Current Status and Issues of Medical Archives in Japan:

The Situation with Reference to the Historical Medical Records of Hansen’s Disease

Abstract

  This paper explores the current status of preserving medical/patient records in Japan and providing them for public use, focusing in particular on issues relating to the medical records preserved in Hansen’s disease sanitaria, as per Japan’s present laws concerning official documents (in particular, the “Public Records Management Act” enacted in 2009) and those on personal health information. First, I introduce the basic approach to archival practice developed as a global standard—including the difference between “institutional archives” and “collecting archives”—as a theoretical background for the preservation and application of the medical/patient records and materials kept in Hansen’s disease sanitaria in Japan. Second, I explain how around the world scholars of the social history of medicine increasingly recognize that the demand for medical/patient records and their value is both the basis for and evidence of the growing trend for research into the “history of patients”. Medical/patient records that have been made and stored in each sanitarium in Japan would have many potential users if they became properly available for historical research and other activities. Lastly, this paper proposes some solutions to the problematic points of using medical/personal records for historical research—issues concerning privacy, research ethics, and reproduction of stigma—that are applicable to medical/patient records of Hansen’s disease sanitaria in Japan.