Sex Assignment: Attitudes and Practices of Pediatric Urologists

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The entire Pediatric Urology section of the American Academy of Pediatrics was surveyed by Diamond and colleagues regarding their decisions in sex of rearing. A questionnaire with 4 sections was mailed to all members; 83% responded. The first 2 sections of the survey concerned the management of 2 cases of ambiguous genitalia with fetal exposure to testosterone – a 46XX patient with congenital adrenal hyperplasia (CAH) and a 46XY patient with cloacal exstrophy with rudimentary phallic structures. Photographs of both patients were included and the questions were related to the sex of rearing and supporting reasons as well as the time of surgery. The third section asked respondents to describe the manner in which decisions regarding neonatal sex assignment were made in their medical center. The final section asked for data on respondent demographic characteristics.

Ninety-nine percent of the respondents strongly agreed that female assignment was most appropriate for the 46XX child with CAH. The most commonly regarded factor for this was the potential for fertility (95%). Ninety-three percent of respondents recommended reconstruction before 18 months of age. Of these 2/3 perform reconstruction at 3 to18 months while 30% recommended and practice reconstruction earlier than 3 months. Thirty percent of these urologists reported caring for fewer than 5 cases over the past 5 years while 48% cared for 5 to10 cases, and 22% cared for more than 10 cases.

The respondents had limited experience with caring for cloacal exstrophy. Eight-four percent had cared for less than 5 patients and only 3% had cared for more than 10 patients. Seventy percent of the respondents agreed that male sex assignment was appropriate for this child. The most highly rated factor of importance in decision making was the likelihood of brain imprinting by androgens. Seventy-nine percent felt that current data showed better outcomes for these patients when reared as males, 64% desired not to remove both gonads in neonates and a similar number (62%) considered the possibility of assisted fertility when older. The difficulty in creating a functional phallus and the high likelihood of surgical success in creating female genitalia were the reasons given when recommending female sex assignment. These respondents also believed that the outcome as females is better.

Respondent characteristics showed that clinicians with more than 15 years of experience were twice as likely to select female assignment for the child with 46XY cloacal exstrophy as compared to respondents with less experience. In addition, respondents who practiced in institutions with fellowship training programs were twice as likely to assign the female sex in this situation. These 2 variables were additive in that female assignment was nearly 4 times more likely in individuals with more than 15 years experience and with training programs. Seventy-one percent of the respondents felt that reconstructive surgery under 18 months of age was optimal for these children. Timing of surgical reconstruction was influenced by 3 factors: established psychological advantages to children of early surgery (88%), psychological advantages to parents from early genital surgery (83%), and the desirability that the patient appears normal at school age (86%). Ninety-four percent of respondents agreed that a team approach should be used in recommending sex assignment and that parental involvement in the decision making assignment was rated as “important” or “very important” by 96%.

The authors pointed out that over the last 10 years the issue of sex assignment in the newborn with ambiguous genitalia has become more controversial. This is because a recent study found that a 46XY cloacal exstrophy patient who underwent female sex assignment and gonadectomy had a 57% rate of spontaneous reassignment to male. It is clear that there are both medical and ethical reasons for reconsidering how these decisions are made. Interestingly, there was a strong consensus regarding the management of a fully masculinized 46XX CAH girl as female, but the main reason for raising the 46XY child with cloacal exstrophy as male was the potential brain imprinting by androgen. The responses certainly seem contradictory. The authors pointed out the limitations of the study and suggest there would be a great interest in surveying pediatric endocrinologists and psychologists with regard to how they make decisions of sex assignment.

Diamond DA, Burns JP, Mitchell C, Lamb K, Kartashov AI, Retik AB. Sex assignment for newborns with ambiguous genitalia and exposure to fetal testosterone: attitudes and practices of pediatric urologists. J Pediatr. 2006;148:445–449.

First Editor’s Comment

This interesting, descriptive manuscript foreshadows a report to be released in the summer or early fall of 2006 of a consensus conference held jointly by members of Lawson Wilkins Pediatric Endocrine Society and the European Society for Pediatric Endocrinology. The considerations and recommendations from this conference will be jointly published in both the US and European pediatric literature. We look forward to reading about a more in depth and comprehensive consideration of sex assignment from multidisciplinary teams in Europe and the US.

William L. Clarke, MD  

Second Editor’s Comment

The paper by Reiner and Gearhart1 (describing the discordant sexual identity in some genetic males with cloacal exstrophy assigned to female sex at birth) seems to have had a major impact, at least on pediatric urologists as shown by their decisions when confronted with such patients, reported by Diamond and colleagues. Controversies regarding the care of individuals with intersexuality are abundant.2 The paper by Meyer-Bahlburg et al clearly described the attitudes of adults with 46XY intersex persons to clinical management, the majority of these adults expressed satisfaction with the assigned gender.3 It should also be kept in mind that sexual dissatisfaction may also be high in the general population.4 These factors need to be considered when clinical decisions are made. The reader is referred to reviews of these papers with editorial comments as well as the ethical guidelines for intersex conditions published in GGH5-7 and to the lead article by Berenbaum8 regarding psychological and methodological perspectives in the management of children with intersex conditions. As stated by Eugster, the most important determinant of outcome of intersex patients may be an individual family’s ability to accept and unconditionally love their child.9

Fima Lifshitz , MD

References - (linked to Pubmed Links)

  1. Reiner WG, Gearhart JP. New Eng J Med. 2004;350:333–341.
  2. Correspondence. New Eng J Med. 2004;350:2204–2206.
  3. Meyer-Bahlburg HF, Migeon CJ, Berkovitz GD, Gearhart JP, Dolezal C, Wisniewski AB . J Urology 2004;171:1615–1619.
  4. Heiman JR. J Sex Res. 2002;39:73–78.
  5. Root AW, Blizzard RB. Growth Genet Horm. 2003;19:6–7.
  6. Growth Genet Horm. 2004;20:42.
  7. Growth Genet Horm. 2004;20:43.
  8. Berenbaum SA. Growth Genet Horm. 2003;19:1–6.
  9. Eugster EA. Arch Pediatr Adolesc Med. 2004;15:428–429.

 

 

 


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