Biobanks

Abstract

This chapter examines biobanks as a case study of multiple legal and governance challenges that cut across conventional jurisdictional lines. The advent of large-scale biobanks—collections of biomedical samples linked to personal data and other resources such as health records—has come to represent a watershed in health research regulation in many countries. As such, this chapter stresses two features of biobanks that raise questions about the role of law and regulation. First, this chapter examines the extent to which existing legal frameworks must be adapted to accommodate particular features of biobanking (and how far this is successful). Second, it highlights examples of ways in which some biobanks have developed their own governance mechanisms—in addition to legal compliance in the local country—that are aimed at promoting engaged and ethically robust biobanking practices