Abstract
A standard for management of identifiable information in cancer registries was officially presented in the ethical guideline for epidemiological research recently proclaimed by governmental ministries. According to the guideline, identifiable information released to central registry offices should be removed from the dataset or could be attached when an ethical review committee in a registry-pa1·ticipating institution approved the registi·y protocol. Population-based cancer registries were exempted from the guidelines though it recommends the registries follow the line of management for identifiable information in the guideline. Heredita1-y cancer registries are subject not only to the epidemiological guideline, but also to an ethical guideline for human genomic research. When mutations which relate to cancer are scientifically confirmed, and are included in the subject in the registries, the registration method should follow the ethical guideline for epidemiological research; on the other hand, if the relation is not well-defined, the registration must follow the ethical guideline for human genomic research. In both cases, registration using only unidentified information would not be able to cope with successive information on relatives in long term registration . We need to investigate the methodology of registration using concealed information; e.g., encryption of identifiable information.
