AMBIGUOUS
GENITALIA BABIES MOSTLY HAPPY WITH GENDER ASSIGNMENT
Researchers at Johns Hopkins Children's Center report that adults
born with ambiguous genitalia - or malformations that make it difficult
to determine sex of rearing - were generally content with the gender
assigned to them at birth by their parents and doctors. A companion
study showed that almost half of adult intersex patients knew little
about their condition, and would like to know more. The studies,
which appear in the online version of the September issue of Pediatrics,
could help families and doctors make better therapeutic and counseling
decisions about gender assignment, says lead researcher Claude
Migeon, M.D., a pediatric endocrinologist at Johns Hopkins Children's
Center.
Migeon and his colleagues recruited their study subjects from
the archives of the pediatric endocrinology clinic at Johns Hopkins,
where their subspecialty was founded in the mid-1940s. Because
many of the clinic's patients have reached adulthood, researchers
are now able to gauge the outcome of gender assignment choices
made decades ago among what may be the world's largest cohort of
intersex patients. Researchers judged success or of gender assignment
on a variety of psychological, physical and sociological factors.
In the first study, researchers interviewed, reviewed the history
of and examined 39 people 21 years of age or older seen at Hopkins
as infants or children with genital ambiguity. The patients all
had a genetically male, XY genotype and a genetic intersex syndrome
that causes the abnormal formation of an extremely small phallus,
with the urethral opening on the underside, where it would be located
on a female.
Although historically there has been controversy over which is
the best gender assignment for these children, they are often assigned
to female gender by parents and doctors, undergoing surgeries and
hormone treatments, to be reared as girls.
Of the 39 participants in this study, 21 were raised as males
and 18 as females. The majority of men (76 percent) and women (78
percent) were satisfied with their assigned sex of rearing. Two
patients changed gender in adulthood. Most subjects were satisfied
with their body image, sexual functioning with a partner and sexual
orientation, and considered themselves appropriately masculine
or feminine.
"These and earlier studies here suggest that gender assignment
should be based on the type of intersex condition and a thorough
discussion of the risks and benefits of treatment," Migeon
says. The team's previous studies showed that XY individuals born
with normal-appearing female genitalia are more successfully raised
as females, and those born with micropenis are better raised as
males. "For those born with ambiguous genitalia, it is most
important for families to consult closely with pediatric endocrinologists,
urologists and counselors to consider many variables, including
complications and outcomes of genital reconstruction, the need
for long-term sex hormone replacement, and the desire for fertility," Migeon
says.
Results of the second study, which examined intersex patients'
knowledge of their condition, suggest that patients are not receiving
the close counseling with medical professionals which the first
paper finds important.
Seventy-five adult patients, also recruited from the historical
files of the pediatric endocrinology clinic at Johns Hopkins, participated
in the study. All had the XY genotype and an intersex syndrome.
The 34 males and 41 females were asked specific questions to determine
their knowledge about their condition, whether they were satisfied
with their level of understanding, and whether they wanted more
information.
Fifty-three percent of men, and 54 percent of women had a good
understanding of their condition. More women (66 percent) than
men (38 percent) were satisfied with their knowledge. In both groups,
those who were satisfied had a good understanding of their condition.
Less than half of the participants, regardless of gender, expressed
interest in receiving more information.
"If we ran this study again in 50 years, we hope none of
the participants would report a lack of understanding of their
condition," says researcher Amy Wisniewski, Ph.D, of the Children's
Center. "Better knowledge of these conditions will lead to
better treatment."
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