— 37¢"/~“ |1iiiiiii|||'|'|’|||fi “'3/*2‘-4 iéa-i 3 90'/6 00286 2a51 ——-——— AT THE CENTER, ON THE MARGINS Editedby IackieLeachScully,Ph.D. LaurelE.Baldwin-Ragaven,M.D.C.M. PetyaFitzpatrick,M.A. G0 gle | _-__-§-_-—_|_-h.%_r-L|—'-_l-—" : -— - -.|- F -I-' .--“ -".-' “J.-“' F" .I'.--'1".--‘I.--"I."--"'.T-" -_-F-"'--‘I--""'.-r"" Feminist Bioethics :11)" Q] "|-:1" ’r""~::v'"|" G‘3‘*~ 813 UNIVERSITY OF f'--'1|CH|GAN @ IDID The Iohns Hopkins University Press All rights reserved. Published aoio Printed in the United States ofAmerica on acid-free paper 1 4 6 3 9 r s s I The Johns Hopkins University Press 13:15 North Charles Street Baltimore, Maryland 11113-4353 vnv1v.press.jhu.edu Library of Congress Cataloging-in-Publication Data Feminist bioethics : at the center. on the margins I edited by Iackie Leach Scully, Laurel E. Baldwin-Ragaven. and Petya Fitzpatrick p.; cm. Includes bibliographical references and index. ISBN-13: gvfl-o-Boifl-9414-4 (hardcover: allc paper) ISBN-io: o-Bots-9414-7 {hardcover : alk. paper] ISBN-13: gyfi-o-Boifl-9415-1 (pbk. : alk. paper] ISBN-1o: U-El-D13-9415-5 {pblc : alk. paper} 1. Medical ethics. 2. Bioethics. 3. Feminist ethics. I. Scully, Iackie Leach. II. Baldwin-Ragaven, Laurel. III. Fitzpatrick. Petya. 191:5- [Dt~iLivi: 1. Bioethics. 1. Feminism. 3. Bioethical Issues. WE do F319 ao1o] R;ta4.F39ti aoio 1;-'4'.5_t5;-'—dc1a 2oo9o:t44tiH A catalog record for this book is available from the British Library. Special discounts are nveiialiiefor bulkpurchases ofthis book. For more information. piense contact Special Soles nt 41o~5n'i-ti_o-36 or [email protected]|u.edu. The Iohns Hopkins University Press uses environmentally Friendly book materials, including recycled test paper that is composed ofat least 3o percent post-consumer waste. whenever possible. All ofour book papers are acid-free, and our jackets and covers are printed on paper with recycled content. C.0 8le _ _ _ _ __ ='—-'7—__,_-'3' "_'__j"-1"’ "':-' __-__.-_.- —-_.- -,_- -_;|-_,_-_=.-1...-.-—':r --1-".-r.-"..-"' CDHTEHTS List ofContributors vii Preface xi Acknowledgments xvii PART I IHTREZIDUCTIDH TD PEMIHIET BIUETHIC5 1 Petra. r=|'raiurrn.tctc ano racers Lesion scu|.1.v 1 The Expanding Landscape: Recent Directions in Feminist Bioethics 11 iii. H H E DU H‘CH I 1"-I 1 “It Is Her Problem. Not Ours": Contributions ofFeminist Bioethics to the Mainstream 13 l CHIILISTDPH HEHHAHH-SUTTEII. 3 Broadening the Feminism in Feminist Bioethics 45 RICHARD TWINE PART II THEORY IN FEMIHIST EIDETHIC5 I51 PETTA FITIPATRIEH AND IACEIE LEACH ECULLY 4 Conceptions ofAutonomy and Conceptions of the Body in Bioethics 71 CJLTEIDHA MACKENZIE 5 Trust, Method, and Moral Progress in Feminist Bioethics 91 IEESICA FRATA MILLER ti The Right to Life: Rethinking Universalisrn in Bioethics toy HART C. HAWLIHSDH PART III. FRDM THEDRT TD METHDD 131 IACIEIE LEACH SIEULLT 7' Bodies. Connectedness. and Knowledge: A Contextnai Approach to Hereriitarjr Cancer Genetics 139 LDIILI DIAGIHCDUIIT-CAHHIHG ii Stories of Innocence and Experience: Bociiiy Narrative and Rape 157' FIDHA UTLE-'1' C-0 gle vi Contents 9 W'here’s the Harm? Challenging Bioethical Support ofPrenatal Selection for Sexual Orientation 1?4 IANICE IHICLAUGHLI N 1o Toward a Methodology for Technocratic Transformation: Feminist Bioethics, Midwifery. and Womenh Health in the Twenty-first Century 19o AL-YA5-HA ILHAAH AND INA HAY GAEIIIN PART IV UNDERSTANDING DIFFERENCE1 MAKING AND BREAKING CDNNECTIDN5 WITHIN AND BETWEEN THE MARGINS 10? LAUREL E. BALDWIN-RAGAVEN AND IACIEIE LEACH SCULLY 11 The Difference Difierence Makes: Public Health and the Complescities ofRacial and Ethnic Diflinences 111 RUTH GRDENHDUT 11 Feminist Bioethics and Indigenous Research Reform in Australia: is an Alliance across Genden Racial, and Cultural Borders a Useful Strategyfor Promoting Change? 243 IENNIFER BAKER; TERRY DUNEAR. AND MARGARET ECRIHGEDUR 13 Chinals Birth Control Program through Feminist Lenses 15? IING-HAD NIE 14 A Feminist Stanclpoint on Disability: Our Bodies, Ourselves 173 HART B. MAHDWALD Conclusion. Reassessment and Renewal 291 IAIEIIIIE LEACH EEULLT Index 3o1 C-0 gle '.!'