Turks Head Surgery Center, where urologist Dr. Ilene Wong spoke to Human Rights Watch about shortcomings in providing care to patients with differences in sex development (DSD) and their families. The North American Society for Pediatric and Adolescent Gynecology also expressed concern about DSD care in a new position statement released in November 2017. 

©2017 Human Rights Watch.

(New York, November 8, 2017) – A new position statement by the North American Society for Pediatric and Adolescent Gynecology represents a significant step toward ending medically unnecessary surgery on intersex children who are too young to consent, Human Rights Watch and interACT Advocates for Intersex Youth said today. The statement urged respect for the autonomy of intersex children and for their active participation in decisions about surgical procedures. The statement was endorsed by the Pediatric Endocrine Society, another major medical professional association. 

Since the 1960s, doctors in the United States and around the world have routinely performed surgery on intersex infants and children – born with chromosomes, gonads, or genitalia that do not correspond to traditional notions of “male” or “female” – to assign them a sex or “normalize” their bodies. These surgeries on children with intersex traits (sometimes called Differences of Sex Development or DSD) are medically unnecessary, irreversible, often traumatizing, and carry a risk of lifelong harm.

“Endocrinologists and gynecologists are critical to intersex health care, and their support for an end to unnecessary and high-risk surgery on children too young to consent is a major step,” said Kimberly Zieselman, executive director of interACT. “These children and their families need psycho-social and peer support, and lifelong expert health care – not early unnecessary surgeries that irrevocably impact their sexual and reproductive function.”

The position statement reads:

We believe in respecting the autonomy of the individual patient as well as providing ample support and guidance for the patient and family. All parents and affected patients should be actively encouraged to seek psychological counseling and peer support given the stress, confusion, and isolation that many experience. We believe that surgery alone does not address all the implications associated with DSD conditions. Some DSD conditions require early surgical intervention to optimize health and fertility. Ideally, if surgical interventions could be safely delayed, patients would have time to express their gender identity and to be actively involved in the decision making process. True informed consent or assent includes an accurate discussion of the options, benefits, known short and long term complications, expected pain and recovery, as well as need for reoperation. Finally, we believe that if there is a possibility for fertility, that this should be preserved and optimized.

Despite decades of controversy, doctors in the US and around the world continue to operate on intersex children’s gonads, internal sex organs, and genitals when the children are too young to participate in the decision. The results are often catastrophic and the supposed benefits largely unproven. While certain surgical interventions on intersex children are undisputedly medically necessary, some surgeons perform risky and medically unnecessary cosmetic surgery on intersex children, often before they are even able to talk.

Medical protocols have evolved over the past two decades. The use of multi-disciplinary teams, including endocrinologists, gynecologists, urologists, and psychologists to work on intersex (or DSD) cases is increasingly common. However, the field remains fraught with uneven, inadequate, and piecemeal standards of care. The position statement from the North American Society for Pediatric and Adolescent Gynecology and the support from the Pediatric Endocrine Society is an important standard-setting step, Human Rights Watch and interACT said.

Medically unnecessary surgery on intersex children has been condemned by the World Health Organization, the American Medical Association board of trustees, three former US surgeons-general (including one who was a pediatric endocrinologist), Physicians for Human Rights, the AIS-DSD Support Group (the largest US community support group for people and families affected by intersex conditions), Amnesty International, United Nations experts on children’s, disability, women’s, and health rights, Lambda Legal, the ACLU LGBT Rights Project, Human Rights Watch, and intersex-led organizations around the world.

“Clear support for shared decision-making about surgery between doctors and intersex people themselves, as these two top pediatric medical associations have now endorsed, is the path forward for modern medicine,” said Kyle Knight, researcher at Human Rights Watch. “Deferring medically unnecessary surgery, as recommended by every human rights organization to have considered this issue, should be the norm rather than the exception for intersex children.”