Ethics and the Management of the Patient with Intersex: A Middle Way

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Abstract
We review the controversies surrounding the management of patients born with ambiguous genitalia to determine the strengths and weaknesses of recommendations for clinical practice. Traditional practice involves paternalistic decision making by medical practitioners, including the use of deception and/or incomplete communication of facts about the infant's condition and early surgical intervention to make a "definitive" sex and gender assignment. However, modern scientific evidence about sex-role determination refutes earlier theories supporting the appropriateness and need for early decisions. Some intersex individuals have begun to speak out against their treatment, denouncing the secretive approaches and cosmetic surgery without the specific consent of the (mature) affected individuals. They argue for complete disclosure of information regarding the condition and deferral of all surgery until at least adolescence. The traditionalist practices no longer conform to modern legal or ethical standards of care. The position of some intersex activists ignores the potential for psychosocial harm to intersex children and our society's general and strong deference to parental discretion in decisions for and about their children. We argue for a middle way, involving shared decision making with parents of children with intersex and the honoring of parental preferences for or against surgery.