F1000 Commentary: Treatment of adults with complications from previous hypospadias surgery / What is useful about the terminology of DSD? What is unhelpful?

Before coming to a consensus to use the umbrella term “disorders of sex development” (DSD) in 2006, clinicians sometimes used older umbrella terminology, including the terms “pseudo-hermaphroditism,” “true hermaphroditism,” and “intersex.” Some patients found these older terms to be so stigmatizing that they were unable to talk about their conditions, and this left them unnecessarily isolated and ashamed. Some clinicians even withheld diagnoses from affected individuals because they were afraid that the labels of “hermaphroditism” or “intersex” might have a negative emotional and/or social impact on these individuals and their families.

When clinicians came to a consensus to use the new term DSD, they did so in part out of this recognition of harm to patients, but also out of recognition that the definitions of various medical terms based on “hermaphrodite” were many years out of date in terms of scientific advances. They also recognized that “intersex” did not in practice function as a useful umbrella alternative because clinicians could not agree on what counted as “intersex.”

Another problem that these older terms presented was that they seemed to imply a specific type of identity (as in “she is a pseudo-hermpahrodite” or “he is intersex”) when, in fact, often the condition did not form a critical aspect of a patient’s identity. By contrast to these older terms, the term DSD refers to a condition that a person has, not who a person is. It seeks to put the person first.

Today, there is clear medical consensus that the term DSD refers to “congenital conditions in which development of chromosomal, gonadal, or anatomic sex is atypical.” This consensus around terminology is allowing clinicians to work together towards well-integrated, progressive, patient-centered care across the DSD spectrum.

The term “disorders of sex development” can be unhelpful, if someone believes the term means an affected individual’s worth is necessarily less than another person’s. Remember that DSD refers to a condition someone is born with, not who she or he is as a person. Again, DSD is a blanket term that simply indicates a variation from the statistical norm where sex development is concerned.

The term DSD can also be unhelpful if a person mistakenly believes that the term somehow indicates a specific course of action. In order to determine what (if any) medical interventions or social support an affected individual needs to be well, affected individuals and their caregivers must consider that individual’s specific condition and situation. DSD is a general diagnosis, not a specific treatment plan.

Posted in: Terminology and Frequency

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