人脑组织库及其伦理问题研究

The Ethical Issues of Human Brain Banks

脑库以离体人脑作为获取和研究对象,使得其实施过程面临诸多独特的伦理问题。脑库的伦理问题可从实质伦理和程序伦理两方面做出界定与分析。实质伦理问题关注获取和使用人脑之“应不应该”,其中最重要的理论基础是人脑本体论和道德价值。脑库的实质伦理问题包括使用人脑的伦理隐忧、尊重人的问题和风险/受益权衡的不确定性问题。脑库的程序伦理问题则聚焦实施过程中“应该如何做”的问题,包括履行有效知情同意的问题、脑组织商业化、分配和脑库可持续性问题、人脑组织样本的归属、成果共享和知识产权问题、回报和受益公正问题、数据安全和个人隐私保护问题、遗传信息告知义务问题以及样本使用率和剩余样本的处理问题。

Brain banks use the isolated human brain as the object of acquisition and research,which makes the process of its implementation face many unique ethical issues.The ethical issues of brain banking can be defined and analyzed in terms of substantive ethics and procedural ethics.Substantive ethical issues focus on the“should and should not”of acquiring and using the human brain,of which the most important theoretical basis is the ontology of the human brain and moral values.Substantive ethical issues of brain banking include ethical concerns about the use of the human brain,respect for human beings,and uncertainty about the risk/benefit trade-off.Procedural ethical issues of brain banking focus on the“how to”of implementation,including issues of valid informed consent,commercialization of brain tissue,distribution and sustainability of brain banks,ownership of human brain tissue samples,sharing of results and intellectual property rights,fairness of rewards and benefits,security of data and protection of privacy,obligations to inform about genetic information,and samples.The issue of the obligation to communicate genetic information,as well as the issue of sample utilization rates and the disposal of surplus samples.