Fan Chien-Te, Lin Jui-Chu, Lee Chung-His
National Tsing Hua University, Institute of Law for Science and Technology, Bioethics and Law Center, Hsinchu City, Taiwan.
Pharmacogenomics. 2008 Feb;9(2):235-46. doi: 10.2217/14622416.9.2.235.
Essentially, the term 'biobank' can be defined in different ways. Taking the UK Biobank's experience as the main example, the Taiwan Biobank aims to collect the DNA of a large group of people on the population base and track their health and lifestyle for at least 10 years. It is hoped that the information collected, regarding the mechanisms underlying how genes and environmental factors interact with each other to make us ill, will benefit the society in various ways, including the exploration of a new generation of treatments, support to preventive medicine discovery and also the possible benefits for the promotion of evolving public health-related industries in Taiwan. However, the involvement of large-scale population base gene data collection also triggered serious ethical, legal and social issues. In Taiwan, the challenge is even more serious than for any other biobanking experiences that have occurred previously. Among all the ethical, legal and social issues, the convergence of aboriginal people protection provided under Taiwan's Constitution imposes on the research team an obligation to create an innovative Ethical & Legal Governance Framework adaptable to the unique social background of Taiwan, including a workable public consultation/communication mechanism. In early 2005, the creation of the 'Taiwan Biobank' has been included as a part of Taiwan's strategic development in promoting the country as an island of biomedicine. In this report, the ideology, the goals and special features, government strategy, visions and, in particular, the ethical, legal and social issue planning of the Taiwan Biobank will be briefly introduced and reviewed.
本质上,“生物样本库”一词可以有不同的定义。以英国生物样本库的经验为主要例子,台湾生物样本库旨在以人群为基础收集大量人群的DNA,并对他们的健康和生活方式进行至少10年的跟踪。希望所收集的关于基因和环境因素如何相互作用导致我们生病的潜在机制的信息,将以各种方式造福社会,包括探索新一代治疗方法、支持预防医学发现以及对促进台湾不断发展的公共卫生相关产业可能带来的好处。然而,大规模人群基础基因数据收集的参与也引发了严重的伦理、法律和社会问题。在台湾,这一挑战比以往任何生物样本库的经历都更为严峻。在所有伦理、法律和社会问题中,台湾宪法规定的原住民保护的融合要求研究团队建立一个适应台湾独特社会背景的创新伦理与法律治理框架,包括一个可行的公众咨询/沟通机制。2005年初,“台湾生物样本库”的创建已被纳入台湾将自身打造成为生物医学岛的战略发展的一部分。在本报告中,将简要介绍和回顾台湾生物样本库的理念、目标和特色、政府战略、愿景,特别是其伦理、法律和社会问题规划。