Laura Hermer, J.D., LL.M. Candidate

In November 2000, an infant lay supine on the operating table at a children’s hospital in the United States, draped and prepped for surgery. Only four days old, the child’s problem lay exposed to the view of the urology residents who crowded the operating room: rather than male or female genitalia, the child had a tiny penis with a urethra at its base, two half-scrota which appeared to form a vulva-like structure, and a vagina which abruptly ended, rather than leading to a uterus. Its gonads were nowhere to be found. The surgical task was to find the child’s gonads and to take a sample to determine, among other matters, whether they were comprised of testicular or ovarian material. Upon analysis of the specimen, the laboratory found both types of tissue.

Is gender of primarily biological or cultural derivation? This issue, long contentious in women’s and cultural studies, has come to the medical forefront in recent years with respect to children like the infant above who are born intersex, or with ambiguous genitalia. The condition is not uncommon. Approximately one out of 2000 children are born with some form of ambiguous genitalia. M. Blackless, A. Charuvastra, A. Derryck, A. Fausto-Sterling K. Lauzanne, and E. Lee, "How Sexually Dimorphic Are We," Am. J. Human Bio. Such conditions can range from hypospadius, where a chromosomally XY child is born with a small penis and a urethra which exits along the shaft or the base rather than from the head, to congenital adrenal hyperplasia, in which an XX girl develops externally-male genitalia, due to a malfunctioning of the adrenal gland. M.M. Grumbach, and F.A. Conte, "Disorders of Sex Differentiation." in Williams Textbook of Endocrinology, eds. J.D. Wilson, D.W. Foster, H.M. Kronenberg, and P.R. Larsen, (Philadelphia: W B Saunders, (1998):1303-1425).

Surgeons frequently recommend that such children should undergo sex reassignment surgery early in infancy, out of concern for the child’s gender development and later sexual functionality. The theory behind this practice, as developed by John Money at Johns Hopkins University, holds that all infants are gender-neutral at birth, and remain so for approximately 18 – 24 months. Social imprinting and education, rather than biology, are the critical factors in gender development. The only critical physiological factor is the presence or absence of a penis. K. Kipnes, M. Diamond, "Pediatric Ethics and the Surgical Reassignment of Sex," J. Clinical Ethics, September 1998 (citing J. Money and A. Ehrhardt, Man and Woman, Boy and Girl (Baltimore: John Hopkins University Press, 1972)). Thus, if a surgeon removes a child’s penis at a sufficiently young age and creates a vagina instead, the theory dictates that the child should, with appropriate social training and hormonal therapy, become gender-identified as a girl. Such surgeries can, with reasonable reliability, result in genitalia which appear "normal" to the casual observer. However, the surgery can cause desensitization or even chronic pain, and does not create genitalia which appear "normal" upon close inspection. See Cheryl Chase, Surgical Progress Is Not the Answer to Intersexuality, 9 J. Clinical Ethics 385, 386 (1998).

In most cases, sex revision surgery is not necessary to preserve life or limb. (Surgery is arguably necessary in early infancy for children with extrophy, where the bladder and other pelvic organs are externalized.) Rather, the imperative for parents and surgeons to act quickly usually results from the short window during which it is thought that a child can have its gender successfully reassigned through a sex change operation. The notion that such reassignment can be successful, however, has come under attack in recent years. Some individuals who underwent sex-revision surgery in infancy now vociferously protest the practice, arguing that the surgery mutilated them or assigned them to a sex with which they did not identify. (The Intersex Society of North America is perhaps the most vocal opponent of the surgical revision of intersex children in infancy. See http://www.isna.org (last viewed on September 22, 2001).) A number of psychologists, bioethicists and researchers have also spoken out against the practice in light of the experience of a number of intersex individuals, and have suggested new guidelines for surgical revision. See, e.g., K. Kipnes and M. Diamond, supra.

Given the controversy, should the parents of an intersex infant be permitted to consent to sex revision surgery on behalf of the infant? Under the "best interests" standard for surgical consent, it is no longer apparent whether the surgery is indeed in the child’s best interest. Intersex activists argue forcefully that surgery in infancy mutilates children and takes away their right to self-determination. However, in many cases, failure to perform the surgery can leave the child open to locker room taunts and stigmatization, as well as the prospect of future surgery from which an adult will heal less well than a child. Moreover, with respect to the most ambiguous intersex cases, one must also ask whether, in a society as polarized by sex and gender as ours, it is reasonable to expect a child to be successfully raised as neither male nor female. The "substituted judgment" standard for surgical consent is just as problematic, as it begs the central issue of self-determination.

In light of the present evidence and the growing controversy, it appears that the present bias in favor of automatic surgical revision of most intersex children should be revised. (For several examples of new proposals for the treatment of intersex children, see Milton Diamond and Keith Sigmundson, "Management of Intersexuality Guidelines for Dealing With Persons With Ambiguous Genitalia," American Journal of Diseases of Children (October 1997); William Reiner, "Sex Assignment in the Neonate With Intersex or Inadequate Genitalia," American Journal of Diseases of Children (October 1997); and the Intersex Society of North America’s website, at http://www.isna.org.) The law should not permit parents to consent to sex revision surgeries on behalf of intersex children who are chromosomally XX or XY. Rather, the decision for such a surgery should be left to the child, once it reaches the age of majority. (Exceptions should be made in the unusual cases where the child also has life-threatening pelvic abnormalities (such as extrophy) which will require significant genitourological surgery to correct.) On the other hand, in those rare cases where a child is truly of mixed sex (as in the example of the newborn given above), a parent should retain normal legal authority to consent to sex revision surgery on behalf of the child. In such cases, the abnormalities are sufficiently significant and the genetic component sufficiently undetermined to militate in favor of early intervention.

10/23/01