유전체 맞춤의학 ; 윤리적 규율 ; 위험 ; ELSI ; personalized genomic medicine ; ethical framework ; risk
Abstract
Personalized genetic medicine(PGM) is an attempt to understand the relationship between human genetic information and diseases, and to find a potential treatment and diagnostic method. Large research projects are under way with social concerns. ELSI research is aimed at understanding the implication of an innovative research from humanistic perspectives, and communicating the understanding with society and with scientists, thereby providing practical and concrete recommendations and guides. Of the ELSI studies, ethics of PGM research searches the value problems embedded in various perspectives on PGM and tries to answer the question whether it is permissible to implement certain types of research. A framework for ethical analysis is proposed and explained. The concept of risk in general was explored and its implication for ethical review of PGM in relation with the natures of PGM was given. The risks can be categorized: risks associated with the inherent characteristics of research/practice, risks associated with human eras and risks related social construction and (in)justice. Understanding the nature of risk will help the IRB’s reviewing the PGM researches.