Tamil Nadu's intersex care gap: Basic genetic tests missing at most government hospitals
Nearly seven years after Tamil Nadu became the first State to ban sex-reassignment surgeries on intersex infants, doctors and activists say the healthcare system still lacks the genetic testing infrastructure needed to properly diagnose and manage variations in sex development. While the 2019 government order protects children from irreversible procedures, the absence of basic tests in most public hospitals leaves families and clinicians without critical answers.
Sex-reassignment surgeries, also called “genital-normalising” procedures, are invasive and often unnecessary interventions performed on infants with intersex traits or differences of sex development (DSD). The Madras High Court, in 2019, prompted the State government to issue a G.O. banning such surgeries unless the condition is life-threatening. A multidisciplinary panel—comprising a paediatric surgeon or urologist, endocrinologist, social worker, psychologist or intersex activist, and a government representative—must now determine whether surgery is warranted.
The challenge, however, extends beyond policy. Many DSDs require genetic investigation soon after birth to guide treatment and avoid harmful decisions. One essential test is karyotyping, which analyses the number, size, and shape of chromosomes. It provides a preliminary confirmation of an infant’s chromosomal pattern, such as XX, XY, or mixed types. Yet, this basic test is not available in most government hospitals in Tamil Nadu and must be outsourced to private laboratories.
A senior doctor at Government Rajaji Hospital in Madurai, who works with intersex infants, told The Hindu that the hospital receives one to two such cases every month. Surgical correction is performed only where absolutely required, such as in congenital adrenal hyperplasia (CAH), a condition that can cause dangerous salt and fluid loss in newborns. The doctor stressed that better karyotyping and genetic testing facilities would significantly improve diagnostic accuracy and management, and help avoid inadvertent or irreversible gonad removal in intersex children.
Of the 38 medical college hospitals in Tamil Nadu, only one—the Institute of Child Health (ICH) in Egmore, Chennai—has a dedicated genetic department. “Before we can even get into complex genetic testing, we do not even have basic karyotyping facilities. We currently outsource it to private labs,” the doctor said. Beyond karyotyping, advanced tests such as next-generation sequencing (NGS) could offer a deeper understanding of DSDs, but these are also largely unavailable in the public sector.
Experts argue that infrastructure alone is not enough. The State needs trained personnel to perform and interpret genetic tests. Outsourcing to private labs also imposes a financial burden on families: a genetic test can cost between ₹8,000 and ₹10,000, while a karyotype test ranges from ₹1,500 to ₹2,500.
M. Kathirvel, a clinical geneticist at Apollo Hospitals, Chennai, suggested that Tamil Nadu should strengthen ICH, Egmore—already a designated Centre of Excellence for Rare Diseases—and establish at least two additional centres of excellence for genetics with comprehensive in-house genomic testing facilities. Such steps, he argued, would ensure that intersex children receive timely and accurate diagnoses, and that their rights to bodily autonomy are upheld with the best available medical evidence.
The State’s progressive legal framework has set a national example. However, turning that framework into real-world care requires investment in genetic medicine, human resources, and accessible testing—so that every intersex child in Tamil Nadu can benefit from both protection and proper healthcare.
