THE BODY Margrit Shildrick and Roxanne Mykitiuk ETHICS OF edited by bioethics Ethics of the Body Postconventional Challenges edited by Margrit Shildrick and Roxanne Mykitiuk The provocative contention of the postmodernist and feminist essays in Ethics of the Body is that conventional bioethics is out of touch, despite its growing profile. It is out of touch with an ongoing phenomenological sense of bodies themselves; with the impact of postmodernist theory as it prob- lematizes the certainties of binary thinking; and with a postmodern culture in which bioscientific developments force us to question what is meant by the notion of the human self. The authors demon- strate that the conventional normative framework of bioethics is called into question by issues as wide ranging as genetic manipulation, disability, high-tech prosthetics, and intersexuality. The essays show how both the theory and practice of bioethics can benefit from postmodernism’s characteristic fluid- ity and multiplicity, as well as from the insights of a reconceived feminist bioethics. They address issues in philosophy, law, bioscientific research, psychiatry, cultural studies, and feminism from a “postconventional” perspective that looks beyond the familiar ideas of the body, proposing not a bioethics about the body but a radical ethics of the body. After exploring notions of difference in both feminist and postmodernist terms, the book con- siders specific issues—including HIV, addiction, borderline personality disorder, and cancer—that chal- lenge the principles of conventional bioethics. The focus then turns to questions raised by biotech- nology: one essay rethinks the traditional feminist ethics of care in the context of new reproductive technology, while others tackle genetic and genomic issues. Finally, the book looks at embodiment and some specifically anomalous forms of being-in-the-body, including a consideration of intersex infants and children that draws on feminist, poststructuralist, and queer theory. Margrit Shildrick is Senior Research Visiting Fellow at WERRC, University College Dublin. Roxanne Mykitiuk is Associate Professor of Law at Osgoode Hall Law School at York University, Toronto. Basic Bioethics series “Rather than merely applying established concepts of ethics to biomedical problems, Ethics of the Body puts the field of ethics itself in question. These essays demonstrate how the challenges and crises posed by advances in biomedicine require nothing less than new concepts of moral agency and responsibility beyond the conventional models of consequentialism, deontology, and virtue. Drawing on diverse resources—phenomenology, Derrida’s thought of différance, Foucault’s critique of power, and Irigaray’s radical feminism—the contributors inaugurate a critical reconfiguring of the eth- ical subject, while at the same time they offer concrete and original approaches to particular moral problems in medicine and biotechnology. Anyone working in ethics or bioethics needs to confront the conceptual and practical challenges posed by this volume.” —Mary C. Rawlinson, Department of Philosophy, Stony Brook University “A remarkable group of essays that use postmodern thought to deconstruct conventional bioethics, biomedicine, and biotechnology. Shildrick and Mykitiuk succeed in convincing readers that for all its difficulties, postmodern thought is probably best suited to confront humanity’s growing awareness of human difference. This book will be a significant contribution to bioethics.” —Rosemarie Tong, Department of Philosophy and Center for Professional and Applied Ethics, University of North Carolina at Charlotte “This is an exciting and challenging collection of essays. They ought to convince even the most skep- tical bioethicist that postmodernist bioethics can produce radical illuminations and reflective theoriz- ing regarding the diversity and fluidity of human embodiment that marks the twenty-first century. The lucid introduction and the compelling range of essays offer critical and substantive insights into the bioethical dilemmas and choices we face as embodied individuals, as human community, and as a species whose future is uncertain.” —Kathryn Pauly Morgan, Professor of Philosophy, Women’s Studies, and Bioethics, University of Toronto Cover art: Louise Bourgeois, Arch of Hysteria, 2000. Hanging Piece: Pink Fabric, 5 1/2 x 17 1/2 x 11 inches; 13.9 x 44.4 x 27.9 cm. Courtesy Galerie Karsten Greve, St. Moritz. Photo: Christopher Burke The MIT Press Massachusetts Institute of Technology Cambridge, Massachusetts 02142 http://mitpress.mit.edu ETHICS OF THE BODY Shildrick and Mykitiuk, editors ,!7IA2G2-gjdcac!:t;K;k;K;k 0-262-69320-8 Postconventional Challenges Ethics of the Body 04447_Prelims.qxd 3/24/05 12:50 AM Page i Basic Bioethics Glenn McGee and Arthur Caplan, editors Pricing Life: Why It’s Time for Health Care Rationing, Peter A. Ubel Bioethics: Ancient Themes in Contemporary Issues, edited by Mark G. Kuczewski and Ronald Polansky The Human Embryonic Stem Cell Debate: Science, Ethics, and Public Policy, edited by Suzanne Holland, Karen Lebacqz, and Laurie Zoloth Engendering International Health: The Challenge of Equity, edited by Gita Sen, Asha George, and Piroska Östlin