Policymakers consider intersex surgical standards

Proposals to regulate treatment of sex development differences threaten to further confuse patients and physicians. Too often, urologists fail to make their voices heard when policymakers consider instituting intersex surgical standards. A lone voice in Nevada hopes to add nuance to legislation governing a child's consent.

As indicated by a dialogue taking place at UrologyTimes.com following the July 5, 2016, publication of an awareness-raising post entitled, The transgender community: Urology has a role and responsibility, physicians might well-benefit from continuing education on distinctions between differences of sex development (DSD) and gender dysphoria. Responding to the online publication, a concerned grandmother pointed out that associating congenital adrenal hyperplasia (CAH) with "bathroom bill" controversies overstates any connection between an inherited condition and one's psychological understanding of their gender identity. In fact, CAH patients and all other intersex people identify as transgendered or transsexual at the same rate as the non-DSD population, according to the Intersex Society of North America.

Bills prohibiting surgery on minors with intersex traits (2017)

Indiana

House Bill 1461

Nevada

Senate Bill 408

Texas

Senate Bill 1342

Organizations that promote national medical policy standards and lawmakers in several states (Texas, Indiana, Nevada) have recently considered proposals that would direct scrutiny upon surgical procedures undertaken in infancy to assign or confirm gender.

The AMA House of Delegates took up a 2016 resolution proposed by the progressive Medical Student Section, which asked:

That our AMA affirm that medically unnecessary surgeries in individuals born with differences of sex development are unethical and should be avoided until the patient can actively participate in decision-making.

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At its June 2016 meeting, the House of Delegates referred the resolution to the Board of Trustees, which issued its own report later in the year. That report was temporarily shelved after receiving divergent testimony regarding unintended consequences, "particularly around interventions that may be clinically necessary but not life-threatening or emergent." Delegates noted that when this report is reconsidered, "the recommendations should be developed in collaboration with experts in pediatric endocrinology, urology, psychiatry, and law."

Unfortunately, that kind of collaboration is being rejected by proponents of a bill progressing through the Nevada Legislature. Senate Bill 408 prohibits any surgery to assign anatomic sex of a child, including relocation of the urethral meatus, unless he/she is capable of assenting to the procedure. An exception may be made if the provider determines that delaying the procedure is likely to endanger the child's life, but the bill includes no other nuance. The broad measure essentially legislates a definitive DSD standard of care unless/until lawmakers come together to amend the law.

Next: "This is a complicated area of medicine that is undergoing rapid re-evaluation."

"While good intentioned, this law would disrupt individual treatment options and infringe upon the doctor-patient relationship," according to AACU President Elect Patrick McKenna, MD, who continued, "This is a complicated area of medicine that is undergoing rapid re-evaluation."

Pediatric urologist Clare E. Close, MD, testified that, "Only some patients with atypical anatomic genitalia are of questionable gender," and the proposal "could prohibit hypospadias repairs that are considered standard of care in an otherwise [typical male infant]." In rare cases when the evaluation of anatomic features, chromosomes, and gonadal tissue render an infant's sex is truly indeterminate, Dr. Close explained that a multidisciplinary panel composed of a pediatric endocrinologist, geneticist, urologist, psychologist, and ethicist convenes immediately to collectively consider the case.

Dr. McKenna added, "The complexity is so great that this multidisciplinary team approach deals with each case as a unique individual, taking into account a long-range developmental view, respecting the rights of parents to represent their child and understanding in that atmosphere we need to do our best where a perfect decision may not be guaranteed."

Despite reasonable concerns and offers from the Nevada State Medical Association to connect supporters to relevant specialists who might improve the legislation, senators narrowly approved the bill in its original form.

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The AACU will continue to press for changes to this legislation as it winds its way through the state Assembly, relying on medical facts as well as psychological studies that find most persons born with intersex conditions are just as happy with their assigned sex as persons born with typical sex characteristics. Indeed, a soon-to-be-published paper from the Riley Hospital for Children at Indiana University Health will report that decisional regret among parents who consented to surgical intervention for CAH at infancy is far lower than regret among parents who consented to treatment for other disease states.

Urologists play a vital role in the treatment paradigm for intersex children and must contribute their expertise to improve policies addressing whether surgical intervention, in select cases, may improve patients' happiness and comfort. 

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