Embodied Narratives: Bioinformation and Self-Creation

Jamie Webb reviews the launch of Emily Postan’s new book Embodied Narratives: Protecting Identity Interests through Ethical Governance of Bioinformation (2022).

Book cover of Emily Postan's 2022 Embodied NarrativesWhat rights should donor conceived individuals have regarding genetic information about their biological parents? What role does genetic information from consumer genetics companies like 23andMe have in our self-identity? Emily Postan’s new monograph, Embodied Narratives: Protecting Identity Interests through Ethical Governance of Bioinformation (Cambridge UP, 2022) explores the part bioinformation plays in the formation of our identities and the importance of narrative in our making of self. Postan argues that bioinformation can provide us with new interpretive tools in our own acts of self-creation, whilst rejecting a genetically determined view of personal identity. This book review emerges from a launch event hosted by the Mason Institute at the University of Edinburgh which found Postan in dialogue with John Appleby (Lancaster) and Muriel Leuenberger (Oxford).

Opening the event, Postan contextualised the book around current legal debates in the UK concerning the rights and interests of donor-conceived people and the inclusion of information about the nature of their conception. These debates, Postan suggests, tend to be oriented around two polls: first, identity-based arguments that claim a central importance of parental information for identity formation, and second, responses that view these arguments as reflecting a geneticised view of the self that is factually and normatively problematic. For Postan, these poles are not the full story. She asks: what role could bioinformation play in constructing a story about who we are, in shaping something intelligible and sustainable in our embodied lives? Postan’s proposition is that being able to construct an embodied narrative is important, and therefore, so is having the necessary tools for identity shaping available to you. Everyone involved in health technology needs to account for identity interests alongside autonomy, privacy, and so on, when considering the potential ethical impacts of bioinformation.

In response, Muriel Leuenberger praised the book as successfully interdisciplinary. Leuenberger reflected on the way in which Postan connects legal analysis, a conceptual framework in which bioinformation affects identity interests, and empirical evidence – usefully leading to concrete guidelines for changing bioinformation practices. When the bioethics literature has considered narrative theories of identity, it has generally focused on how healthcare and technology impact coherence and persistence of personal identity – for instance, when the coherence of someone’s life story might be affected by the phenomenological impact of taking SSRIs. But Postan’s book considers the impact of bioinformation on personal identity more broadly.

For Postan, bionformation plays a role in self-making, including how we plan our lives and relate to others, and some self-narratives fulfil this purpose better than others. As Leuneberger explains, four features characterise Postan’s account of positive narrative self-identity: coherence, sustainability, meaning, and comfort. Her account addresses challenges of integrating embodiment with the cognitive nature of identity. She considers how information about our biological characteristics shapes the kind of valuable identities with which we identify. Leuneberger ended with two challenges to Postan’s account. Firstly, is it always the case, as Postan argues, that we have control of how we integrate bioinformation into our own self-narratives? In a practical sense, does a father who learns his daughter is not biologically his own have any power over rejecting this information as essential? Secondly, what about individuals with restricted cognitive abilities: how should we think about the impact of bioinformation disclosures on their own sense of self-identity?

Following Leuneberger, John Appleby praised Postan’s book as one of the most detailed works he had encountered on the relationship between identity and science. Appleby suggested that this work has broad implications for how we can contextualise bioinformation across a range of different areas– including justifications of how to attribute ethical attention to identity interests in law and policy. Appleby pointed out that the literature on identity is often hit and miss. There are often confusions and conflations of metaphysical, psychological, and legal concepts of identity. Postan’s work navigates this literature well, charitably dealing with biological essentialist arguments by salvaging their useful insights over the important role of genetic information in identity formation. Additionally, the book avoids a disconnect between theory and practice. Postan provides a philosophical conceptual account that is compatible with the way people conceive of their self-identity. To that end, the book provides an excellent methodological template for combining empirical evidence and philosophical theory. Appleby was keen to see this work inform the current consultation on The Human Fertilisation and Embryology Act and to expand its theoretical remit to inform analysis of other identity-shaping technologies, including AI chatbots.

In response, Postan expanded upon the empirical work she encountered when engaging with individuals’ experiences of receiving bioinformation (particularly consumer testing from 23andMe and results from population level studies). Some sociological work has suggested that given the results only provide probabilistic information and there are no direct clinical actions to be taken as a result of this information; as such, it has limited impact on shaping identity claims. But when looking at testimonies from those involved, Postan found people telling stories about how the way in which they experienced caring for their parents, their fears for their own lives, and their children’s lives was influenced by the information they were given: changing careers, changing holiday plans, and reconceptualising their role as a child or a parent. This information is not essentialist or inevitable, but can affect different people in different ways, even in the hard cases of parental revelations.

Postan then responded to Leuneberger‘s challenge about the capacity for the very young, the very old, or cognitively disabled people, to engage in narrative self understanding. For Postan, there is space for less perfect narratives that are more fragile, especially narratives that change and shift – making normative claims difficult. But these multiple embodied narratives, Postan argues, may allow for individuals to preparae for ill health in ways that challenge assumptions within existing notions of genetic donor profiles and ‘typical’ bioinformation practices. Reflecting on Appleby’s points about the combination of philosophical and normative work within the book, Postan reflected on her aim as a philosopher, thinking critically about how to develop a theory compatible with people’s experiences. Postan expressed a desire to inform policy makers on the practical impacts of the arguments in this book, particularly by foregrounding the importance of how bioinformation is conveyed to us in narrative forms.

A lively question and answer session followed, with Postan considering questions on the value of narrative identity as a distinct moral concept, on whether more information is always a good thing in narrative shaping, regulations around data protection, and the importance of relationally in identity.

As the event closed, I found myself reflecting along a similar line to Leuneberger’s initial challenge to Postan, questioning how the clinical significance of particular bioinformation plays a role in its identity shaping effects. To be told a set of symptoms you are experiencing indicates an acute episode that will pass in time, or is emblematic of the development of a long term chronic condition, or in fact indicates a life threatening illness – I am thinking here of how certain gastric symptoms might be consistent with an acute stomach virus, or the onset of inflammatory bowel disease, or the development stomach cancer – may affect the degree to which narrative self-creation is constrained. Whilst there may be voluntariness in the degree to which you might adopt genetic bioinformation indicating your likelihood of developing a condition in the future as part of your self-identity, is there any alternative but to internalise being told you have a life-long chronic illness that demands constant management, or the information that you are facing a potentially terminal diagnosis? But as Postan pointed out in the Q&A, there can be some control over identity formation in even the most extreme circumstances: for example the hugely disparate impacts that a Huntington’s diagnosis can have depending on the individual receiving it.

There is obvious policy significance to Postan’s argument, an impressive achievement given the insufficient attention paid to the issue of identity-formation in regulatory discussions around bioinformation up to now. I share Appelby’s desire for Postan to share her researcher with policy makers, and was excited to learn that she recently submitted a formal response to the Human Fertilisation and Embryology Authority’s consultation on the modernisation of the Act. Embodied Narratives will be of great relevance to them, as well as anyone working on narrative identity in bioethics.

About the Author

Jamie Webb is a PhD student in the University of Edinburgh’s Centre for Technomoral Futures, working on the ethics of artificial intelligence in healthcare resource allocation within the field of empirical bioethics. Jamie was previously a research associate in the Division of Medical Ethics at the NYU Grossman School of Medicine. He has a BA in Philosophy and an MSci in History and Philosophy of Science from the University of Cambridge, and an MA in Bioethics from NYU, where he studied on a Fulbright scholarship.

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