Defining Ourselves: Personal Bioinformation as a Tool of Narrative Self-Conception

Abstract

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.

Narrative Devices: Neurotechnologies, Information, and Self-Constitution

“…For example, technologies such as mental wellbeing apps are ambiguously situated between the domains of healthcare and consumer entertainment 4. In parallel to the position I set out here, I have argued elsewhere that genetic may play a significant role in our identity-constituting narratives, and also that the ways that identity, and the normative aspects of the relationship between identity and genetic information, are not always well-conceived or fully articulated in existing discussionsfor example, where these appeal to, or are assumed to appeal to, a geneticised view of the identity as pre-determined by genetic traits or parentage[33,34]…”

“…And they are only briefly alluded to amongst 2016 UN Global Neuroethics Summit's guiding questions for international brain initiatives [29]. In notable contrast, the potential impacts of genetic information on our identities has attracted considerable, though not always unproblematic, ethical and regulatory attention [30][31][32][33]. 4 Ethical concerns about how others may use information about us are legitimate ones.…”

“…However, while the qualitative impacts of genetic information on identity are widely discussed, the normative significance of its role the construction of practical identity narratives remains largely unexplored, with the notable exception of some analyses of knowledge of genetic parentage [see, for example, 59, 60]. 16 I have argued elsewhere that a wide variety of personal bioinformation about different aspects of our bodily and biological attributes and relationships, generated in many different contexts could play ethically significantthough contingentroles in the construction of our self-narratives, and provided examples of the variety of ways in which they might do so (see, [33,34]). 17 Lisa Bortolotti has made similar claims in suggesting that reliable information about our own minds, such as that generated through psychological experiments, is "necessary for self-authorship" because it allows us to develop more "accurate" self-narratives that align with more closely with our actual attitudes and motivations [64, p.687].…”

Co-production and Managing Uncertainty in Health Research Regulation: A Delphi Study

“…But, as the above responses demonstrate, proportionality is more than mere risk-management. Diverse research protocols involve a wide range of considerations, for example there may be harms to participants or groups that go far beyond the physical, such as identity harms [24]: '…risks are not just physical (e.g. for forearm studies).…”

“It’s all about delivery”: researchers and health professionals’ views on the moral challenges of accessing neurobiological information in the context of psychosis

“…Is there a moral obligation to return the results of psychiatric genetic research to participants [ 17 , 18 ]? Third, it is unclear what impact having access to neurobiological information may have on the identity of mental health patients and how neurobiological information could affect their family and social relationships [ 19 ]. Will having access to one’s neurobiological information be beneficial to the development of the self-narratives of those who experience psychosis?…”