Community-Driven Research Priorities for Genetic Counseling: Shaping the Future of Genetic Counseling Research by...

Community-based participatory research (CBPR), a research approach that centers the collective strengths of community-researcher partnerships, can direct future genetic counseling (GC) research initiatives toward issues that are critical to communities most impacted by genomic healthcare disparities. Co-developed, innovative solutions to persistent research gaps may help address community access to and education about genomic healthcare. This study utilized a CBPR approach to develop a prioritized list of GC research directions that align with the goals and needs of representatives from racially/ethnically underrepresented communities in research. Twelve members from four community advisory boards (CABs) representing the Hispanic/Latino, Black/African American, Hmong, and Somali communities came together to complete three card sorting activities. Twenty cards describing research project ideas were developed through inductive qualitative content analysis of 22 meetings held with individual CABs (April 2023 to May 2025). Three members from each CAB first sorted their own CAB's project idea cards. Then, members were divided into three new small groups with one member from each CAB. Cross-CAB groups completed a second card sorting activity to identify their most important project ideas, followed by a third sorting activity to prioritize their top card. The cross-CAB identified three research priorities: (A) work with primary care clinics to encourage more people to see a genetic counselor, (B) learn which GC techniques are best according to patients and the community, and (C) investigate whether educational projects make people more aware of GC or not. By centering multicultural perspectives in the creation of a GC research agenda, the future of GC research can be better aligned with the priorities of communities and eventually support novel, tailored strategies to address genomic healthcare disparities.