General Consent Issues in The Establishment of Biobank
Date Issued
2009
Date
2009
Author(s)
Liao, Chia-Cheng
Abstract
Following the completion of Human Genome Project, the research of genetic medic has turned to a new page. Benefiting from the improvement of information technology, the establishment of population-based genetic database has become feasible, which also brings new ELSI issues. In Taiwan, based upon the well developed household registrations and medic records, Taiwan Government has initiated the Taiwan Biobank project, which intended to build a long-term researching resource for medic study. However, disputes and doubts over the adoption one-time consent for the unforeseen future research, so called general consent, are still unresolved.his article attempts to provide another approach to examine the consent issue in biobank. By reviewing the ethical principles, this article first introduces the background of the consent issues arising in the field of medic research, and further highlights the differences between general consent and the traditional model of informed consent. After gaining better understanding to the background, this article furthermore examines the relevant international guidelines and compares different consent models in biobank among different countries.or solving issues surrounding general consent, this article opines a revisit to the concept of autonomy is needed. In modern bioethics, the concept of autonomy has been so narrowly interpreted as a form of independence, or at least as a capacity for independent decision and action. However, putting so much emphasis on these perspectives shall bring no good to the development of trust between researcher and participants. As such, this article holds the position that autonomy should be construed on the basis of trust, especially in the context of bioethics. Under this approach, respect of autonomy shall not be merely the pursuit or reserve of independent or individual choices made by participants, but to rebuild trust between researchers and participants. Following this context, the purpose of informed consent doctrine, as far as this article is concerned, is to promote the communication and understanding between researchers and participants, and in turn reestablish trust. s per aforementioned discussion, this article argues that under certain circumstances, one-time consent in biobank shall be acceptable and reasonable in practice, because adopting rigid type of informed consent may sometimes improperly deepen the gap and limit the potential choices between researcher and participants, which contradicts the vary purpose of informed consent. At the mean time, this article also provides certain measures to act as counter-balance to justify the ethical base of general consent, and review the existing regulations in Taiwan, with an attempt to form better basis for further debates on this matter.
Subjects
gene
genetic information
biobank
autonomy
informed consent
general consent
Type
thesis
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