Dialogue between Patients, Public and Researchers Regarding Expectations and Concerns about Genomic Data Sharing in Research

Abstract

　Data sharing including genomic data of individual patients and research participants is essential to proceed genomic research / medicine. This genomic data sharing (GDS) has raised ethical challenges such as privacy protection and informed consents. Researchers need to develop GDS with patients and public who are potentially offer their genetic data for research and GDS activity. To gain expectations and concerns of patients and public regarding GDS, we designed a forum for a dialogue between patients, public and researchers who engaged in genomic research. As“ genome” is unfamiliar to the Japanese public and GDS was expected to difficult to discuss, the forum consisted of two parts: a lecture part and a dialogue part. While participants had great expectations to GDS in research and development for medical purpose, they showed concerns on non-medical use, data security, citizen’s literacy for genetics. Through the dialogue with researchers, participants represented several demands for researchers, such as their wish to know by whom and for what purpose their genomic data are used, and suggested practical proposals for improving GDS.