Genetic Privacy and Other Interests in Biobanking

Abstract

This chapter evaluates the concept of genetic privacy and its relationship with biobanking. Genetic privacy is simply a sub-concept of privacy referring to states of separation and exclusivity arising in relation to the processing of genetic data. Genetic privacy rights, then, are simply a subset of privacy rights relating to the processing of genetic data. The chapter then proceeds to map the range of genetic privacy rights engaged by the biobanking process along two axes: the transactional axis—genetic privacy rights held by research subjects; and the relational axis—genetic privacy right held by genetic relatives and genetic groups. Subsequently, it moves to map other types of interests engaged by biobanking, including interests related to the research process and third-party non-research interests in accessing biobank substances. Finally, the chapter offers a rough schematic of the relationships, including conflicts and confluences, between identified rights and interests.