Self-Trust and Reproductive Autonomy, Carolyn McLeod What Genes Can’t Do, Lenny Moss In the Wake of Terror: Medicine and Morality in a Time of Crisis, edited by Jonathan D. Moreno Pragmatic Bioethics, 2d edition, edited by Glenn McGee Case Studies in Biomedical Research Ethics, Timothy F. Murphy Genetics and Life Insurance: Medical Underwriting and Social Policy, edited by Mark A. Rothstein Ethics and the Metaphysics of Medicine: Reflections on Health and Beneficence, Kenneth A. Richman DNA and the Criminal Justice System: The Technology of Justice, edited by David Lazer Is Human Nature Obsolete? Genetics, Bioengineering, and the Future of the Human Condition, edited by Harold W. Baillie and Timothy K. Casey End of Life Decision-Making: A Cross-National Study, edited by Robert H. Blank and Janna C. Merrick Deciding for the Profoundly Mentally Disabled, by Norman L. Cantor Ethics of the Body: Postconventional Challenges, edited by Margrit Shildrick and Roxanne Mykitiuk 04447_Prelims.qxd 3/24/05 12:50 AM Page ii Ethics of the Body Postconventional Challenges edited by Margrit Shildrick and Roxanne Mykitiuk The MIT Press Cambridge, Massachusetts London, England 04447_Prelims.qxd 3/24/05 12:50 AM Page iii ©2005 Massachusetts Institute of Technology All Rights Reserved. No part of this book may be reproduced in any form by any electronic or mechanical means (including photocopying, recording, or information storage and retrieval) without permission in writing from the pub- lisher. MIT Press books may be purchased at special quantity discounts for business or sales promotional use. For information, please email special_sales@mitpress.mit.edu or write to Special Sales Department, The MIT Press, 5 Cambridge Center, Cambridge, MA 02142. This book was set in Sabon by Achorn Graphic Services, Inc. Printed on recycled paper and bound in the United States of America. Library of Congress Cataloging-in-Publication Data Ethics of the body: postconventional challenges / edited by Margrit Shildrick and Roxanne Mykitiuk. p. cm.—(Basic bioethics) Includes bibliographical references and index. ISBN 0-262-19523-2 (alk. paper)—ISBN 0-262-69320-8 (pbk. : alk. paper) 1. Bioethics. I. Shildrick, Margrit. II. Mykitiuk, Roxanne, 1962– III. Series. QH332.E736 2005 174′.957—dc22 2004061361 10987654321 04447_Prelims.qxd 3/24/05 12:50 AM Page iv Contents Series Foreword vii Acknowledgments ix I Introduction 1 Beyond the Body of Bioethics: Challenging the Conventions 1 Margrit Shildrick II Critical Differences 2 Attending to Difference: Phenomenology and Bioethics 29 Philipa Rothfield 3 Admitting All Variations? Postmodernism and Genetic Normality 49 Jackie Leach Scully III Thinking Through Crisis 4 The Measure of HIV as a Matter of Bioethics 71 Marsha Rosengarten 5 Addiction and the Bioethics of Difference 91 Helen Keane 6 Liberatory Psychiatry and an Ethics of the In-Between 113 Nancy Potter 7 A Bioethics of Failure: Antiheroic Cancer Narratives 135 Lisa Diedrich IV The Challenge of Biotechnology 8 Biomedicine and Moral Agency in a Complex World 155 Sylvia Nagl 04447_Prelims.qxd 3/24/05 12:50 AM Page v 9 Reproductive Technology and the Political Limits of Care 175 Carol Bacchi and Chris Beasley 10 Genetics and the Legal Conception of Self 195 Isabel Karpin 11 The Devouring: Genetics, Abjection, and the Limits of Law 217 Karen O’Connell V Rethinking the Materiality of Embodiment 12 A “Genethics” That Makes Sense: Take Two 237 Rosalyn Diprose 13 Queer Kids: Toward Ethical Clinical Interactions with Intersex People 259 Katrina Roen Contributors 279 Index 281 vi Contents 04447_Prelims.qxd 3/24/05 12:50 AM Page vi Series Foreword We are pleased to present the sixteenth book in the series Basic Bioethics. The series presents innovative works in bioethics to a broad audience and introduces seminal scholarly manuscripts, state-of-the-art reference works, and textbooks. Such broad areas as the philosophy of medicine, advanc- ing genetics and biotechnology, end-of-life care, health and social policy, and the empirical study of biomedical life are examined. Glenn McGee Arthur Caplan Basic Bioethics Series Editorial Board Tod S. Chambers Susan Dorr Goold Mark Kuczewski Herman Saatkamp 04447_Prelims.qxd 3/24/05 12:50 AM Page vii 04447_Prelims.qxd 3/24/05 12:50 AM Page viii Acknowledgments As with any intellectual enterprise, many friends and colleagues have contributed both knowingly and unknowingly to the generation and com- pletion of this collection. Some have been encouraging, others skeptical, but all have had an influence. The initial idea came about as the result of a kind invitation from Anne Donchin independently to both editors to take part in a panel for the third International Conference of Feminist Approaches to Bioethics (FAB) held in London in 2000. Although Anne and other members of the executive committee of FAB had hoped we would edit a collection of papers drawn from that conference, we decided instead on a different approach that more clearly reflected our own postmodernist interests. Nonetheless, we sincerely hope that they will find this book both surprising and stimulating. Our main thanks, then, to the present contributors—of whom just two presented papers in London—for their enthusiasm, support, and patience throughout a some- what lengthy process. Margrit: my personal thanks to Roxanne for making this long-distance collaboration such a pleasurable and care-free experience and to my long- term collaborator Janet Price, whose sharing and discussion of ideas over many years remains invaluable. Roxanne: Misha Mykitiuk has been a patient and understanding child during the completion of this project. I am also grateful to Margrit for her good-humored patience and perseverance. 