Defining ourselves: narrative identity and access to personal biological information

When biological information about an individual is produced in healthcare or research settings, ethical questions may arise about whether the individual herself should be able to access it. This thesis argues that the individual’s identity-related interests warrant serious attention in framing and addressing these questions. Identity interests are largely neglected in bioethical, policy and legal debates about information access – except where information about genetic parentage is concerned. Even there, the relationship between information and identity, and the interests involved, remain unclear. This thesis seeks to fill this conceptual gap and challenge this exceptionalism. It does so by developing a normative account of the roles that a wide range of information about our health, bodies and biological relationships – ‘personal bioinformation’ – can play in the construction of our self-conceptions. This account is developed in two steps. First, building on existing philosophical theories of narrative self-constitution, this thesis proposes that personal bioinformation has a critical role to play in the construction of identity narratives that remain coherent and support us in navigating our embodied experiences. Secondly, drawing on empirical literature reporting individuals’ attitudes to receiving three categories of personal bioinformation (about donor conception, genetic disease susceptibility, and neuroimaging-based psychiatric diagnoses), the thesis seeks to illustrate, demonstrate the plausibility of, and to refine this theoretically-based proposition. From these foundations, it is argued that we can have strong identity-related interests in whether and how we are able to access bioinformation about ourselves. The practical implications of this conclusion are then explored. It is argued that identity interests are not reducible to other interests (for example, in health protection) commonly weighed in information disclosure decisions. They, therefore, warrant attention in their own right. An ethical framework is developed to guide delivery of this. This framework sets out the ethical responsibilities of those who hold bioinformation about us to respond to our identity interests in information disclosure practices and policies. The framework is informed by indications from the illustrative examples that our interests engaged as much by how bioinformation is communicated as whether it is disclosed. Moreover, these interests are not uniformly engaged by all bioinformation in all circumstances and there is potential for identity detriment as well as benefit. The ethical framework highlights the opportunities for and challenges of responding to identity interests and the scope and limits of potential disclosers’ responsibilities to do so. It also makes recommendations as to the principles and characteristics of identity-supporting disclosure practices