Patient Perceptions of Sensitive Genetic and Other Medical Information: Findings from a Cancer Survivors Survey in Japan

These findings suggest that patients' perceptions of sensitivity are closely linked to concerns about psychological, social, and ethical vulnerabilities, and may not directly reflect existing institutional access control practices. Notably, patients perceived HIV-related information as particularly sensitive despite limited institutional restrictions, whereas genetic information, though frequently restricted in hospitals, was not always perceived as equally sensitive. This divergence underscores the importance of incorporating both patient and clinician perspectives to align information governance with actual sensitivity concerns. Future studies involving physicians' perspectives could further elucidate these perceptual disparities and foster more inclusive policymaking in healthcare data management.