Benefit-Sharing on Population-based Biobank: From the Angle of John Rawls’ “Theory of Justice”

• Main Authors: Shih-Ya, Lu, 陸詩雅
• Other Authors: Shing-I Liu
• Format: Others
• Language: zh-TW
• Published: 2009
• Online Access: http://ndltd.ncl.edu.tw/handle/75983563839509458251

碩士 === 國立臺北大學 === 法律學系一般生組 === 97 === Since the completion of the Human Genome Project in 2003, biomedical research begins to focus on understanding the functions of genes and probe thecomplex interplay between genetic and environmental factors in causing commondiseases. Taiwan also launched the Taiwan Biobank project. While commercial involvement is almost inevitable, it is an important issue to maintain public trust, in the mean time to distribute interest reasonably. We can see from the Moore case and Greenberg case, the unlimited acknowledgement of the patent right derived from biotech product might induce following effect: the commercialization of human body might induce moral hazard; unjust distribution of the interest from biotech’s patent right might hinder the following research and study. In Moore case, judge Mosk also point out that the mechanism of informed consent seems not enough for the protection of those tissue providers. In order to solve the problems mentioned above, this article tries to discuss this issue from the angle of Benefit-Sharing. Through this angle, this article points out that justice is a central issue. Therefore, this article tries to review this issue for John Rawls’ “the theory of justice”, and find a justice model to share the benefit from population-based biobank. According to theory of justice brought out by Rawls: The first principle requires the law provides sufficient protection for the fundamental right of the concerning parties involved population-based biobank. This article tries to compare two different kinds of distribution model under the difference principle. First kind of model: acknowledge that the tissue provider can share property rights derived from the research. Second kind of model: instead of acknowledging tissue providers’ property rights from participating population-based biobank, the law will provide other kind of mechanism to reach the justice distribution of the research and to match the requirement of the principle of Benefit-Sharing. The second kind of distribution model inserts that benefit-sharing should not be limited to those individuals who participated in such research. Also, benefit sharing can take different forms and is subject to varying societal and cultural values. It is not necessarily monetary. The research data based on population-based biobank should be public in the public domain. Through the methods mentioned above to achieve reasonable research results’ distribution. This article holds that the second kind of distribution model will much fit in with the principle of difference. As a result, this article suggests that the draft of Human Biobank Administration Act should have a more concrete requirement for the instructor of population-based biobank and the user of it, such as researchers, research institution, and commercialized company to share the benefit. Though this to fulfill the principle of Benefit-Sharing. Moreover, the official authority may declare standard contract of accessing population-based biobank to make sure that requirement mentioned above to reach the goal of Benefit-Sharing.