Making Sense of Intersex
Changing Ethical Perspectives in Biomedicine
Publication Year: 2014
Putting the ethical tools of philosophy to work, Ellen K. Feder seeks to clarify how we should understand "the problem" of intersex. Adults often report that medical interventions they underwent as children to "correct" atypical sex anatomies caused them physical and psychological harm. Proposing a philosophical framework for the treatment of children with intersex conditions—one that acknowledges the intertwined identities of parents, children, and their doctors—Feder presents a persuasive moral argument for collective responsibility to these children and their families.
Published by: Indiana University Press
Title Page, Copyright, Dedication, Quote
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Introduction: Disciplinary Limits: Philosophy, Bioethics,and the Medical Management of Atypical Sex
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“The birth of a child with ambiguous genitalia constitutes a social emergency.” So begins the statement published in 2000 by the American Academy of Pediatrics (AA P) titled “Evaluation of Newborn with Developmental Anomalies of the External Genitalia.” What the AA P means by “social emergency” appears to concern the emotional confusion and distress that parents may immediately experience upon learning they have a newborn with atypical sex, meaning a sex anatomy that is neither clearly male nor clearly female...
1. The Trouble with Intersex: History Lessons
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In a short talk he delivered in 2000 at the American Association for the History of Medicine, pediatric endocrinologist Jorge Daaboul reflected on the revelatory character of history in his own practice. He recounts that he had begun to have serious doubts about the standard of care that made imperative the surgical normalization of atypical genitalia in children...
2. “In Their Best Interests”: Parents’ Experience of Atypical Sex Anatomy in Children
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In a study conducted by psychologist Suzanne Kessler, college students were broken into two groups by gender. The women were asked to imagine that they had been born with “clitoromegaly,” a condition defined as having a clitoris larger than one centimeter at birth. In response to a question regarding whether they would have wanted their parents to sanction clitoral surgery if the condition were not life-threatening, an overwhelming 93 percent of the students reported that they would not have wanted their parents to agree to surgery...
3. Tilting the Ethical Lens: Shame, Disgust, and the Body in Question
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Over the last fifty years, people with atypical sex anatomies have been objects of intense medical scrutiny. The term “intersex” encompasses a wide variety of conditions, the common feature of which involves some expression of sexual ambiguity: an intersex body’s appearance doesn’t match its karyotype or its sex of assignment; external genitalia or gonads are not distinctively male or female; or sex chromosomes are atypical in some fashion—there’s an “extra” or missing X or Y, or even, though more rarely, a mosaic of chromosomes that includes a whole variety of combinations.1...
4. Reassigning Ambiguity: Parental Decisions and the Matter of Harm
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Some key elements of the medical management of atypical sex in children have changed since the late 1990s as adults with intersex conditions, and their parents, have spoken out about how the standard of care has affected their lives and as these stories have become an ever more powerful testament to the physical and emotional damage wrought by their treatment...
5. A Question of Ethics as/or a Question of Culture: The Problem of What Is and What Ought to Be
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Trying to understand and to describe the nature of the ethical violation entailed by the standard of care for the treatment of atypical sex anatomies has been the focus of my analysis thus far. The aim of my project up to this point is much like those of others working in the humanities and social sciences who have criticized the practices associated with this standard...
6. Neutralizing Morality: Nondirective Counseling of Parents of Children with Intersex Conditions, 2006–
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Among the most significant changes in the standard of care for children born with sex anomalies has been the definitive move away from what Cheryl Chase characterized in the late 1990s as a “concealment-centered model” of care for children with DSD (Chase with Dreger 2000). Before the publication of the Consensus Statement in 2006, physicians cautioned parents against open discussion of a child’s condition with extended family or friends in order to protect the child from potentially harmful comments that could damage her psychosexual development...
7. Practicing Virtue: A Parental Duty
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Recall the pair of studies presented by Suzanne Kessler in her 1998 book, Lessons from the Intersexed, discussed in chapter 2. In one study, college students were asked to imagine that they had been born with an atypical sex anatomy and to consider what they would want their parents to decide on their behalf. In the other study, students were asked to imagine that they had a child born with atypical sex and to consider what they would decide for their children...
8. Protecting Vulnerability: An Imperative of Care
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Bioethical reasoning takes respect for autonomy as its grounding principle; human rights discourse focuses on the principle of dignity. These forms of ethical reasoning have begun to intersect as prevailing understandings of human dignity have increasingly been cast in terms of autonomy, emphasizing the capacity for rational decision making...
Conclusion: Lessons from Physicians
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Perhaps particularly in medicine, discussions of ethics today have become increasingly difficult to distinguish from discussions concerning “legality.” Asking about what is right or good can too easily become a question of what is permissible or what constitutes culpability. Returning to ancient and early modern sources of ethics, as I have proposed in the last two chapters, may serve to remind us that, while ethical concepts or frameworks figure prominently in the law, questions concerning what is ethical or moral are not identical with those concerning what is legal...
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About the Author
Page Count: 278
Illustrations: 1 b&w illus
Publication Year: 2014