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Study recommends that parents, physicians share decisions in sex development disorder surgery
Date:7/23/2010

s the author of a book on disorders of sex development called "Fixing Sex: Intersex, Medical Authority and Lived Experience." "But, every day, physicians are seeing patients in the clinic and parents are struggling to make decisions about the best way to care for them."

Disorders of sex development, or differentiation, refer to congenital conditions in which the development of chromosomal, gonadal or anatomical sex is atypical. The disorders include a broad range of conditions such as ones in which infants are born with genitalia having both masculine and feminine attributes, and infants whose genitalia is atypical for their sex because it is over-masculinzed for a female or else under-masculinized for a male.

Karzakis said that the overall incidence of disorders of sex development is estimated at 1 in 2,000. But approximately 70 percent of patients experience a family of disorders called congenital adrenal hyperplasia. Most of the conditions involve excessive or deficient production of sex steroids and can alter development of primary or secondary sex characteristics.

Numerous health-care organizations including the Institute of Medicine and American College of Physicians have suggested that there is a need for a clearly defined process for medical decision making. The authors have applied this recommendation to the process for considering elective genital surgery, or genitoplasty, for children born with atypical sex development. In the past, such decisions have been driven by physicians' and parents' personal values and "gut feelings," often with less-than-optimal outcomes, the study says. Health-care providers often report feeling conflicted about whether they have made the right recommendations to families, and parents report feeling rushed into decision making. The researchers said that shared decision making would require clinical caregivers to reveal their reasoning, values and biases and explore their patients' or their surrogat
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Contact: Phyllis Brown
phyllis.brown@ucdmc.ucdavis.edu
916-734-9023
University of California - Davis - Health System
Source:Eurekalert

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