10 Chapters
Medium 9780253012241

6 Neutralizing Morality: Nondirective Counseling of Parents of Children with Intersex Conditions, 2006–

Ellen K. Feder Indiana University Press ePub

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.

See All Chapters
Medium 9780253012241

4 Reassigning Ambiguity: Parental Decisions and the Matter of Harm

Ellen K. Feder Indiana University Press ePub

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.

See All Chapters
Medium 9780253012241

8 Protecting Vulnerability: An Imperative of Care

Ellen K. Feder Indiana University Press ePub

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.

See All Chapters
Medium 9780253012241

1 The Trouble with Intersex: History Lessons

Ellen K. Feder Indiana University Press ePub

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).

See All Chapters
Medium 9780253012241

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

Ellen K. Feder Indiana University Press ePub

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).

See All Chapters

See All Chapters