Making Sense of Intersex: Changing Ethical Perspectives in Biomedicine

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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.

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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 (AAP) titled “Evaluation of Newborn with Developmental Anomalies of the External Genitalia.” What the AAP 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. “Words spoken in the delivery room,” the statement continues, “may have a lasting impact on parents and the relationship with their infant.” It is especially important that medical personnel take care in discussions of “the infant [who] should be referred to as ‘your baby,’ or ‘your child’—not ‘it,’ ‘he,’ or ‘she’” (2000, 138). As damaging as a mistaken assignment of gender would be for the parents and the child is the kind of treatment that denies the infant’s personhood. We may readily appreciate the difficulty parents and medical professionals face when they are so challenged by an infant’s anatomy that they risk causing harm to the child and to the relationship between the child and those charged with caring for the child.

 

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. Though this was the standard in which he had been trained—in the tradition of Lawson Wilkins, the founder of pediatric endocrinology, and John Money, the preeminent psychologist of sexual difference—he began to pose to his colleagues the questions he had come to ask himself, namely, whether the standard was genuinely in the best interests of their young patients. The uniform responses to his questions, he told his audience in 2000, yielded two arguments in defense of the standard. First, “intersexed individuals,” his colleagues told him, “could not possibly live normal lives as intersexed individuals and . . . the only chance they had for happiness and psychological well being was the establishment of a secure male or female gender identity. Second, there simply was no precedent for [such individuals] living as normal people in our society” (Daaboul 2000).

 

2 “In Their Best Interests”: Parents’ Experience of Atypical Sex Anatomy in Children

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For Ruby, in memoriam

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. Kessler reports, “Women predicted that having a large clitoris would not have had much of an impact on their peer relations and almost no impact on their relations with their parents . . . they were more likely to want surgery to reduce a large nose, large ears, or large breasts than surgery to reduce a large clitoris” (1998, 101).1 These findings, Kessler reflects, are not surprising given that the respondents characterized genital sensation and the capacity for orgasm as “very important to the average woman, and the size of the clitoris as being not even ‘somewhat important’” (101–102). Men in the study were faced with a different dilemma, the one facing parents of boys with “micropenis,” a penis smaller than the putative standard of 2.5 centimeters stretched length at birth. Their question was whether to stay as male with a small penis or to be reassigned as female. More than half rejected the prospect of gender reassignment. But according to Kessler, “That percentage increases to almost all men if the surgery was described as reducing pleasurable sensitivity or orgasmic capability. Contrary to beliefs about male sexuality, the college men in this study did not think that having a micropenis would have had a major impact on their sexual relations, peer or parental relations, or self-esteem” (103).

 

3 Tilting the Ethical Lens: Shame, Disgust, and the Body in Question

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Whom do you call bad? —One who always wants to put to shame.

What do you consider most humane? —to spare someone shame.

What is the seal of liberation? —No longer being ashamed in front of oneself.

—Friedrich Nietzsche, The Gay Science

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

The treatment protocols for infants and children with intersex conditions—which have frequently involved cosmetic genital surgery and sometimes sex reassignment—were originally formalized by psychologist John Money in the 1950s. For Money and his collaborators, “the problem” of intersex was the incongruence between the “biological sex” (which could be a confusing matter in cases of hermaphroditism) and what they called “gender role,” the combination of one’s social presentation and individual identity as masculine or feminine. Surgical intervention and hormone therapy, they argued, could facilitate this congruence. In their view, early intervention was necessary to ensure the consistent socialization—particularly with regard to parents’ certainty about their child’s sex of assignment—that would avert the “psychological disturbance” for which children would otherwise purportedly be at risk (Money 1955; quoted in Karkazis 2008, 55).

 

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. Increasing numbers of pediatric specialists now reaffirm the good intentions that motivated earlier practices, but they also acknowledge the clinical ignorance, even clinical arrogance, that governed care—especially the failure to convey to parents what one group of practitioners describes as the potential side effects of surgery, including the likelihood of damage to erotic sensation (e.g., Dayner et al. 2004; see also Lee and Houk 2010, 1). More recently, researchers have also reported on the lack of certainty or confidence among physicians themselves with regard to the standard of care (Karkazis et al. 2010). Today, specialists in the treatment of DSD have embraced informed consent; a new model of “shared decision making” (Dreger et al. 2010; Karkazis and Rossi 2010) is coming to the fore.

