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Written surgical informed consent elements in pediatric differences of sex development: pediatric urologist and

Zoe K Lapham1, Melissa Gardner1, Sydney Sheinker1,2

  • 1Susan B. Meister Child Health Evaluation and Research Center, Department of Pediatrics, University of Michigan Medical School, Ann Arbor, MI, United States.

Frontiers in Urology
|August 8, 2025
PubMed

Insights

Pediatric specialists agree on key informed consent elements for differences of sex development (DSD) surgeries. However, endocrinologists

Area of Science:

  • Pediatric Surgery
  • Endocrinology
  • Medical Ethics

Background:

  • The surgical management of pediatric differences of sex development (DSD) is complex and controversial.
  • Informed consent for DSD-related genital surgery requires careful consideration of multiple factors.

Purpose of the Study:

  • To examine North American pediatric urologist and endocrinologist perspectives on informed consent for pediatric DSD surgery.
  • To identify recommended and existing informed consent elements for written consent documents.

Main Methods:

  • Focus groups with pediatric urologists and endocrinologists identified key informed consent elements.
  • Web-based surveys in 2003 and 2020 assessed agreement with and inclusion of these elements in clinical practice.

Main Results:

  • Four core elements were identified: ongoing debate, need for multiple procedures, potential for gender change/reversal, and non-surgical alternatives.
  • A majority of specialists (79%-98%) endorsed these elements across both survey years.
  • Endocrinologists were less familiar with current consent document inclusions compared to urologists.

Conclusions:

  • Specialists widely agree on essential informed consent elements for pediatric DSD surgery.
  • Ensuring endocrinologist familiarity with consent document specifics is crucial.
  • The role of non-surgeon team members in the informed consent process remains an open question.
Abstract

Keywords:
differences of sex development (DSD)disorders of sex development (DSD)genital surgeryinformed consentintersexpediatric

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