Increasing quantities and varieties of information about our health, bodies, and biology are being generated through healthcare, research, and surveillance and by biotechnologies and personal devices. This heightens the imperative to address ethical and regulatory questions about who should have access to these kinds of information and how access might impact the interests of information subjects. While bioethics and the law routinely attend to the utility of such information for health-related purposes and to potential risks of discrimination or invasions of privacy, considerably less attention is paid to the impacts of information subjects’ own encounters with this information on their identities. This chapter suggests this is a serious gap and establishes the central aim of the book – to provide a conceptually and normatively robust account of our identity interests and the ways in which these may be affected, for better or worse, by our access to our own ‘personal bioinformation’ about ourselves. It explains why ‘identity’ understood as practical self-characterisation provides the appropriate ethical focus for this inquiry. It describes what is captured by the phrase ‘personal bioinformation’, the settings in which this information may be encountered, and thus the range of circumstances to which the subsequent arguments apply.

This chapter maps the practical, conceptual, and normative gaps that this book seeks to fill. It does so, first, by exploring information subjects’ limited entitlements to access bioinformation about themselves on identity-related grounds, under existing laws and policies in the UK. It observes that while there are various provisions allowing subject access to bioinformation, those explicitly premised on identity interests are currently restricted to genetic information, particularly that concerning genetic parentage. This represents not only narrow protection of potential identity-related interests but also reflects an inadequate conception of these interests, one which risks being both unwarranted exceptionalist and promulgating a geneticised view of identity. Seeking ways to address these shortcomings, the discussion turns to assess whether existing theoretical framings of the relationship between personal bioinformation and identity might be capable of providing a satisfactory conception of identity-related interests in access. This review identifies a number of promising interpretations of this relationship, but it is argued that, taken on their own, many of these lack sufficient explanatory and normative foundations. This chapter concludes by proposing that a cluster of accounts that appeal to the concept of narrative identity offer a fruitful avenue for further investigation.