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

Defining ourselves:Personal bioinformation as a tool of narrative self-conception

Where ethical or regulatory questions arise about an individual’s interests in accessing bioinformation about herself (such as findings from screening or health research), the value of this information has traditionally been construed in terms of its clinical utility. It is increasingly argued, however, that the “personal utility” of findings should also be taken into account. This article characterizes one particular aspect of personal utility: that derived from the role of personal bioinformation in identity construction. The suggestion that some kinds of information are relevant to identity is not in itself new. However, the account outlined here seeks to advance the debate by proposing a conception of the relationship between bioinformation and identity that does not depend on essentialist assumptions and applies beyond the narrow genetic contexts in which identity is customarily invoked. The proposal is that the identity-value of personal bioinformation may be understood in terms of its instrumental role in the construction of our narrative identities, specifically that its value lies in helping us to develop self-narratives that support us in navigating our embodied existences. I argue that this narrative conception provides useful insights that are pertinent to the ethical governance of personal bioinformation. It illuminates a wider range of ethical considerations in relation to information access; it accounts for variations in the utility of different kinds of information; and it highlights that the context in which information is conveyed can be as important as whether it is disclosed at all. These arguments are illustrated using an example drawn from psychiatric neuroimaging research