarkers Prev 2010;19(10 Suppl):A18.