Protecting Minority in Biobank: Collective Consent and Public Participation
Date Issued
2011
Date
2011
Author(s)
Chang, Yu-Jui
Abstract
In the field of genetic research, the concern about group interest has been in continuous discussion since twenty years ago. With the need of gene for research, western countries became to focus on the people of developing and underdeveloped countries for their valuable gene resources. All this countries proceed their genetic research using “group” as a unit, not “individual”, making not only individual but also whole group in peril.
Besides the genetic exploitation done by developed countries towards developing or least-developed countries, administrative authorities would often conduct genetic exploitation towards minority groups within the country. This kind of exploitative relationship in genetic research reaches its peak in the context of establishing Human Body Biological Database, or simply, “Biobank”. Through collecting human gene, biobank makes endeavor to find out the reasons of disease and try to prevent it. Unfortunately, the asymmetry of knowledge and power makes the situation worse. Although traditional bioethics tries to solve the problem by applying informed consent system, there are still many problems on questions reside in whether informed consent is enough for protecting minority when minorities face genetic exploitation. These are the questions we do need to ponder on.
In the beginning, this thesis tries to illustrate the concept of biobank and minority. After the illustration, we compare different biobanks in global perspectives. The intention is to realize what kinds of consent systems these countries use in genetic research. The result shows that group consent was not adopted by any countries in the world. After that, this thesis begins to examine the problems lie in informed consent system, trying to construct the theory of group consent to improve it. Moreover, from the perspective of public participation, this thesis tries to understand how to protect minority in domestic policy.
We deeply believe that the nature of gene is between person and person, and we share our gene with others in any circumstance. Biobank collecting their gene tissues uses group as a unit. Therefore, all this evident shows that, in biomedical research, group is never inferior to a single person.
Subjects
gene
biobank
minority
informed consent
group consent
public participation
SDGs
Type
thesis
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