“I think these conditions get stigmatized and compartmentalized because they’re sexual,” says psychiatrist Vernon Rosario, PhD ’93 MD ’95. What’s the best way to work with families to assign the “right” sex when babies are born with diverse genital presentations? When and how should health care teams recommend intervening? How do providers act responsibly without a definite diagnosis or long-term outcome data? How to balance safety with patient autonomy? How to uncouple medical necessity from societal pressures that call for people to conform to a sex binary? Throw in conflicting pressures from professional, patient advocacy, and human rights groups, and the waters grow ever muddier.Ĭlinical and bioethical questions abound. The relative rarity of cases, combined with anemic material in medical school curricula and significant research gaps, leaves many physicians, surgeons, mental health specialists, and others struggling to understand how best to care for these underserved people. For comparison, Down syndrome occurs in 1 in 800 births. Estimates of incidence range from more than 1 in 100 to less than 1 in 5,000 births, suggesting a prevalence between 66,000 and 3.3 million people in the United States. It isn’t clear how common DSDs are, in part because they encompass some forty to sixty conditions with an even greater number of causes. Such questions have fueled disagreement over whether to refer to atypical sex characteristics as “disorders of sex development,” or DSDs, as they’ve been classified by the medical profession since 2006 as “differences of” or “diverse” sex development to avoid pathologizing language as intersex traits or variations in sex characteristics or to abandon umbrella categories and use only the names of specific conditions.

Since the 1990s, when patient advocacy groups gained a national platform, debates have churned about which differences indicate pathology and which represent a spectrum of human sex characteristics that deserve acceptance. In many cases, the physical and psychological risks are uncertain. A minority are accompanied by significant, even life-threatening, medical concerns. An ultrasound reveals that a previously undetected uterus has shed its lining through the urethra: he’s experiencing his first period.Įach year, a portion of the population is born with biological characteristics-sex chromosomes, gonads, genitalia, hormones, or a combination-that don’t fit textbook definitions of male or female. An exam for a suspected inguinal hernia instead finds a pair of undescended testes.Ī teen raised as a male comes to the doctor bleeding from his penis.

The labia are partially fused so that they resemble a scrotum.Ī young girl complains of abdominal tenderness.

Celebrating 50 Years of Diversity and InclusionĪn otherwise healthy baby is born with a phallus that seems small for a penis but big for a clitoris.

Research Departments, Centers, Initiatives and more.

Diamond d grown men talk rarity