건강데이터 기증 및 공유의 윤리적 접근: 인체유래물 기증 절차를 참조하여

Abstract

Although there is a strong demand to utilize health data in the context of the data economy, there is also a strong push to protect health data for privacy reasons, which has a long history. In order to both utilize and protect health data, it is important to place it within a specific management framework. However, the current discussion about health data usage has primarily centered on the legal basis of its availability. Based on the sim- ilarity between human tissue and health data, this paper examines whether the human tissue donation procedure can be used in the health data donation and sharing procedure. First, we outline the institutional development and current procedures for human tissue donation and review the recent discussion on posthumous health data donation to exam- ine whether it can be used to share health data when the data subject is still alive. Here, it is necessary to revise or modify the human tissue donation procedure in order to make it appropriate for health data donation and sharing. To this end, the paper reviews the cell-line case to examine the points to be considered in health data donation and sharing. Based on these considerations, the paper calls for the implementation of governance for health data donation and sharing based on social recognition and the right to control health data by parties involved in data creation and management.