Community perspectives on the return of research results and ownership of data and specimens for brain tumor genomic research

This study explores community perspectives on operationalizing ethical values in genomic research involving individuals with low grade glioma (LGG) brain tumors – a condition in which genomic characterization is central to diagnosis, prognosis, and treatment. We conducted qualitative directed content analysis of data generated in the course of 11 facilitated engagement discussions conducted via a research advisory council and established brain tumor communities on social media with LGG genomic research community members—including patients, care partners, clinicians, and researchers. This analysis of data from LGG community engagement examines how operationalizing ethical values of autonomy, privacy, ownership, and relevance may guide participant recruitment, communication, and return of results LGG genomic studies. Engagement participants expressed strong support for receiving both individual and aggregate research results, viewing this as a matter of reciprocity and recognition for contributions to research. While engagement participants valued transparency and control over their data and specimens, many held misconceptions about research processes, including the clinical applicability of research findings and the logistics of specimen use. These findings highlight a gap between potential research participant expectations and current LGG genomic research practices, underscoring the need for clear communication and ethically-grounded participant engagement strategies. This analysis informed LGG genomic research participant recruitment and communication practices, including priorities for returning research results and clarifying data and specimen ownership in LGG genomic research. • Community members expect return of both individual and aggregate LGG genomic research results • Participants view data and specimen sharing as a reciprocal exchange • Misunderstandings exist about clinical relevance of LGG genomic research findings • Ethical values of autonomy, privacy, ownership, and relevance may influence a sense of trust in LGG genomic research • Clear communication is needed to align LGG genomic research practices with participant expectations