What is the fate of children born with gender ambiguity in Uzbekistan? Interview with a medical expert

The recent decision by the Cabinet of Ministers allowing citizens who have changed their gender to also change their names and surnames has sparked widespread discussion. The public took the news seriously, with various interpretations circulating on social media, such as: “Changing gender is now permitted...” and “Anyone who changes their gender can now also change their surname, first name, and patronymic.” Following this, the Ministry of Justice issued an official clarification.

According to the law, when registering a child’s birth, their gender is recorded based on a medical certificate issued by a healthcare institution. However, each year in Uzbekistan, an average of 5–6 children are born with indeterminate gender. In such cases, initial examinations may classify the newborn as “boy” or “girl,” but later, when the child reaches the age of 5–10, or in some cases 10–16, it may be determined that the initial classification was incorrect. For example, a child initially registered as a boy may be a girl, or vice versa. The government’s resolution is intended to address precisely such cases.

QALAMPIR.UZ spoke with Alisher Sultanov, Head of the Department of Pediatric Urology at the Republican Specialized Pediatric Scientific and Practical Medical Center, to understand what gender ambiguity is, how it is treated in Uzbekistan, and what challenges patients and families face.

Iqbol Ergashova, correspondent: — What is congenital gender ambiguity? Can you provide information about cases where the external and internal genitalia differ in structure?

Alisher Sultanov, pediatric urologist: — Disorders of Sexual Development (DSD) are a group of congenital conditions in which the development of the genitals (gonads, internal and external structures) does not conform to typical male or female characteristics. These disorders can be caused by genetic, hormonal, or embryological factors and may result in atypical genital structures, delayed puberty, or infertility.

Reporter: — What urological procedures are performed for children born with gender ambiguity?

Doctor: — These cases require genetic testing (such as karyotyping or next-generation sequencing), ultrasound examinations, and hormonal analysis.

First, it is necessary to determine the genetic sex (karyotype), such as 46,XY or 46,XX. However, this may not match:

•  Gonadal sex (presence of ovaries or testicles);
• Phenotypic sex (external genital appearance);
•  Psychological gender (how the person self-identifies).
• 

Reporter: — When is surgical intervention recommended, and what clinical criteria are considered?

Doctor: — Treatment may include surgical correction, hormone therapy, and psychological support. A multidisciplinary approach is essential, involving geneticists, endocrinologists, surgeons, and psychologists. It is best to perform surgical correction before the child becomes conscious of their gender.

Reporter: — If the child’s gender is incorrectly determined in early childhood, how might this affect their future?

Doctor: — It can lead to depression, psychological trauma, and even suicidal thoughts later in life.

Reporter: — There is talk of an increase in gender incongruence diagnoses in recent years. How frequently do you see such cases?

Doctor: — This increase is due to better diagnostics and wider access to information. At our pediatric center, we treat and perform surgery on 2–3 such cases per year.

Reporter: — What is the situation for people born with these conditions in Uzbekistan? Are there challenges with treatment, surgery, or legal documentation?

Doctor: — Unfortunately, families often avoid seeking timely care due to embarrassment or stigma. Some come forward only at the age of 16–18. After successful surgery, we facilitate a legal change in the child’s birth certificate. To minimize social pressure and gossip, we also recommend that families consider changing their place of residence.

This condition is classified internationally under “Indeterminate sex and pseudohermaphroditism” (Q56). Specific subcategories include:

•  Female pseudohermaphroditism with adrenal disorders (E25.-)
•  Male pseudohermaphroditism with androgen resistance (E34.5)
• Cases with chromosomal abnormalities (Q96–Q99)

Complications can be prevented with early intervention. Therefore, if any family encounters such a condition, I urge them to seek medical help without delay.