 

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. For all the power and cogency of that body of work, and for all the change that has occurred, the standard of care that makes normalization of the bodies of children with DSD the first and best option remains largely intact. The individual and collaborative work that has laid out ethical problems entailed by the standard of care—by Suzanne Kessler, Anne Fausto-Sterling, Cheryl Chase, and Alice Dreger, and then by those working in their wake—has not resulted in making cosmetic normalization a problem of another time. Trying to understand how it can be that the revelation of ethical violation has not resulted in change equal to that revelation is the focus of this chapter and the one that follows.

 

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. The risk posed by such comments was understood as a threat to the “concordance” a child ought to experience between the appearance of her body and her assigned sex. It was for this same reason that parents were also advised not to discuss the child’s condition with the child herself (B. Wilson and Reiner 1998, 363). Today there is little question that the revised standard requires physicians to honestly and forthrightly discuss with parents the nature of their children’s conditions. The paternalism that prevailed during most of the second half of the twentieth century in the experiences of the families I discussed in chapter 2 is increasingly a thing of the past.

 

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. In their responses to the first study, students strongly opposed surgery on their own behalf while nearly 100 percent of students participating in the second study would support normalizing surgery for their own children.

On the one hand, it is easy to make sense of these studies. Responses to the question posed in the first study confirm how unappealing the prospect of compromising erotic response for the sake of cosmetic enhancement appears to be. Responses to the question in the second study support the idea that as parents we want what is best for our children and, if it is possible, to spare children stigma, particularly that associated with atypical sex. Certainly, this study seems to say, we parents should do what we can to defend our children against any harm we imagine could result from such a difference. But, on the other hand, even if we can understand the students’ responses to the individual studies, bringing them together demands, once more, that we ask how it can be that parents would consent to procedures on behalf of their children that they would decline for themselves.

 

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. This intersection is evident in the recommendations of the German Bioethics and Intersex Group (Wiesemann et al. 2010), which grant priority to what the group identifies as parental rights—rights conceived in terms of parental autonomy—to make decisions on behalf of their minor children. Such rights, they argue, are constitutive of a human right to “familial privacy.” As they present it, this right serves to protect the cultural and religious commitments of social groups and functions to protect individuals within these groups. Focused on familial autonomy and parental rights, there is scant attention in the recommendations to what we might expect to be the more salient consideration of the place of moral obligation in making irreversible and potentially damaging decisions on behalf of children in the absence of medical necessity. The construction of the question raised by normalizing interventions for atypical sex anatomies by the Bioethics and Intersex Group exemplifies the power of the concept of autonomy in bioethical reasoning; its constricted view of the moral problems presented by the standard treatment of children with atypical sex anatomies illustrates, too, what moral philosopher Onora O’Neill (2002) famously identified as a fundamental flaw in the formulation of bioethics, namely, the failure to investigate more thoroughly the grounding principle of autonomy.

 

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. So many practices in which we engage in our lives are matters of rich ethical reflection falling outside the realm of legal regulation.

When I began researching the history of bioethics fifteen years ago, I was surprised by the incongruity between the conception of what was in medicine called “ethics” and the understanding of ethics that I had received in my training in philosophy. Many disciplines have been developed for—and are well suited to—crafting answers to questions. But philosophy is first and foremost a discipline developed to ask questions. If we do not ask why we think as we’ve been taught, or why we do as we’ve been trained or as we have become accustomed, we will take for granted that what we think is true and what we do is right. Just as important, as Socrates first demonstrated, is asking whether the questions we ask are the right questions. Do they move us to consider or investigate what is important, vital, true, consequential? Are the questions informed questions, themselves grounded in knowledge that is reliable? And, we should ask, why do we ask the questions we ask? For what purpose, to what end, and for whose benefit do we ask them?

 

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