Disorders of Sexual Differentiation: Cosmetic Genital Surgery
Disorders of Sexual Differentiation: Cosmetic Genital Surgery
Although there is growing consensus among current policies regarding the care of individuals with DSD, there remain varying opinions regarding the most controversial: early cosmetic genitoplasty. There is no doubt sex and gender are complex, and whether to perform or delay genital surgery remains a robust debate fraught with ethical controversy. Although it was believed that early genital surgical alteration relieved parental distress and improved parent-infant bonding, this is anecdotal. Based on the work of ISNA and Accord Alliance, in the absence of severe clitoromegaly, some parents are less inclined to choose surgical alteration for infants.
The Consensus Statement on Intersex Disorders and Their Management (Houk et al., 2006; Hughes, Houk, Ahmed, Lee, & LWPES 1/ESPE2 Consensus Group, 2006) has amended earlier guidelines and now recommends surgical intervention only in cases of severe virilization. Although not totally in concert with the initial crusade of INSA, it is a step in the right direction. In addition, the Consensus Statement reiterates the importance of preserving orgasmic and erectile sensation by refocusing on genital function, not just cosmetic appearance (Consortium on the Management of Disorders of Sex Development, 2006; Gillam, Hewitt, & Warne, 2010; Houk et al., 2006; Lee, Houk, Ahmed, & Hughes, 2006) (see Table 3 ). Based on these changes, some parents may delay genital surgery in infancy. If this trend continues, providers may not only encounter individuals with DSD having undergone gender reassignment and early genital surgery, but also surgically naïve individuals with mixed gender phenotypes.
There is no doubt health care providers and grassroots movements will continue to debate, and treatment guidelines will continue to be revised, to determine if, when, or to what extent parents and providers should intervene to normalize the physical appearance of genitalia for non-consenting infants and children with DSD. Unfortunately, there is no straightforward answer. The benefits and limitations of each case must be weighed carefully and the best decisions made from biological, surgical, and psychosocial perspectives. No one decision or approach is right for every individual. It is, therefore, imperative that despite what providers and parents may believe, in most cases, there is no surgical urgency to genitoplasty and gonadectomy. Eliminating the preconceived notion that surgical decision-making for infants is emergent provides opportunities to listen to the adult community living with DSD and reassess the longstanding traditionalist approach to early genital surgery for intersex infants. When considering treatment and surgical options, providers and parents must apply the moral principles of autonomy, beneficence, and nonmaleficence to ensure the best interests and safe decision-making for the non-consenting infant. In the end, care providers and parents must focus on the ultimate goal: To do what is in the "best interest" of the infant, child, and autonomous adult.
What the Future Holds
Although there is growing consensus among current policies regarding the care of individuals with DSD, there remain varying opinions regarding the most controversial: early cosmetic genitoplasty. There is no doubt sex and gender are complex, and whether to perform or delay genital surgery remains a robust debate fraught with ethical controversy. Although it was believed that early genital surgical alteration relieved parental distress and improved parent-infant bonding, this is anecdotal. Based on the work of ISNA and Accord Alliance, in the absence of severe clitoromegaly, some parents are less inclined to choose surgical alteration for infants.
The Consensus Statement on Intersex Disorders and Their Management (Houk et al., 2006; Hughes, Houk, Ahmed, Lee, & LWPES 1/ESPE2 Consensus Group, 2006) has amended earlier guidelines and now recommends surgical intervention only in cases of severe virilization. Although not totally in concert with the initial crusade of INSA, it is a step in the right direction. In addition, the Consensus Statement reiterates the importance of preserving orgasmic and erectile sensation by refocusing on genital function, not just cosmetic appearance (Consortium on the Management of Disorders of Sex Development, 2006; Gillam, Hewitt, & Warne, 2010; Houk et al., 2006; Lee, Houk, Ahmed, & Hughes, 2006) (see Table 3 ). Based on these changes, some parents may delay genital surgery in infancy. If this trend continues, providers may not only encounter individuals with DSD having undergone gender reassignment and early genital surgery, but also surgically naïve individuals with mixed gender phenotypes.
There is no doubt health care providers and grassroots movements will continue to debate, and treatment guidelines will continue to be revised, to determine if, when, or to what extent parents and providers should intervene to normalize the physical appearance of genitalia for non-consenting infants and children with DSD. Unfortunately, there is no straightforward answer. The benefits and limitations of each case must be weighed carefully and the best decisions made from biological, surgical, and psychosocial perspectives. No one decision or approach is right for every individual. It is, therefore, imperative that despite what providers and parents may believe, in most cases, there is no surgical urgency to genitoplasty and gonadectomy. Eliminating the preconceived notion that surgical decision-making for infants is emergent provides opportunities to listen to the adult community living with DSD and reassess the longstanding traditionalist approach to early genital surgery for intersex infants. When considering treatment and surgical options, providers and parents must apply the moral principles of autonomy, beneficence, and nonmaleficence to ensure the best interests and safe decision-making for the non-consenting infant. In the end, care providers and parents must focus on the ultimate goal: To do what is in the "best interest" of the infant, child, and autonomous adult.