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MAKING SENSE OF INTERSEX
MAKING SENSE OF INTERSEX
Changing Ethical Perspectives in Biomedicine

Ellen K. Feder
Indiana University Press
Bloomington and Indianapolis
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2014 by Ellen K. Feder
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This is for Zoey and for Enza (as Nic said)
All knowledge and every intention desire some good . . . Most people are almost agreed as to its name; for both ordinary and cultivated people call it happiness.
-Aristotle, Nicomachean Ethics
Contents

Acknowledgments

Introduction. Disciplinary Limits: Philosophy, Bioethics, and the Medical Management of Atypical Sex
1 The Trouble with Intersex: History Lessons
2 In Their Best Interests : Parents Experience of Atypical Sex Anatomy in Children
3 Tilting the Ethical Lens: Shame, Disgust, and the Body in Question
4 Reassigning Ambiguity: Parental Decisions and the Matter of Harm
5 A Question of Ethics as/or a Question of Culture: The Problem of What Is and What Ought to Be
6 Neutralizing Morality: Nondirective Counseling of Parents of Children with Intersex Conditions, 2006-
7 Practicing Virtue: A Parental Duty
8 Protecting Vulnerability: An Imperative of Care

Conclusion. Lessons from Physicians

Notes

References

Index
Acknowledgments
Among the Virtues that Aristotle discusses in the Nicomachean Ethics is generosity. Its practice is essential for the promotion of happiness-or human flourishing-that Aristotle took to be the purpose of a good life. I am grateful to so many whose sustained, and sustaining, generosity made this project possible.
Most of the central chapters have their origins in invitations that took my thinking to unexpected places. My thanks first to Eva Kittay, whose insistence that I keep my promises resulted in the research that became chapter 2 . This chapter no doubt would have been the last I wrote on the ethical questions raised by the standard of care were it not for Erik Parens s invitation to participate in the Hastings Center project on Surgically Shaping Children (2002-2004). In retrospect, I see that participation in this two-year project marked the beginning of this book; I have continued to rely on the insight of those involved in the project and am glad to have had the opportunity to work with and among the committed group Erik assembled.
I would also not know until sometime later how influential Lewis Gordon s 2006 invitation to present in Philadelphia at Heretical Nietzsche Studies would become in my thinking about the place of shame and disgust in the standard of care. His admonition to reconsider my criticism of normalization also shaped my thinking about the new nomenclature. Subsequent presentations of the work that became chapter 3 benefited from the criticism of those attending the Workshop on Sexual Difference and Embodiment at McGill University later that year, as well as the McDowell Conference on Philosophy and Social Policy on Philosophy and the Emotions at American University in 2008. My thanks to Alia Al-Saji, Marguerite Deslauriers, and Cressida Heyes for their invitation to McGill, and to Jeffrey Reiman for his invitation to present this work at the McDowell conference. It was there that I was fortunate to meet Jane Flax, whose advice that I address the question of envy in the context of this analysis was especially productive in leading me to the questions I pursue over the rest of the project. The chapter that resulted benefited immensely from the encouragement and criticism of Gail Weiss and Debra Bergoffen in developing the shorter version of chapter 3 that appeared in Hypatia.
The invitation from Lisa K ll and Kristin Zeiler to the conference on Feminist and Phenomenology and Medicine at Uppsala University in 2011 resulted in my beginning chapters 5 and 6 and working out the substance of chapter 4 , which appears in the edited collection resulting from that conference. Comments from the conference participants, especially the prepared response of Kristin Zeiler and Lisa Guntram, helped further clarify my analysis. I am grateful for Gail Weiss s always spirited, and generously critical, presence through developing the last section of this book, usually on the road, but also at home, where I depend on her steadfast presence.
