The Negotiation of Bodies: Patient-centered Care in the Clinical Management of Genital Ambiguity

• In Event: 2184 - Section on Medical Sociology Refereed Roundtable Session
  In Refereed Roundtable 60min: Table 09. Treatment Adherence and Navigating Care

Abstract

For decades, the medical practices for treating genital ambiguity involved surgically altering newborns' atypical genitalia shortly after childbirth to conform to the assigned gender. These practices became contentious during the 1990s, when activists accused clinicians of conducting surgeries without evidence of medical necessity. Current medical protocols concerning the management of genital ambiguity now encourage family participation in the decision-making process for gender assignment and treatment. Drawing from in-depth interviews with thirteen families of children with genital ambiguity and twelve medical experts, I examine how parents make decisions about their child’s gender assignment and negotiate treatment procedures with clinicians under the current guidelines. I additionally explore how clinicians provide diagnosis, gender assignment recommendations, and treatment options for children with atypical genitalia. The data suggests that patient-centered care procedures, in the case of genital ambiguity, may increase the anxieties of parents. Additionally, the heterogeneity that characterizes the multiple cases of genital ambiguity makes a patient-centered care model difficult to conceive.

Author

• Eduardo Duran, University of California-Los Angeles