Innogen · Publications · Book chapters
Privacy and the Right Not to Know: A Plea for Conceptual Clarity
The privacy concerns discussed in the 1990s in relation to the New Genetics failed to anticipate the relevant issues for individuals, families, geneticists and society. Consumers, for example, can now buy their personal genetic information and share it online. The challenges facing genetic privacy have evolved as new biotechnologies have developed, and personal privacy is increasingly challenged by the irrepressible flow of electronic data between the personal and public spheres and by surveillance for terrorism and security risks. This book considers the right to know and the right not to know about your own and others’ genomes. It discusses new privacy concerns and developments in ethical thinking, with the greater emphasis on solidarity and equity. The multidisciplinary approach covers current topics such as biobanks and forensic databases, DIY testing, group rights and accountability, the food we eat and the role of the press and the new digital media.
The contribution of this chapter is two-fold. First, it argues for conceptual clarity in the debates about the right to know and the right not to know by suggesting that the most appropriate framing mechanism to conduct such discussions – and ultimately to give effect to any such rights – is through an understanding of the symbiotic relationship between notions of personal autonomy and privacy. Importantly, the claim is made that the right to know and the right not to know should not be seen simply as two sides of the same conceptual coin. Different interests are at stake with each putative ‘right’, and, albeit overlapping, we cannot give proper effect to either right without this deeper understanding.
The second contribution of this chapter is to ask whether and how legal effect might be given to the most contentious of the two claims, that is, the right not to know. It is argued that current legal paradigms, nationally and internationally, fail to recognise the conceptual distinctiveness of this kind of right-claim and, accordingly, there is little chance of effective legal remedy for unwarranted disclosure of personal information to a person about themselves. This, however, should not be lamented given the subtle considerations and judgments that are in play. Discretion and not duty should be the watchword when it comes to recognising any so-called ‘right’ not to know.