바이오뱅크의 바람직한 운영을 위한 공론화의 필요성

초록

We argue that there are a number of important ethical, institutional, and cultural issues we need to examine for the successful operation of a biobank, which is recently pursued by many countries. A biobank requires the commitments of lots of people for a long period of time, and the information gathered there are diverse, and some of them, sensitive. Also, the informed consent for a biobank has to be quite comprehensive due to the intrinsically uncertain nature of the future research related to it, and social, due to the unique characteristics of genetic information. These facts suggest, we claim, that a biobank poses additional ethical challenges to those of conventional biomedical research. In order to tackle the challenges, we argue, it is crucial to establish proper social support for the biobank research and trust in its management. We discuss British and Japanese approaches to a biobank in contrast to Iceland's and Tonga's approaches, illustrating our claims. We also discuss the limitations of conventional anonymization in the case of biobanks, and consider the 'open consent' strategy of the Personal Genome Project as a potential alternative.

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