04447_Prelims.qxd 3/24/05 12:50 AM Page ix [...]... The clarity of self and other is blurred in the acknowledgment of a mutual fluidity It speaks to a circuit of embodied exchanges Irigaray, like Merleau-Ponty, stresses the significance of a reversible and ambiguous touch—without reducing the difference(s) of the other to the standards of the selfsame.1 For Irigaray, the threshold of ethics lies in the materiality and tangibility of the self–other relation:... Although there is always a place for exploration of the theoretical frameworks the metaethics—that support or preclude the relevance of any one model of behavior, the real test of bioethics is whether it is able to operate adequately in practice In other words, the question is one of the extent to which it answers the different needs and desires of individual agents faced with a complexity of possible... continuity of the unified sovereign self the archetypal moral agent—runs the risk of being seen as unable to address, still less influence, the ethical dimensions of the impact of the biosciences on all our lives Rather than mount a detailed rebuttal of such a view, we offer here a series of essays, more or less committed to the guiding paradigms of postmodernism, that belie the central charge The issue... outlines what she calls an ethics of the in-between In contrast to Potter’s suspicion of narrative as therapy, Lisa Diedrich reclaims narrative— through the medium of two personal accounts of cancer—to suggest that it can be both postmodernist in tenor and explicate how the failure of the body and the failure of language can nonetheless ground an ethics The challenges and conundrums of recent biotechnologies... opens the final part of this volume Again the disruptive power of genetics makes its appearance as the site that mobilizes a radical reconsideration of bioethics itself In a piece that brings together many of the concerns of the collection, Diprose sets out a phenomenological approach to issues of biomedical knowledge, of limits and boundaries, and the construction of putative identities in the face of. .. might be applied to a bioethics Beyond the Body of Bioethics 21 of difference Where Rothfield focuses on the everyday problematics of the medical encounter, Jackie Leach Scully addresses issues given acute topicality by genetic research and the sequencing of the human genome Her essay takes up the complexity of differences, and their relationship to the normative, in the context of genetic variation, specifically... experience and interface with the world of others The focus of enquiry, then, cannot be a matter of abstraction as though the materiality of the body had nothing to do with the makeup of the ethical, ontological self, but rather should be a matter of how any self is always irreducibly embodied In other words, the concern is as much a matter of ontology as of ethics, where those two terms are intertwined... part IV, where some of the most exemplary issues of postmodernity the problematization of the parameters of both the “normal” body and the human self—are examined Given their longstanding concern with the area of reproduction—where many advanced biotechnologies first evolved—feminist bioethicists have been in the forefront of addressing the new problematic Where these essays carry the argument forward... regulatory controls, not least of which is the practice of biomedicine itself The extent of the control required to prop up such normative Beyond the Body of Bioethics 7 categories is readily apparent in at least two issues addressed in subsequent chapters: the treatment of intersexuality and the potential genetic limitation of disability Against the inherent failure of the modernist model in which each... the way to a new and arguably more encompassing way of understanding ethics Far from abandoning the search for the ethical, Derrida takes up the notion of the undecidable as precisely the mark of a highly responsive and responsible ethics His argument is that in the face of complex and incommensurable demands that suggest at best a multiplicity of competing ways forward, the imposition of one set of . beyond the familiar ideas of the body, proposing not a bioethics about the body but a radical ethics of the body. After exploring notions of difference in both feminist and postmodernist terms, the. bodies themselves, in the phenomenological sense in which the being, or rather the becoming, of the self is always intricately inter- woven with the fabric of the body; it is out of touch with the. Toronto. Basic Bioethics series “Rather than merely applying established concepts of ethics to biomedical problems, Ethics of the Body puts the field of ethics itself in question. These essays demonstrate