[A report on symposium, "protection for personal information in epidemiological research and cancer registry"]

A symposium on protection of personal information in epidemiological research and the compilation of a cancer registry was held at the National Cancer Center, Japan, on March 16, 2000. Participants discussed the use of personal health information in epidemiological research activities such as the compiling of a cancer registry to protect personal information. Legislation in Japan is pending in the near future. A total of thirteen domestic and foreign speakers and commentators shared opinions from various viewpoints and discussed the issue. It was proposed that protection regarding personal information should be legislated as soon as possible for the development of cancer registry; patients could be exempted from informed consent for utilization of personal health information, in particular, in public health activities such as the complication of a cancer registry and epidemiological research with the approval of an ethics review board; ethical guidelines including these steps should be established in Japan. An appropriate system of protection of personal information should be established through constructive discussion at frequent meetings and symposia which are open to the citizenry.