Embodied Narratives: Protecting Identity Interests through Ethical Governance of Bioinformation

by Emily Postan

Overview

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.

Product Details

ISBN-13:	9781108718196
Publisher:	Cambridge University Press
Publication date:	11/16/2023
Series:	Cambridge Bioethics and Law
Pages:	316
Product dimensions:	5.94(w) x 9.02(h) x 0.71(d)

About the Author

Emily Postan is a chancellor's fellow in Bioethics at the University of Edinburgh Law School and a deputy director of the J Kenyon Mason Institute for Medicine Life Sciences and the Law. Her principal research interests lie in the ethical and regulatory implications of the impacts of health technologies and health data on our identities, group memberships, and relationships with others. Her wider research includes work in neuroethics, reproductive ethics, and regulation of health research.

Table of Contents

1. Attending to identity; 2. Mapping the landscape; 3. Narrative self-constitution; 4. Bioinformation in embodied identity narratives; 5. Encounters with bioinformation: three examples; 6. Locating identity interests; 7. Responsibilities for disclosure; 8. Protecting identity in practice.

Editorial Reviews

‘… this book has something to offer everyone who is interested in narrative identity, the ethics of accessing personal bioinformation, or both.' David DeGrazia, Bioethics

‘Embodied Narratives is thorough, written engagingly, and an example of interdisciplinarity at its best. It makes a strong case for taking identity interests into account in the governance of bioinformation and provides clear instructions for how we can do justice to identity interests in the context of personal bioinformation … This makes it not just relevant for people collecting and governing bioinformation but for ethicists who examine technologies and practices that may impact our identity interests (for instance, neurointerventions or digital profiling) as well as researchers concerned with philosophy of identity … [The book is] an exciting and original contribution to the literature. Surely - and hopefully - it will impact future debates, policies, and legislation on access to information about our bodies, health, and biological relationships.’ Muriel Leuenberger, Bioethical Inquiry

From the Publisher