Majority of females with a life-long experience of CAH and parents do not consider females with CAH to be intersex Journal Articles uri icon

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abstract

  • INTRODUCTION: 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 childhood. METHODS: 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. RESULTS: 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). DISCUSSION: 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. CONCLUSION: Majority of females with CAH and parents believe CAH should be excluded from the intersex designation, and should be considered separately in legislation pertaining to childhood genital surgery.

authors

  • Szymanski, Konrad M
  • Rink, Richard C
  • Whittam, Benjamin
  • Hensel, Devon J
  • Braga, Luis
  • Donahue, Kelly L
  • Eugster, Erica A
  • Fleming, Louise K
  • Frady, Heather M
  • Fuqua, John S
  • Geffner, Mitchell E
  • Hensel, Devon J
  • Kim, Mimi S
  • Kokorowski, Paul
  • Lekarev, Oksana
  • Leland, Brian D
  • Lin-Su, Karen
  • Meyer-Bahlburg, Heino FL
  • Nebesio, Todd D
  • Poppas, Dix P
  • Speiser, Phyllis W
  • Szymanski, Konrad M
  • Rink, Richard C
  • Routh, Jonathan C
  • Whittam, Benjamin
  • Talib, Rashida
  • Yasuda, Patrice M

publication date

  • April 2021