Janice McLaughlin s timely invitation to present at the Policy Ethics and Life Sciences Center symposium at the University of Newcastle in 2012 was the impetus for the central arguments in chapters 7 and 8. It is fitting that Eva Kittay was instrumental at both the beginning and end of this project, for it was her work that got it started and to which I returned.
I am fortunate to have received significant institutional support. I prepared the paper that I describe in the introduction very soon after I started teaching at American University, and I was awarded a research grant that allowed me in 2000 to undertake the first interviews that resulted in chapter 2 . The flexible time granted by the dean of the College of Arts and Sciences allowed me to complete a first draft of the manuscript. I am especially grateful to my colleagues in the Department of Philosophy and Religion who have encouraged the direction of my research. Particular thanks are owed to Gershon Greenberg, Jeff Reiman, and Andrea Tschemplik, who so willingly provided guidance in their areas of expertise, and to Amy Oliver, whose persistently helpful comments were second only to her tireless support as chair of our department. Debra Bergoffen s arrival at American University coincided with the publication of her book, which shaped my thinking about the meaning of human rights. I have relied on Shelley Harshe s wide-ranging expertise and her assistance, which is characteristically above and beyond. I thank my students with whom I have grappled over many of the problems in these pages, particularly those in the graduate seminar in Modern Moral Problems. I hope their influence and the depth of my gratitude are clear to my colleagues and students alike. I thank the American Association of University Women for their award of an American Fellowship at a crucial moment in the development of this project.
My department has afforded me the opportunity to work with a number of students over the years I have worked on this book. These include Kiersten Batzli, John Fantuzzo, Martina Ferrari, Abigail Goliber, Elizabeth McDermott, Amy McKiernan, and Lauren Zahn. I had the privilege of working with Amy, Lauren, and Martina at the point when the research and writing for the project was at its most intense, and their efforts were essential for maintaining the momentum necessary for its completion.
Several individuals provided assistance with special areas. The afternoon I spent with Wilfried Ver Eeke discussing Jacques Lacan made me wish I were fortunate enough to have taken a class with him. On genetic counseling, I m indebted to Caroline Lieber and Taylor Sale, both of whom provided insight and helpful direction. I hope to pay forward David Brodzinsky s immediate willingness to answer my questions about adoption. Carol Bakkhos provided help with my understanding of Halakha, as did Kenneth Prager, who provided insight into its employment in bioethics. Faye Ginsburg and Rayna Rapp helped me think more clearly about the responsibilities of researchers whose scholarship relies on the experiences of individuals. My discussions with Fuambai Ahmadu not only provided a corrective education but also deepened my understanding of questions concerning culture and violation.
The substantial beginnings of a project that began and ended with thinking about ethics and parenting took place before I was a parent myself. Among the gifts of the parents I interviewed were early lessons in the hard and rewarding work of parenting as well as keener appreciation of the ethical reflection it requires. Friendships with other parents-including those that began before any of us had children-have provided occasions for developing the thinking that became the focus of the last part of this book. For their interest and their expertise-in law, medicine, and philosophy, as well as in parenting-I am grateful to Susanna Baruch, Jeanie Bhuller, Sally Bloom-Feshbach, Barbara Butterworth, Bill Ecenbarger, Jeremiah Gallay, Elysa Gordon, Bridgette Kaiser, Matt Kaiser, Meri Kohlbrener, Pei Jen Wang, Jeff Weaver, and Steven Wexler. I am especially grateful for the consistent moral and material support provided by members of the Feder and Di Toro families.
There are, in addition, many whose input and careful readings have been invaluable over the course of this project. Arlene Baratz, Carolyn Betensky, Deborah Cohen, Katrina Karkazis, Rory Kraft, Bo Laurent, Kimberly Leighton, Hilde Lindemann, Sharon Meagher, Iain Morland, Uma Narayan, Mary Rawlinson, Falguni Sheth, Jim Stam, Dianna Taylor, Roberto Toledo, and Cynthia Willett have provided insight, encouragement, and good advice at key junctures over the cour