ABSTRACT
This chapter reflects on key issues in the governance of the collection and protection of genomic data, with a focus on examples from European Union law. It discusses broadly how data privacy regimes regulate the collection and protection of genomic data. The chapter examines how these regimes balance the needs of those wanting to collect and use genomic data for various purposes with the rights and interests of those from whom genomic data are taken and to whom they relate and implicate. It uses the imperfect but relatively catch-all term 'data privacy regimes'. The chapter argues that while some data privacy regimes are seen as providing robust protection, many also tend to perpetuate or breathe life into several problematic paradigms in the genomics context. It concludes that several emerging tools and initiatives that aim to strike a better equilibrium between robust exploitation of genomic data that promotes the public interest.
