Abstract A06: Project 4B: Developing a web-based bioethics and biobanking curriculum for biomedical and bio-behavioral researchers
Authors: Sehovic Ivana , Quinn Gwendolyn P. , Gwede Clement K. , Meade Cathy M. 
Published: May 2015

Background: Participation in biobanking initiatives among individuals with familial risk for hereditary cancer (IFRs) and other vulnerable healthy populations, such as individuals from underrepresented multi-ethnic communities, is vital to further clinical and genomics research. Previous research conducted with the IFR population revealed unique concerns regarding confidentiality, loss of privacy, and discrimination that were discordant with researcher perceptions and attitudes. Focus groups conducted with vulnerable community members revealed major barriers to biospecimen donation, such as mistrust of researchers due to historical abuse and fears of cloning and invasive procedures. To address gaps in researcher understanding, the purpose of this project was to develop a novel training curriculum for researchers to improve their knowledge of IFR and other vulnerable populations' perceptions about biobanking.

Methods: Previous research conducted with IFRs, vulnerable community members, and biomedical and bio-behavioral researchers provided the framework for identifying researcher learning preferences and key domains for the development of case studies. A “Project 4B: Bioethics and Biobanking Training for Biomedical and Bio-behavioral Researchers” website was created as a platform for this curriculum which includes Project 4B research results, five case studies and quizzes, definitions, resources, and associated publications. Researchers were recruited via email nominations to pilot test the training website. Researchers completed six evaluation forms – five forms for each of the case studies and one form for all other sections of the website. We evaluated the website in terms of: case study effectiveness, relevance, clarity of post-test questions, and accompanying dialogue animations. Researchers also evaluated website aesthetics (fonts, colors, and images) and other sections (resources, discussion forum, and publications).

Results: A total of 14 researchers evaluated the website and five case studies under these domains: privacy and confidentiality, communication of personal results, communication of overall results, informed consent, and community mistrust and fear of cloning and genetic research. For each case study, the majority either strongly agreed or agreed that the case studies were easy to understand, adequately addressed the issues for that domain, and contained appropriate post assessment questions. Suggestions for improvement included providing more examples and more challenging post-test questions. Although the dialogue animations were perceived as interesting and novel by the majority of researchers, they agreed that these animations would not neither improve nor distract from understanding of case study content.

Conclusion: Participation in biobanking among minorities and underserved populations is crucial to reducing cancer health disparities. One way to improve participation is to educate researchers about the concerns of these populations. A web-based bioethics and biobanking curriculum with animated case studies is a feasible and acceptable way to provide information to researchers about IFR and other vulnerable community members' participation in biobanking and biospecimen donation. Future plans will focus on incorporating the Project 4B website and curriculum with other educational organizations to ensure wider dissemination of material.

Citation Format: Ivana Sehovic, Gwendolyn P. Quinn, Clement K. Gwede, Cathy M. Meade. Project 4B: Developing a web-based bioethics and biobanking curriculum for biomedical and bio-behavioral researchers. [abstract]. In: Proceedings of the Sixth AACR Conference: The Science of Cancer Health Disparities; Dec 6–9, 2013; Atlanta, GA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2014;23(11 Suppl):Abstract nr A06. doi:10.1158/1538-7755.DISP13-A06