数据共享是道德律令

Data Sharing Is a Moral Imperative

本文的第一部分讨论了人体生物样本数据库的性质、定义、特色、社会价值和概念模型,以及在此领域评价决策的标准,即伦理原则,认为应该包括效用、知情同意、保密、公平可及、透明和共济。第二部分讨论了数据共享的伦理学辩护,分别考查了反对和支持数据共享的伦理论证,以及数据共享引起的关切和影响数据可及的可能障碍。第三部分讨论了如何在保护隐私与数据之间保持平衡,以及伦理委员会可能在其中发挥的作用。

In the first part, the article discusses the nature, definition, characteristics, social values and conceptual model of biobank as well as the crite- ria d evaluating decision making in the area of biobank, i.e. ethical principles, which should include utility, informed consent, confidentiality, equitable access, transparency and solidarity. In the second part, it focuses on ethical justifications for data sharing, examines the ethical argument against and for data sharing, and the concerns data sharing may cause, the bmTiers which may affect data sharing. In the last part, the article discusses bow to keep bal- ance in privacy protection and data sharing, and the role which ethics committee may play in the balancing.