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KMID : 1011120160090030045
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Bioethics Policy Studies
2016 Volume.9 No. 3 p.45 ~ p.78
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The Governance of Human Biological Materials :The Issue of Donors’ Right in the Institutionalization of the National Biobank of Korea
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Shin Mi-Yih
Park Buhm-Soon
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Abstract
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The National Biobank of Korea was established in 2008 to collect, preserve, and utilize human biological materials with the purpose of promoting public health and biomedical research. The success of this enterprise undoubtedly hinges on the size of biospecimens, including DNAs, cells, tissues, organs, and other materials from the human body. Therefore, it is crucial to warrant the participation by a large number of populations, and for that reason, it is equally important to protect donor"s voluntarism and privacy. This paper critically examines the ways in which the issue of donors’ right has been considered in the process of acquiring their informed consent. The donors should fill out the form for the informed consent, such as agreements on donation and research. Our study uncovers that donors tend to sign on the agreement sheets without fully understanding the meaning of giving up all the rights related to donated materials, or receiving enough explanation about that from the administrators. This problem has to do with the institutionalization process of bioethics laws in Korea, for which the opportunities of civic participation have been very limited. This paper suggests that we explore theoretical and practical models for more transparent administration of the biobank and for better sharing of benefits with the donors.
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KEYWORD
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Broad Consent, Relinquishing of Right, Benefit Sharing, Governance, Trade Secret Model
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