한국의 인간 유전체 연구에 있어 개인 프라이버시권과 국제데이터공유원칙 적용의 문제점

Abstract

This article aims to demonstrate and harmonize the conflicting issues of individual’s right to privacy protected by current laws in Korea and application of the principle of sharing that is commonly accepted principle in international human genomic consortium. The article organizes characteristics of human genomics focusing on the development of genome sequencing technology, as well as biobanks and the genomic data sharing in the international cooperation. Current laws in Korea that are applicable to human genome research are mainly ‘Bioethics and Safety Act’ that discuss the legal and ethical principles on human research, and ‘Personal Information Protection Act’ that provides the basis of protective policy on personal information. Then, this article further demonstrates the conflicts between international research ethics and the laws in Korea. Also, we have organized these issues in regard to research review process, consent, sample/data collection, sample donation, sample/data transfer, and discarding and withdrawal sample/data. Through these processes, we seek how to harmonize the right to privacy and the principle of data sharing in human genomics.