DISP-22. Community perspectives on return of results and ownership of data and specimens in low-grade glioma genomic research

BACKGROUND Return of research results and ownership of data and biospecimens are ethically complex issues in genomic research. This study explored perspectives on ROR and data/specimen ownership among individuals affected by low-grade glioma (LGG) and other community representatives. METHODS In 2022, we conducted 11 community-engaged facilitated discussions using three platforms: a Research Advisory Council (RAC), Twitter (now X), and a private LGG Facebook group. Participants included individuals with brain cancer (including LGG), care partners, clinicians, researchers, and regulatory experts. Discussions focused on strategies for enhancing trust and participation in brain cancer genomic research and were guided by ethical principles—autonomy, ownership, privacy, and relevance. Transcripts were analyzed using qualitative content analysis. RESULTS 352 unique participants contributed to discussions. Across platforms, participants perceived continued ownership over their data and biospecimens and emphasized a strong expectation of reciprocity: contributing data and biospecimens should be met with access to both individual and aggregate research findings. Individuals with LGG viewed return of individual and overall research results as a means of maintaining autonomy; they saw individual results as highly relevant for making informed medical decisions, even when results lacked clinical validation. Trust in researchers to protect privacy was high. While researchers and clinicians also acknowledged the value of returning results, they expressed concerns about returning results prematurely, especially when clinical significance was unknown. CONCLUSIONS As part of an ethical research partnership, participants in LGG genomic research have an expectation of reciprocity: in return for sharing their health information and biospecimens, they expect access to both individual and research results. Despite limitations in clinical validity and contradictory policy, return of results is seen as empowering, personally relevant, and a way of recognizing participants’ contributions to scientific advancement. Addressing these expectations may enhance trust and participation in genomic research.