Genetic Data and the Law: A Critical Perspective on Privacy Protection

Abstract

In September 2013, The Economist warned readers that they had only two choices if they were worried about their privacy in the era of ubiquitous data collection; ‘pay up or shut up’. Anything that users share over the Internet, so the argument went, ‘will inevitably be bought and sold and, sooner or later, used against them in some way. That is the price people tacitly accept for the convenience of using popular web services free of charge’.1 Concerns such as these are not only illustrations of the changing value of privacy in our society,2 but they are also articulations of deep frustration about regulatory frameworks destined to protect citizens from undue intrusions from powerful actors failing to do so. A critical view on privacy protection legislation and regulation in a context that currently becomes more strongly anchored in healthcare, namely genetics, could thus not be timelier. In his book, Taylor critiques the notion and the role of personal data in privacy protection legislation in the UK and beyond, drawing upon his PhD research carried out in the early 2000s. The book is structured in three main parts; Part I (Chapters 1–4) provides the context for Taylor's critique, defining and critically discussing key terms and concepts, and providing an overview of the most pertinent legal and regulatory frameworks. Part II (Chapters 5–8) lays out Taylor's approach to understanding the notions of genetic data, privacy, and anonymity, as well as genetic discrimination; and a dedicated chapter (Chapter 7) addresses the relationship between human tissue and genetic data (arguing that the European Data Protection Directive must be understood to include biological material). Part III (Chapter 9) recommends revisions to regulatory frameworks.