Addressing Barriers and Facilitators to African Americans’ and Hispanics’ Participation in Clinical and Genomic Research Through a Bioethical Sensitive Video

• Published in: Journal of cancer education Vol. 39; no. 4; pp. 464 - 470
• Main Authors: Churchill, Victoria, Schoenberger, Yu-Mei, Carter, Vivian L., Chevrin, Jamirah Y., Dean-Colomb, Windy, Matthews, Roland, Rivers, Desiree, Sodeke, Stephen O., Ezer, Jonathan, Rivers, Brian M.
• Format: Journal Article
• Language: English
• Published: New York Springer US 01.08.2024; Springer Nature B.V
• Subjects: African Americans; Behavior Change; Behavior Modification; Bioethics; Biomedical and Life Sciences; Biomedical Research - ethics; Biomedicine; Black or African American - psychology; Cancer Research; Clinical Trials as Topic; Educational Resources; Female; Genetic Research - ethics; Genomics - ethics; Hispanic or Latino; Hispanic people; Humans; Male; Patient Participation; Pharmacology/Toxicology; Video Technology; Clinical research; Cancer health disparities; Genomic education; Communication
• ISSN: 0885-8195; 1543-0154; 1543-0154
• DOI: 10.1007/s13187-024-02433-w

Research advances on effective methods to prevent, diagnose, and treat cancer continue to emerge through clinical and genomic research. Most clinical trial and genomic research participants identify as White which limits the generalizability of research findings to non-White populations. With the development and access to technology, digital delivery of salient and tailored health education may provide innovative pathways to increase representation of African Americans (AA) and Hispanics in research. This project focused on the creation of a bioethical sensitive education video aimed at increasing participation in clinical trials and genomic research by bringing together experts from the community, healthcare, biomedical research, and public health. The goal was to utilize existing educational resources to create a tailored message to address AA/Hispanics’ beliefs, values, and bioethical concerns related to participation in clinical and genomic research. Models of behavior change and communication theories were leveraged to frame key components of the message, which then informed the framework for the animated video. Development of the video consisted of six iterative phases: 1) writing sessions; 2) storyboarding; 3) animating; 4) screening/revisions; 5) acceptability testing; 6) finalization. The final animated video is approximately 5 min in length and covers several topics including the goal of clinical research, disparities in research participation, bioethical concerns, and genomic research regulations. Increasing AA and Hispanic participation in clinical and genomic research is imperative to achieving health equity. Tailored messages via short videos may assist in addressing the barriers and facilitators towards research participation and increase intentions to enroll in trials.