Genomic Data Sharing and Privacy in China

Abstract

The study reviews the privacy implications of recent regulatory developments in China regarding the sharing of genomic data. The collection, storage and sharing of Chinese human genetic data are governed for almost two decades by the Interim Measurements for Human Genetic Resources Administration 1998. The fact that such measures were jointly issued by the Ministry of Science and Technology and Ministry of Health reflects the dual nature of genomic data: they are critical information concerning an individual’s health and identity, on the one hand, and invaluable resources for biomedical research and industry, on the other. The dual nature contributes to the compartmentalisation of regulatory approaches and protracted making of a unitary law. With the 2012 Draft Regulations on Human Genetic Resources yet to be enacted, a series of policy initiatives have been undertaken to promote data-driven biomedical research and safeguard national genetic resources. Though these initiatives have improved privacy protection in genomic data sharing, the dual nature of such data remains to be more fully appreciated, and the value of individual autonomy better supported by operable rules.