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
