title: Privacy and Biobanking in China: A Case of Policy in Transition.
abstract: Disease-based biobanks have operated in hospitals and research institutes in China for decades, and China has recently embarked on a plan to establish further biobank networks with the aim of promoting data sharing among the existing biobanks. Although the Chinese Constitution has only recently begun to recognize individual privacy as a distinct and independent constitutional right, biobanking in China has been loosely regulated under a patchwork of sometimes overlapping laws (such as the Interim Measures for the Administration of Human Genetic Resources) and regulatory instruments, as well as and the policies of individual biobanks and networks of biobanks (such as the Shanghai Biobank Network Guidelines). A Draft Ordinance on Human Genetics Resources is currently being developed that will deal in more detail than previous laws with issues such as management measures, legal liability, and punishment for violations. International data sharing will be tightly regulated under this new law, and individual biobanks' policies such as the Shanghai Guidelines may choose to regulate such sharing even more. In contrast with national regulatory instruments, the Shanghai Guidelines also contain detailed de-identification policies, and explicitly endorse broad consent.
authors.affiliation: Associate Professor in the College of Humanities and Development Studies at China Agricultural University in Beijing. She received degrees in Philosophy of Science and Technology from Zhejiang University in Hangzhou, Zhejiang Province.
authors.forename: Haidan
authors.initials: H
authors.lastname: Chen
authors.affiliation: Researcher with the Centre of Genomics and Policy at McGill University in Montreal, Québec. He received a Master's degree in Religion and Ethics from Yale Divinity School in New Haven, Connecticut. He is currently a B.C.L./LL.B. candidate at McGill University.
authors.forename: Benny
authors.initials: B
authors.lastname: Chan
authors.affiliation: Research Director of the Center of Genomics and Policy and an Associate Professor at McGill University in Montreal, Québec. He received a Doctorate in Law from McGill University and is currently a Fonds de recherche du Québec - Santé, Junior Scholar.
authors.forename: Yann
authors.initials: Y
authors.lastname: Joly
mesh_terms: D022126:Access to Information / Q000331:legislation & jurisprudence; D018070:Biological Specimen Banks / Q000331:legislation & jurisprudence*; D002681:China; D003219:Confidentiality / Q000331:legislation & jurisprudence*; D036281:Genetic Research / Q000331:legislation & jurisprudence; D006291:Health Policy; D006801:Humans