A Community-Engaged Approach to Enhancing Participation in Genomic Research in Rare and Understudied Cancer Populations

Abstract

Few studies provide insights on how to incorporate community members' perspectives of genomic research during the early phases of study development. Engaging with community members early and consistently throughout the research lifecycle could help identify and mitigate barriers to genomic research participation, particularly among groups with rare and understudied cancers.

Methods: The Washington University Participant Engagement and Cancer Genome Sequencing (WU-PE-CGS) study formed a Participant Engagement Advisory Board (PEAB) consisting of patients, patient advocates, and patient advocacy organizations who represented the three understudied cancer populations: cholangiocarcinoma, early-onset colorectal cancer in Black Americans, and multiple myeloma in Black Americans. PEAB members were involved in PE-CGS from the time of the grant submission and provided input on key study procedures by participating in monthly project meetings and serving on the leadership team. PEAB recommendations are described in this process paper.

Results: The PEAB provided key feedback on recruitment, consent, and survey development. Recruitment optimization focused on making the script more concise, tailoring to participant's locale, and providing clearer participation expectations. Consent improvements prioritized key information, addressed data protection, and clarified the process of returning genetic results. Survey enhancements included refining scientific terminology and ensuring inclusivity across the cancer continuum.

Conclusions: The PEAB provided valuable feedback that improved the development and implementation of WU-PE-CGS research processes. Incorporating the PEAB's suggestions helped ensure that patients with rare and understudied cancers were successfully enrolled into the WU-PE-CGS. The PEAB will continue to contribute throughout all study phases.

Keywords: cancer; community-based participatory research; community-engaged research; genomics.