Abstract A28: Enrolling African Americans into a cancer-related biobank
Authors: Lawson Fahcina P. , Folawiyo Oluwasina , Pirini Francesca , Valle Blanca L. , Sidransky David , Ford Jean , Erby Lori , Guerrero-Preston Rafael 
Published: October 2015

Background: Biobanks serve as essential resources for genetic and public health research. Despite their potential utility in elucidation of cancer susceptibility and development of novel cancer surveillance, diagnostic, and therapeutic approaches, most genomic research studies rely on samples with limited ethnic diversity. There is also a suggestion that disparities in participation in cancer biospecimen research have already translated into fewer efficacious treatments for under-represented groups. Inclusion of more diverse populations in biospecimen banks could ultimately contribute to a reduction in disparities in cancer morbidity and mortality that adversely impact U.S. minority groups.

Research Objectives: We hypothesized that a deliberative group consent process related to cancer biobank donation would increase African American community engagement, foster an open dialogue between community members and researchers present at the discussion, allow participants to have their concerns addressed, and improve community members' knowledge and attitudes, leading to donation of biospecimens.

Methods: We employed a two-stage study design. During the first stage, the Johns Hopkins Center to Reduce Cancer Disparities (JHCRCD) used a Community Based Participatory Research (CBPR) framework that explored the knowledge and attitudes of African American adults in Maryland regarding participation in a cancer biospecimen repository. We completed eight focus groups with primarily African American communities in Baltimore City and Prince George's County.

Results: Stage-one results indicate that African American residents of Baltimore and Prince Georges County face limited understanding and lack of awareness in genetics and genomics. Our baseline analyses revealed limited community knowledge about biobanking and initial reluctance to donate biospecimen samples. Some participants expressed distrust in the research enterprise. After some discussion, however, participants were able to identify personal, familial, and societal benefits to participation. Moreover, focus group participants identified a number of strategies to overcome concerns and to enhance participation, including mechanisms for enhanced communication with researchers and suggestions related to building the biobank's community presence. In spite of initial concerns expressed during the focus groups, most participants stated their willingness to donate a specimen in the future if their concerns were properly addressed.

Conclusions and Next Steps: Future reductions in cancer morbidity and mortality among minority groups will depend upon increasing the diversity of populations donating samples. The proposed project will provide data to support early communication and transparency to build community trust from the earliest stages of the cancer research process. Stage two of the project will commence in September of 2014. During the second stage, we propose: (a) To examine the impact of a deliberative group consent process on community members' attitudes and knowledge related to donating specimens to a pilot cancer biobank; (b) To identify participant characteristics (including genetic literacy, educational status, gender, personal cancer history, family cancer history, attitudes, and knowledge) that predict actual donation to a pilot cancer biobank; and (c) To create a pilot (small scale) cancer biobank with samples from the African American community for use in future genomic and epigenomic studies

Citation Format: Fahcina P. Lawson, Oluwasina Folawiyo, Francesca Pirini, Blanca L. Valle, David Sidransky, Jean Ford, Lori Erby, Rafael Guerrero-Preston. Enrolling African Americans into a cancer-related biobank. [abstract]. In: Proceedings of the Seventh AACR Conference on The Science of Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; Nov 9-12, 2014; San Antonio, TX. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2015;24(10 Suppl):Abstract nr A28.