Disorders of Sex Development: A Survey of Clinical Practice

Faculty Contact: David E. Sandberg, PhD

Background:
Disorders of Sex Development (DSD) are defined as congenital conditions in which development of chromosomal, gonadal, or anatomic sex is atypical. Clinical care for affected children is a contentiously debated topic. Since the mid-1950s the dominant policy has been to assign children born with ambiguous genitalia to the gender that carries the "optimal" prognosis for a stable gender identity and the capacity for full sexual function. Assumptions regarding the optimal care of children with DSD are now being fundamentally challenged both within and outside of the professional community (i.e. clinicians, researchers, social scientists and patient advocacy groups).

Objectives:

  1. Ascertain current opinion and treatment recommendations regarding the clinical management of children born with varying DSD.
  2. Serve the function of characterizing the state of current practice and elucidating clinicians' beliefs and attitudes that support decision-making practices for children diagnoses with a DSD.
  3. Serve as a benchmark to gauge effects of recommended changes in clinical care.

Research Topics & Methods:
Data were collected through an online survey at two points in time: 2003-04 and 2010-11. Participants included key clinical decision makers for this patient population; pediatric endocrinologists and pediatric urologists. The survey comprised several DSD case vignettes for which participants were asked to make recommendations regarding gender assignment, genital surgery and its timing, and disclosure of diagnosis details to the patient and its timing. Participants were also queried regarding factors they believe contribute to positive quality of life outcomes for these affected persons.

Data analyses are ongoing.

For more information, please contact:
David E. Sandberg, PhD
Professor and Director, Division of Child Behavioral Health
Department of Pediatrics and
Child Health Evaluation and Research (CHEAR) Unit
University of Michigan
300 North Ingalls Building, Room 6D18
Ann Arbor, MI 48109-5456
Telephone: (734) 647-8100 Fax (734) 936-6897
Email: dsandber[at]med.umich[dot]edu