-I""I'-"'_"."'_""'J;-TL’ I...-- _.- -:- —-.--' =1-' .r.--.---1--'1-=-‘--1" . -="'-""»-""--"' CCINTRIEUTUR5 lennieen Batten, Ph.D., is an Indigenous senior lecturer in the Unaipon School, Indigenous College ofEducation and Research at the University ofSouth Australia, and a regular contributor to Indigenous and women’s health formns in South Australia. Postcolonial settings and the impacts on health and well-being for Indigenous women and men are an ongoing area ofinterest for her. LAUREL E. Batnwin-Raoavsn, Ivl.D.C.M., is a physician, educator, and ac- tivist. The former Henry R. Luce Professor of Health and Hmnan Rights at Trinity College in Hartford, Connecticut, she now teaches and sees patients at the Asylum Hill Family Practice Residency Training Program afliliated with the University of Connecticut and is a visiting professor at the University of Cape Town. Faculty of Health Sciences School of Public Health and Farnily Medicine in South Africa. Loat olaoincooar-Canntno, Ph.D., is a11 ethicist a.11d codirector of the Clinical Ethics Service, Childrenls and Women’s Health Centre of British Colmnbia, ‘ilaiicouver, Canada. She has a joint appointment as clinical assistant professor in the Department of Pediatrics, Faculty of Medicine, University of British Columbia, and adjunct professor in the UBC School of Ntusing. Her cturent research focuses on feminist ethics, social justice, and access to health care. Anna Doncntn, Ph.D., is Emerita Professor of Philosophy and Women’s Studies at Indiana University, Indianapolis, a11 afliliated research scholar at Mt. Sinai School of Medicine (New York City), and a founding “mother” of the hiternational Network on Feminist Approaches to Bioethics (FAB). She is an associate editor of the journal Bioethics and a member of the editorial board of the International Journal ofFeminist Approaches to Bioethics. She is coeditor of two volumes based on FAB conference papers a.nd author of nu- merous essays on feminism and bioethics. Teaav Dunnaa, B.B.B.S., lvI.P.E.BzT., is an Indigenous senior research fellow C-0 gle viii Contributors and Ph.D. candidate in the Faculty of Education, Health and Science at the Charles Darwin University, Northern Territory, Australia, and a member of the National Health and Medical Research Council of Australia, Australian Health Ethics Committee. Her current research interests include: investiga- tion of the historical aspects to legislation; development of social policy for Aboriginal and Torres Strait Islander peoples in the Northern Territory and assessment of the context and impact through ethical lenses; exploration of ways to best translate improved understanding ofresearch and research ethics with Indigenous communities; consideration of how to produce useful re- sources for human research ethics committees; a11d examination of ways to articulate Indigenist methodologies. P ET rs. F IT zaar arc x, lvI.A., is a health researcher interested in the lived expe- rience of illness and disability, womenls health, and morality in health and illness. Previously located at the Menzies Centre at the University of Tasma- nia, Hobart, Australia, she is now studying toward her doctorate at Australian National University, Australian Capital Territory, Australia. Ina M av Gas x 1 N , M.A., C.P.IvI., is fomider and director ofthe Farm Midwifery Center, located near Siunmertown, Tennessee. Author of Spiritual Midwifery (1975, revised zooz) and Ina Mayb Guide to Childbirth (zofi3). she promotes ecstatic birth, maintenance of breech delivery skills, and recognition of certain ingenious skills and techniques used by indigenous midwives of Mexico a11d Brazil. She initiated and coordinates the Safe Motherhood Quilt Project. RuT H Gno s.N 1-1 o u T, Ph.D., is professor ofphilosophy at Calvin College. Grand Rapids, Michigan. Her book Connected Lives (zoo4) traces the account of human nature found in an ethics of care. Other recent publications include Philosophy: Feminism, and Faith (zoos), coedited with Marya Bower, as well as essays on liberal feminism, bioethics and care theory, a11d nurselclient rela- tionships. AL-Yas HA ILHAAM, Ph.D., is a womenls health activist specializing in eco- feminist theory, HIV!AIDS advocacy, and reproductive justice. She is an as- sociate professor of philosophy in the Department of Philosophy and Reli- gious Studies at Spelman College in Atlanta, Georgia, and she was a Fulbright Scholar at the University of Buea in Cameroon, Central Africa, in zoo-3-o9. Car at ona M ac x enzi s. received her Ph.D. from the Australian National Uni- versity and is currently professor of philosophy at Macquarie University, Syd- ney, Australia. Her main areas of research are moral psychology, applied eth- ics, and feminist philosophy. She is coeditor ofRelational Autonomy: Feminist Perspectives on Autonomy, Agency and the Social Self (zooo] and of Practical C-0 gle I’ - _-T. I. _.- _.— -—-—' -fl- :3‘ _ --I-1-Ii-_|.|-I-_-.1-I-_ Contributors ix Identity and Narrative Agency (zoos). In zooy, she was awarded the Australian Museiun Eureka Prize for Research in Ethics. Ma as B. Manowatn, Ph.D. (philosophy), is a professor at the University of Chicago (Illinois) i11 the MacLean Center for Clinical Medical Ethics and the Department of Obstetrics and Gynecology. Her books in feminist philosophy and bioethics include Philosophy ofWoman: Classical to Current Concepts (3rd ed., 1994); Women and Children in Health Care: An Unequal Majority (1993, reprinted 1996); Genes, Women, Equality (zooo), and Bioethics and Women: Across the Life Span (zooti). Iantca MCLAUGHLIH, Ph.D., is the executive director of the Policy, Ethics and Life Sciences Research Centre in the School of Geography, Politics and Sociology at Newcastle University, Newcastle upon Tyne, United Kingdom. Her current empirical research focuses on disability in childhood, drawing on a range of theoretical perspectives, including feminist theory and disability studies. Jessica P RATA M1 LLE n, Ph.D., is an associate professor of philosophy at the University of Maine and clinical ethicist at Eastern Mai11e Medical Center, a four-hundred-bed tertiary-care facility in Bangor, Maine. Ittvo - Bao N1 E, Ph.D., is an associate professor at the Bioethics Centre, Univer- sity of Cltago, New Zealand, and honorary adjmictlvisiting professor in sev- eral Chinese universities. He is the author ofBehind the Silence: Chinese Voices on Abortion (zoo5), Medical Ethics in China: A Cross-cultural Interpretation (forthcoming), and more than seventy journal articles and book chapters on bioethics a11d the history ofmedicine. He is finishing a coedited volume and a book monograph on Japanese wartime medical atrocities. Another major project ofhis current research is the ideology a.11d ethics of Chinah birth con- trol program. Maav C. Raw]. INSCIN, Ph.D., is a professor ofphilosophy at Stony Brook Uni- versity, New York, and the coeditor of Thinking with Irigaray (forthcoming), The Voice ofBreast Cancer in Medicine and Bioethics (zooo), and Derrida and Feminism (1997). She has been the editor of five issues of the lournal o_fMedi- cine and Philosophy, including Foucault and the Philosophy ofMedicine, The Future ofPsychiatry, and Feminist Bioethics. Her publications include articles on Hegel, Proust, literature a11d ethics, bioethics, and contemporary French philosophy. She is the editor of the International fournal of Feminist Ap- proaches to Bioethics as well as the codirector of the Irigaray Circle. Cn111s'ro1=-1-1 Renscann-Sorrea, Ph.D., is a philosopher with initial training in molecular biology. He is currently a professor of theory and ethics of the C-0 gle I C.'or|tributors life sciences at the University of Liibeck, Germany. Since aoofl, he has been a visiting professor at BIOS, London School of Economics and Political Science, and from aoot to aoog he was chair ofthe Swiss National Advisory Commis- sion on Biomedical Ethics. His research interests include philosophy and eth- ics of genetics and stem cell research, end-of-life