Genital Alteration and Intersex: a Critical Analysis

The committee advocated for a change in nomenclature, stating that the term “intersex” (among others) is controversial, confusing to practitioners and parents, and potentially experienced as pejorative by patients. Instead, they proposed the term “disorders of sexual development” (DSD) to describe “congenital conditions in which development of chromosomal, gonadal, or anatomical sex is atypical” [4]. While some—namely practitioners and parents—have responded positively to this change in nomenclature, others—namely intersex activists—are troubled by its pathologizing connotation. From their perspective, to say that someone has a disorder of sexual development is to say that their body is somehow wrong instead of merely different. Opinions about language are certainly still nonhomogeneous, with some patients self-identifying as intersex and others describing DSD as a medical condition they have rather than a salient part of their identity. Given this dichotomy, for the remainder of this article, we use the term DSD to mean “differences of sexual development,” as has been recommended by the Accord Alliance [5•]. This language gestures towards the wide-degree of sexual variance among all bodies and suggests that DSD is simply a less common set of genotypic and/or phenotypic traits, rather than inherently abnormal or pathological. While less frequently used, “variations in sex development (VSD)” is another term that moves away from the language of “disorder” towards a recognition and affirmation of bodily diversity [6].

While this review focuses specifically on genital surgeries, we note that recent literature also contends with establishing best practices for gonadectomy in patients with certain DSDs. In the past, practitioners tended to uniformly approach the presence of certain gonads in intersex children with pronounced concern, citing increased risks of cancer. Gonadectomy in infancy and early childhood was almost always performed as a precautionary measure. That said, recent studies suggests that the gonadal tumor risk varies based on the specific DSD a patient has and that risk of malignancy is not high in infants and young children. Laparoscopic techniques have also allowed for less invasive monitoring of the gonads. Research consequently suggests that gonadectomy can be delayed until a child is older and can participate in decision-making processes in many instances [11, 12].

Literature was reviewed from a wide-range of sources including clinical medical journals, publications on bioethics and medical humanities, governmental and legal policy, sociological research, and publications released by intersex activists and advocacy organizations. Of about 50 sources examined, the most pertinent were included in this brief commentary. Sources were published primarily in the USA and Western Europe, with the addition of several articles published in the Middle East, Eastern Asia, and Southeastern Asia.

According to the American Academy of Pediatrics, in the USA, the medical community has largely accepted that “older adolescents deserve to be treated as autonomous medical decision-makers… [and that] children after ages 12 or 13 who appear mature have or ought to have the right to consent or to withhold consent to general medical treatment”—what is referred to as the “mature minor rule” or “mature minor doctrine.” That said, most states do not have mature minor statutes that function as complete, legal exceptions from parental consent policies [15]. Thus, unlike in cases where a child is legally emancipated from their parent(s)/guardian(s) and is therefore an autonomous decision-maker, the mature minor rule does not allow a minor patient to make medical decisions that contradict parental consent [15, 16]. Thus, in the case of DSD treatment, the recommendation that medically unnecessary procedures be delayed until the minor patient can provide informed consent is not currently a legal mandate but instead functions as an ethical demand. Legal scholars are investigating whether a precedent exists within current case law that could be applied in cases of DSD to more resolutely buttress minor patient autonomy in decision-making processes. One case being investigated is Bellotti v. Baird, in which “the Court determined that notwithstanding the limitations on minors’ rights, the right to privacy with respect to abortion can outweigh the interests of the state and the parent” [14•].

Again, Diamond and Garland assert that there is a lack of research on the outcomes of delayed surgery because of the still largely unchallenged norm of performing such procedures during infancy and childhood [9•].

In this context, we draw from intersex advocacy work in defining genital cosmetic surgery as any number of procedures that are medically unnecessary (e.g., are neither life-sustaining nor crucial for the patient’s physical health) [2, 3, 5•, 7, 9•, 17, 20, 21, 27••]. When the primary purpose of these procedures is to “normalize” the appearance of genitalia (i.e., clitorectomy; phalloplasty) or to alter the function of genitalia (i.e., vaginoplasty; hypospadias repair) for non-life sustaining purposes, they categorically fall within the scope of cosmetic procedures. For example, the reduction of a child’s clitoris to produce a more “typically female” appearance is an esthetic surgery. Hypospadias repair to treat urine obstruction is medically necessary. On the other hand, hypospadias repair to allow a child to urinate standing up is not medically necessary. Instead, this alteration of function is esthetic insofar as it is rooted in social norms of males urinating while standing rather than physical health needs. Some argue that the aforementioned procedures are therapeutic rather than cosmetic, largely insofar as they will relieve the patient of psychological distress in the future [10, 17]. The issue with this reasoning is that it assumes that all patients will have psychological distress associated with their genital appearance and/or function. This is not always the case and can only be ascertained once the patient is of an age where they can be actively involved in decision-making processes [2, 3. 9•].