Governing International Biobank Collaboration: A Case Study of China Kadoorie Biobank. (November 2013)

• Record Type: Journal Article
• Authors: Chen, Haidan
• Other Names: Clancey Gregory guest-editor.; Chen Haidan guest-editor.
• Is Part Of: Science, technology & society. Volume 18:Number 3(2013)
• Page Start: 321
• Page End: 338
• Publication Date: 2013-11
• Subjects: Technology -- Social aspects -- Periodicals; Science -- Social aspects -- Periodicals; 509
• DOI: 10.1177/0971721813498497
• Languages: English
• ISSNs: 0971-7218

Abstract

Population-based biobanks collect donors' biological samples and associated data, following them over time to study gene–environment interactions as causes of human diseases. International biobank collaboration is envisioned as necessary for a better understanding of causes of morbidity and mortality. However, determining how to govern international biobank collaboration remains challenging due to nations' heterogeneous ethical and legal frameworks. This article explores how China Kadoorie Biobank (CKB), a China-UK collaborative project, coped with ethical issues, such as informed consent, benefit sharing and community engagement. The CKB case study provides insights into ethical issues and governance challenges for international biobank collaboration. The transformation of biobank research from a localised endeavour to networked, internationalised projects in the context of post-genomic medical research has created a highly challenging constellation for biobank governance. The governance of global collaboration, such as between China and the UK, will depend on developing joint governance protocols based on mutual recognition and respect.