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Correspondence to: Konrad M. Szymanski, Division of Pediatric Urology Riley Hospital for Children at IU Health, 705 Riley Hospital Dr., Suite 4230, Indianapolis, IN, 46202, USA, Tel.: +1 317 944 7446; fax: +1 317 944 7481
To assess opinions of females with CAH, and parents of females with CAH, about designating
this population “intersex,” particularly in legislation about genital surgery during
We conducted a mixed-methods (quantitative and qualitative) anonymous cross-sectional
online survey of females with CAH (46XX, 16+years old) and independently recruited
parents of girls with CAH (2019–2020) diagnosed in first year of life from the United
States. A multidisciplinary CAH team drafted the survey in collaboration with women
with CAH and parents. Fisher's exact test was used to compare female and parent responses.
A qualitative thematic approach was used to analyze open-ended answers for emergent
categories of reasons why CAH females should or should not be considered as intersex.
Of 57 females with CAH participating (median age: 39 years, 75.5% of ≥25year olds
had post-secondary degree), all had classical CAH and 93.0% underwent genital surgery
at median 1–2 years old. While 89.5% did not endorse the intersex designation for
CAH, the remaining 5.3% did (5.3% provided no answer, Summary Figure). Most CAH females (63.2%) believed CAH females should be considered separately in
“any laws banning or allowing surgery of children's genitals” (19.3% disagreed, 17.5%
neutral, 0.0% no answer). Most common themes identified by females with CAH not endorsing
an intersex designation were: normal female internal organs, sex chromosomes, personal
identity, genital appearance, issues with language, hormones, and those endorsing
it: genital appearance, community/group experiences, topic complexity.
Overall, 132 parents of females with CAH participated (parent/child median ages: 40/11
years, 81.7% of ≥25year olds had post-secondary degree). All children had classical
CAH and 78.8% underwent surgery at median <1 year old. While 95.5% of parents did
not endorse the intersex designation for CAH, 2.3% did (2.3% no answer), similar to
females (p = 0.29). Most parents (81.1%) believed CAH females should be considered
separately in legislation (9.1% disagreed, 6.1% neutral, 3.8% no answer), a slightly
higher percentage than females (p = 0.01).
Echoing previously published disagreement with clinically designating CAH females
as intersex, majority of CAH females and parents oppose a legal intersex designation.
Differing opinions among females and parents strengthen concern about a one-size-fits-all
approach to legislation about childhood genital surgery. Differences in opinions between
female and parent responses, while statistically significant, were relatively small.
SB 408 Nevada: an act relating to health care; establishing conditions for the performance on a child of any surgical procedure to assign anatomical sex; providing for disciplinary action against certain providers of health care for any violation of those conditions; and providing other matters properly relating thereto. 2017 (ed2017)
International consensus conference on intersex organized by the Lawson Wilkins pediatric endocrine S, the European society for paediatric E. Consensus statement on management of intersex disorders. International consensus conference on intersex.
Despite our evolution to a multidisciplinary care paradigm, despite exponential increases in our medical knowledge, and despite use of that knowledge for shared decision-making with families, we are faced with ongoing controversy in the care of individuals born with differences of sex development, regardless of etiology.