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This chapter sets out the central argument of this book – that personal bioinformation has critical roles to play in our construction of self-narratives that are capable of remaining coherent and inhabitable when confronted by our embodied and socially embedded experiences and of supporting us in making sense of and navigating these experiences. It suggests that our lives and experiences are inescapably those of embodied beings and outlines what is entailed by this claim. It proposes that any satisfactory account of narrative self-constitution must accommodate the significance of our embodiment as the context in which we construct our self-narratives and as the source of both narrative contents and limits upon unfettered self-definition. From these premises, this chapter argues that personal bioinformation – to the extent that it provides reliable and meaningful insights into our bodily and biological states, capacities, and relationships – can provide vital constitutive and interpretive tools for the interpretation and construction of our embodied self-narratives. This discussion distinguishes its position from suggestions that personal bioinformation gets us closer to narrative ‘truth’ and responds to concerns that proposing a narrative role for bioinformation commits us to the view that our identities are defined by our biology or bodies as objects.
Increasing quantities and varieties of information about our health, bodies, and biology are being generated through healthcare, research, and surveillance and by biotechnologies and personal devices. This heightens the imperative to address ethical and regulatory questions about who should have access to these kinds of information and how access might impact the interests of information subjects. While bioethics and the law routinely attend to the utility of such information for health-related purposes and to potential risks of discrimination or invasions of privacy, considerably less attention is paid to the impacts of information subjects’ own encounters with this information on their identities. This chapter suggests this is a serious gap and establishes the central aim of the book – to provide a conceptually and normatively robust account of our identity interests and the ways in which these may be affected, for better or worse, by our access to our own ‘personal bioinformation’ about ourselves. It explains why ‘identity’ understood as practical self-characterisation provides the appropriate ethical focus for this inquiry. It describes what is captured by the phrase ‘personal bioinformation’, the settings in which this information may be encountered, and thus the range of circumstances to which the subsequent arguments apply.
To understand why a narrative conception of identity offers a robust basis for understanding the nature and ethical significance of the role of personal bioinformation in self-characterisation, it is necessary first to establish what such a conception involves. This chapter reaches beyond metaphors of storytelling to review the key features of several prominent philosophical theories of narrative identity – exemplified by the approach by Marya Schechtman. According to these theories, our practical identities are constituted by our first-person accounts of who we are. Our self-narratives comprise multifaceted, diachronic characterisations of who we are as whole individuals, agents, and moral beings. We do not simply ‘have’ our identity narratives. We construct and interpret them, and they play a key role in supporting valuable experiential, evaluative aspects of a practically engaged and flourishing life. Our self-narratives are only capable of fulfilling these practical roles to the extent that they provide relatively intelligible and integrated accounts of our characteristics and experiences – in our own eyes and also in the eyes of those around us. This is, therefore, a crucially normative conception of identity, according to which the attainment of a coherent, inhabitable practical identity is an achievement, albeit a provisional and ever-evolving one.
This chapter maps the practical, conceptual, and normative gaps that this book seeks to fill. It does so, first, by exploring information subjects’ limited entitlements to access bioinformation about themselves on identity-related grounds, under existing laws and policies in the UK. It observes that while there are various provisions allowing subject access to bioinformation, those explicitly premised on identity interests are currently restricted to genetic information, particularly that concerning genetic parentage. This represents not only narrow protection of potential identity-related interests but also reflects an inadequate conception of these interests, one which risks being both unwarranted exceptionalist and promulgating a geneticised view of identity. Seeking ways to address these shortcomings, the discussion turns to assess whether existing theoretical framings of the relationship between personal bioinformation and identity might be capable of providing a satisfactory conception of identity-related interests in access. This review identifies a number of promising interpretations of this relationship, but it is argued that, taken on their own, many of these lack sufficient explanatory and normative foundations. This chapter concludes by proposing that a cluster of accounts that appeal to the concept of narrative identity offer a fruitful avenue for further investigation.
If the arguments of the preceding chapters are to be practically useful, it is necessary to move beyond claims about ‘personal bioinformation’ as a broad category, to locate how and why different bioinformation encounters may impact our identities in a variety of ways. It is also necessary to unpack further what attending to identity interests adds to the ethical and regulatory landscape. The chapter addresses each of these aims. It starts by reviewing the nature and strength of our identity-related interests – both in accessing personal bioinformation that supports the development and maintenance of inhabitable embodied self-narratives and in doing so in waysthat support this inhabitability. The discussion then explores the factors affecting when and why different information encounters engage or serve this fundamental interest. This entails examining why some kinds of bioinformation are experienced as having particular identity-significance at all and the factors shaping whether it then supports or undermines the inhabitability of our self-narratives. The chapter concludes by demonstrating that our narrative identity interests are neither coextensive nor reducible to the kinds of ethical concerns that currently dominate bioethical debates and information disclosure policies and the need to attend to identity impacts in their own right.