care, governance issues, and methodology of bioethics from a hermeneutic perspective. Msnoauer Scatssoeottu, Ed.D., is a lecturer in the School of Education at the University of South Australia. She has a background in Indigenous educa- tion and Indigenous research methodology and ethics, Identifying barriers to the implementation of changed approaches to engagement with Indigenous peoples over research issues and transferring these findings into practice is her main research interest. Recent projects include qualitative data collection and analysis relating to Aboriginal and Torres Straits Islander health-sector accreditation, and improving housing responses to Indigenous patterns of mobility. lac: It I e LEACH S ct.rLI.v, Ph.D., is a reader in social and bioethics in the School of Geography, Politics and Sociology, and director of research at the Policy, Ethics and Life Sciences Research Centre, Newcastle University, Newcastle upon Tyne, United Kingdom. Her current research interests include genetic and reproductive technologies, disability, assistive technologies, and the for- mation of moral opinion. Rtct-mun TWINE, Ph.D., is a senior research associate at the Economic and Social Research Council (ESRC-UK) Center for Economic and Social Aspects of Genomics (Cesagen), Lancaster University, United Kingdom. His writings span diverse areas, including critical bioethics, ecofeminism, posthmnanism, and the social, economic, and ethical questioning of hmnanianisnal relations in the context ofbiotechnologies. F1 ona UTLev received her Ph.D. from the University of New England, Austra- lia, and is currently an honorary associate with the School ofArts at UNE. She previously worked in the field ofwomen"s health with a family-plamting NGO for 1o years a.nd taught communications for women’s advocacy groups and vocational courses for 15 years. C-0 316 - — ;"'-'-'._---I--_ _F_—-|_|—._1--I-_—- _.-.I|--" _.-— -:- —--F .--' .r..---.1-l.--:--—T-P __-T-"'-"".--"'_,,-"'“ PREFACE In the early twenty-first century, we as feminist bioethicists experience a mixture of pride in how far we have come, concern about what we have not yet achieved, and fear about what we might be turning into. The aim ofthis volume is to bring together writers who in different ways reflect on the positioning offeminist bio- ethics. Some directly address the history offeminist bioethics, its epistemological and methodological foundations, and the tools it has developed for bioethical work. Others use these tools to contribute to the exploration ofold and new bio- ethical questions. Yet others explicitly reflect on feminist bioethics“ current rela- tionship to the mainstream(s} of bioethical work and the intersection between feminism and other marginalities that are of growing importance in bioethics, conceptually and practically. In part I, three authors examine the development of feminist bioethics and consider its contributions to mainstream bioethical debate. Anne Donchin“s chapter provides a background context for this collection: she reviews the origins of feminist bioethics with a particular focus on the achievements of the Interna- tional Network on Feminist Approaches to Bioethics (FAB). She outlines “where we [may be] going,“ identifying some of the directions in which feminist bio- ethical enquiry is headed in the twenty-first century. Next Christoph Relunann-Sutter provides a commentary on “where we have been“ indicating how “the mainstream“ has benefited from contributions from feminist bioethics. Using prenatal diagnosis as a case study, he performs content analysis on three successive entries in a standard work to trace how mainstream thinking on this issue has changed over the past 25 years. From his position as a sympathetic observer, he suggests that feminist bioethics could profit from re- conceptualizing what is understood by “mainstream bioethics.“ Richard Twinels chapter challenges the reader to “reflect on the types of femi- nisrn“ that shape bioethics. He argues we should strengthen our relationship with C-0 316