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 9

First, those who promote informed consent must be careful not to concede too much so as to close off future legal arguments. For example, the ABA resolution unnecessarily promotes informed consent as the best option:
Adoption of ... a heightened informed consent standard would provide the best outcome for intersexed children, their parents, and the medical community. Intersexed children and their parents could be confident that the decisions that are being made on behalf of the intersexed infant are based upon full information and keep the child's best interests as the paramount concern. [FN129]

This paragraph closes off any argument that informed consent is the "second- best" option to a moratorium or that parents are unable to consent to genital- normalizing surgery due to a conflict between the parents' and the child's interests.

Some commentators have already argued that halting surgery will not be necessary if "more complete information" is provided to parents via new informed consent standards. [FN130] These opponents of a complete moratorium argue that as long as physicians explain the various options available to parents, urge parents to avoid hasty decisions, and explain the lack of consensus within the medical community, the option of genital surgery should still be made available to parents. [FN131] To its supporters, this is seen as the most reasonable approach because it is the one most likely to be acceptable to the medical community. [FN132] Again, this argument concedes that parents, with full information, are empowered to make the decision.

Even commentators who ultimately believe that parents may never be able to render valid legal consent adopt a paradoxical approach in their discussion of informed consent. For example, Kishka-Kamari Ford argues that "there is strong evidence that parents are not competent to give consent to genital-normalizing surgery on behalf of their intersexed infants" in part because shame *150 and stress may cause parents to make impulsive decisions. [FN133] However, Ford concludes her Note by arguing that:
The fact is that there is just not enough accurate information available on the benefits or consequences of genital-normalizing surgery for even the most well-meaning and contemplative parents to make truly informed decisions for their infants.
The current model of treatment for intersexed infants fails the test for legal informed consent at every step. No matter how well-meaning their intentions, parents are incapable of giving legal informed consent to the performance of genital-normalizing surgery on their infants because the current model of treatment does not offer these parents the tools that they need to come to an informed, voluntary, competent decision. [FN134]

While likely inadvertent, Ford's conclusion implies that adequate information will remedy any present legal problems with parental consent to the surgery and that once they have the "tools that they need" parents can make the decision for their child. This conclusion seems to contradict Ford's earlier point that parents may not be competent to give consent due to the inherent stress of learning that their child is intersexed.

Ideally, the legal community should support heightened informed consent standards while explicitly noting that the ultimate goal is a moratorium. For this reason, legal commentators such as Ford as well as those working on the ABA resolution should make it clear that heightened informed consent is only a first step.

The proposed ABA resolution also highlights a second danger in the informed consent approach--conceding too much to doctors. The resolution states that after the adoption of the resolution: "Physicians could be confident that if they provide full information and follow these procedures that the consent signed by the patents would be truly informed. Therefore, physicians would not be liable for the decisions that parents are making." Many doctors still believe that early surgery is the right choice and characterize parents who do not opt for surgery as unsophisticated, overly religious, or poor. [FN135] This persistent belief in the beneficial nature of the surgery, coupled with support of the compromise approach, suggests that doctors may only be concerned with absolving themselves of potential legal liability. [FN136] Thus, the informed consent *151 approach may reduce the incentive for doctors to continue research into the problems associated with intersex surgery.

CONCLUSION

Those who promote informed consent should recognize the risks and deficiencies in such an approach. Most importantly, efforts such as the ABA resolution should be rephrased to prevent the medical community from

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