Building on the specification of our information-related identity interests in the preceding chapter, this penultimate chapter sets out the source and scope of other parties’ ethical responsibilities to meet these interests. These are obligations accruing chiefly to those who hold personal bioinformation about us or are in a possible to control its disclosure. This chapter argues that disclosure responsibilities are grounded in the strength of our interests in developing and maintaining inhabitable self-narratives, combined with our mutual dependence on and vulnerability to the conduct of others when it comes to fulfilling this interest. These factors ground ethical ‘responsibilities to help’ by offering, providing, or facilitating access to personal bioinformation or, sometimes, refraining from doing so. These are pro tanto responsibilities – they hold in the absence of stronger countervailing reasons to do otherwise. They will also vary depending on the nature of the information and the roles and relationship between potential discloser and recipient. These responsibilities extend not only to those to offer and disclose personal bioinformation but also to ascertain potential recipients’ identity needs and to disclose in discursive, individually responsive, and identity-supporting ways. The chapter explains what this kind of identity support entails.
This concluding chapter takes stock of the ways in which the bioinformation governance landscape would look different if it were to embrace the picture of narrative identity impacts, interests, and responsibilities characterised and defended in this book. It proposes that information subjects’ identity-related interests in whether and how they encounter information about their bodies, biology, and health should be firmly installed amongst and routinely weighed alongside the other ethical concerns – such as protecting health, privacy, confidentiality, and autonomy. This does not mean that identity interests should invariably prevail over other ethical, practical, or legal considerations but that they should be afforded weight commensurate with the centrality of an inhabitable, embodied self-narrative to a full, flourishing, and practically engaged life. Mindful of what has been said about the ways in which identity impacts vary between information types and individual circumstances and thus the need for responsive rather than rigid disclosure policies and practices, this chapter proposes priorities for reform in five contexts in which ethical and legal debates about information access are currently pressing. These contexts are donor conception, including mitochondrial donation; return of individual research findings to participants; navigating confidentiality and consent in healthcare; direct-to-consumer genomics; and personal health-tracking devices.
This chapter explores the preceding theory-based propositions, concerning the narrative roles of personal bioinformation, in light of people’s attitudes to and experiences of encountering three categories of bioinformation about themselves, as reported by empirical studies. These three categories are: information revealing conception using donor gametes, results from genetic tests indicating disease susceptibility, and findings from mental health applications of neuroimaging. These findings help illustrate the theory-based claims presented in Chapter 4 while also sense-testing and refining these claims with the benefit of insights into information subjects’ lived experiences. This chapter first outlines a sample of relevant findings, casting the net wider than those that explicitly frame subjects’ experiences in terms of identity. It then analyses these findings through the lens of embodied and relational narrative self-constitution, highlighting the range of positive and detrimental impacts that bioinformation can have on recipients’ identity narratives. These impacts include playing enabling, explanatory, practical, revisionary, and restrictive roles. The chapter concludes by identifying common and divergent themes across the three examples. This equips us better to understand diversity amongst recipients’ reactions to different information and also to extrapolate beyond specific observations relating to the three illustrative examples.
Increasing quantities of information about our health, bodies, and biological relationships are being generated by health technologies, research, and surveillance. This escalation presents challenges to us all when it comes to deciding how to manage this information and what should be disclosed to the very people it describes. This book establishes the ethical imperative to take seriously the potential impacts on our identities of encountering bioinformation about ourselves. Emily Postan argues that identity interests in accessing personal bioinformation are currently under-protected in law and often linked to problematic bio-essentialist assumptions. Drawing on a picture of identity constructed through embodied self-narratives, and examples of people's encounters with diverse kinds of information, Postan addresses these gaps. This book provides a robust account of the source, scope, and ethical significance of our identity-related interests in accessing – and not accessing – bioinformation about ourselves, and the need for disclosure practices to respond appropriately. This title is also available as Open Access on Cambridge Core.
This chapter considers the meaning and role of interdisciplinary approaches to research and teaching in medical law and ethics, itself an inherently interdisciplinary field. It notes that formidable challenges persist, however, especially when navigating methodological and conceptual differences across disciplines, and operating outwith a disciplinary ‘home’. The chapter looks at how complementary strands of diverse specialisms can come together to create the constellation of critical tools needed to address contemporary legal, regulatory and ethical challenges in medicine, health care and the biosciences. In the three case studies, the authors examine the contribution of multi- and interdisciplinary approaches to pedagogy, critical scholarship and the production of practical research outputs, and how these have informed and influenced their own work, with and alongside that of Graeme Laurie. Throughout, the discussions highlight the myriad ways that his research and teaching exemplify the openness of spirit and the intellectual curiosity required to engage meaningfully in interdisciplinarity.