보건의료 빅데이터와 개인정보 보호, 주체의 자율성

The healthcare big data business has been in the spotlight recently. However, very few healthcare big data businesses have proven their utility in medical or public health. On the contrary, the possibility of personal infringement of privacy, the possibility of expanding and reproducing social discrimination and exclusion, and the likelihood of increasing social inequality are continuously raised. Especially in the context of personal data protection and autonomy of the research subjects, several legal, ethical and social issues are raised, which are indispensable elements in biomedical research. Data concerning health and genetic information are sensitive information and are related to the confidentiality obligation of medical personnel, which is the foundation of medical service provision. In view of this, more stringent data protection policies should be taken with regard to the use of health and genetic information, which is no exception to the use of healthcare big data. In biomedical research and practice, respect for the subject's autonomy is indispensable. This includes the right of an individual to exercise control over his or her use of personal information and biological materials. Research using healthcare big data is no exception in terms of ensuring the autonomy of the data subject. In order to meet the values ​​of the use of healthcare big data, protection of personal data concerning health, and respect for individual autonomy, it is necessary to promote policies based on social trust. To this end, rather than being used as a means for ‘provisional conclusion’ and ‘social consensus’, various experiments are needed to be used as devices for ‘discourse formation’ and ‘social debate’.