Abstract

In 1998 China’s Ministry of Science and Technology established two national human genome research centers. The two national centers, in Beijing and Shanghai, together with many other genetic facilities at the provincial level, have announced the establishment of several special disease-related databases. In particular, Chinese geneticists have constructed the database for genomic polymorphism of the 56 Chinese ethnic groups.Biobanking practices can raise a number of ethical challenges. Those challenges concern the participating individuals’ trust, confidentiality regarding their personal information and the question of who should benefit from commercial gains arising from genomic research, issues of privacy, informed consent, traceability and feedback of participating research subjects and issues of international collaboration.For example, in a workshop, a scientist of the Wenzhou Medical College described some of the many challenges his college faced when they started to set up a biobank. Some consent forms did not strictly follow international standards. The situation of national standards for China was unclear. There was no quality control for some sample collection and processing. There were no facilities with well-controlled environmental conditions to store samples permanently. They also sought to establish standards for operational procedures, including sample collection and preservation, as well as clinical information management.This paper discusses the ethical issues of Chinese biobank from the Chinese point of view, while the biobank is still developing, rather doing so after it is developed