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

Our previous findings indicated that hospitals frequently restrict access to genetic information, while access to other types of sensitive information-such as psychological counseling records or infectious disease diagnoses-is limited in a smaller proportion of facilities (Suzuki et al., 2023). This practice, grounded in a paternalistic medical framework, highlights the need to incorporate patients' perspectives into future information governance. Therefore, this study aimed to explore how individuals with a history of cancer perceive the sensitivity of various types of medical information, as well as their expectations regarding access control and information sharing.

We conducted a questionnaire survey among 1,079 cancer survivors, using vignette-style hypothetical scenarios to assess their perceptions of medical information sensitivity and preferences for access restrictions in clinical practice. Participants evaluated 13 types of information that had previously been subjected to restricted access in actual hospitals.

Of the participants, 639 (59.2%) believed that some types of medical information are more sensitive than others. Human immunodeficiency virus (HIV)-related information (64.3%) and information on refractory genetic disorders (57.0%) were most frequently identified as requiring strict access control. Genetic information on hereditary tumors was perceived as significantly less sensitive than that on refractory hereditary diseases (p < 0.05). Only a small fraction of participants believed that such restrictions were unnecessary.

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.