Making Sense of Intersex: Changing Ethical Perspectives in Biomedicine

Making Sense of Intersex: Changing Ethical Perspectives in Biomedicine

Making Sense of Intersex: Changing Ethical Perspectives in Biomedicine

Making Sense of Intersex: Changing Ethical Perspectives in Biomedicine

Synopsis

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.

Excerpt

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.

The term “social emergency” conveys the urgency of a situation that can effect considerable damage to the vulnerable child and to the fragile—for newly forming—bonds between parents and children. Without saying so outright, the AAP’s description of the birth of children with ambiguous genitalia as a social emergency expresses the apparent, and apparently obvious, discomfort that atypical sex generally provokes. But the term also raises the question of the place of medicine in addressing a matter not of medical urgency, but of social urgency. In seeking a response to this question, perhaps we may be guided by the AAP’s statement itself, which goes on to detail the variety of diagnostic and surgical tools that may “fix” the problem of sex that bodies with ambiguous genitalia present.

Contemporary French philosopher Luce Irigaray famously opens her book An Ethics of Sexual Difference with the claim that “sexual difference is one of the major philosophical issues, if not the issue, of our age” (1993 [1984], 5). While I think many people believe that the urgent status attributed to the birth of a child . . .

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