Georgetown Law Journal
November, 2003
Westlaw ©2003 cite as 92 GEO L.J. 129 reprinted with permission of the author

Note

*129 WHO DECIDES? GENITAL-NORMALIZING SURGERY ON INTERSEXED INFANTS
Alyssa Connell Lareau [FNa1]

page 8

to this lack of consensus has been similar. Both groups see the paternalistic view that doctors should make decisions regarding surgery and sex assignment as outdated and in violation of modern legal and ethical standards of care. [FN111] Recognizing that a moratorium may not be feasible, moderates attempt to ensure that doctors provide complete and accurate information regarding intersexuality to enable parents to provide informed consent to the operation. [FN112]

*147 The doctrine of informed consent provides that unless an individual's medical decisions are made on a fully-informed basis, a doctor performing a medical procedure on that individual commits the tort of battery. [FN113] The Supreme Court has recognized this doctrine as generally required, [FN114] but the application of informed consent varies somewhat from state to state because of the doctrine's common law roots and occasional codification. [FN115] The basic premise of informed consent is that in order to make the patient informed, the doctor must provide adequate information about the proposed treatment, its efficacy, its risks, and its alternatives. [FN116] The doctor must allow the patient to make a voluntary decision and must not attempt to influence or coerce the patient in any way. [FN117] For the patient's decision to be competent, the patient must have an appreciation of the procedure's nature, extent, and probable consequences. [FN118] In situations where the patient is an infant, courts use "substituted judgment" and require the parents to give informed consent, based on the assumption that parents know what is in the best interests of their children. [FN119]

In the context of genital-normalizing surgery, many advocates in the legal community argue that parents are currently unable to give informed consent because doctors' existing practices preclude a full disclosure of the information necessary to make an informed, voluntary, and competent decision. [FN120] Many physicians have reacted positively to this criticism and have attempted "to *148 determine ... how physicians can better work with parents in helping them decide for their infant with an intersex problem the gender assignment and the timing of genital surgery if it is required." [FN121] This has led to the development of a compromise that medical advocates have called a "middle way" because it involves physicians making recommendations to parents of intersex children, but then honoring parental preferences for or against surgery. [FN122]

Under the "middle way" model, parents would be informed about the diagnosis, and would be advised regarding "the realistic potential for satisfactory altering of abnormal genital structures," and the potential loss of sexual sensitivity. [FN123] When speaking with parents, doctors would explain that there is a lack of consensus within the medical community about the necessity of this surgery. [FN124] Proponents of this compromise approach see themselves as informing and advising the parents on the following issues, which, they contend, some intersex activists ignore: (1) the potential for psychosocial harm to intersex children when years pass before a final decision is made; and (2) society's strong deference to parental discretion in decisions about their children. [FN125]

Many legal advocates, bolstered by the efforts of the medical community to promote the "middle way," believe that the focus on informed consent will facilitate a change in societal practices. [FN126] Some intersex advocates are confident that fully-informed parents would make the decision to defer surgery:
Providing parents with a fuller explanation of the risks, including the recently-reported failures of treatment and information about the successful adaptation of individuals raised without surgery, may well curb parental consent. After all, few parents would probably consent to such extensive treatment if physicians reveal that there is no scientific evidence supporting the premise on which treatment is based and that the child may ultimately reject the treatment and be left worse off for having undergone it. [FN127]

This confidence has led some in the legal community to adopt informed consent as an immediate goal that could provide an impetus to eventually eliminate genital-normalizing surgery altogether.

IV. THE UNINTENDED CONSEQUENCES OF THE INFORMED CONSENT STANDARD

The search for a "middle way" has most recently manifested itself in an ABA proposed resolution that advocates for greater informed parental consent for *149 genital-normalizing surgery performed on intersex infants. [FN128] While the mere introduction of this resolution in the ABA committee process evinces the potential for the informed consent approach to effectuate change, it also highlights dangers inherent in the current debate over informed consent.

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