Ensuring compassionate and ethical care of intersex patients

By Naveed Saleh, MD, MS | Fact-checked by Barbara Bekiesz
Published October 25, 2023

Key Takeaways

  • Non-consensual care of intersex patients is a human rights violation, yet continues in the United States and elsewhere.

  • ‘Binary bias’ results in the marginalization of intersex people, and can lead to feelings of shame relating to their body. 

  • Genitoplasty should not be performed at birth and instead deferred until the patient has insight into their condition and is able to provide true consent.

International experts agree that non-consensual care in intersex patients should be forbidden. Currently, the treatment of intersex persons in the United States is directed by clinical wisdom and non-legally binding guidelines.

Despite the need for physicians to respect and advocate for the human rights of all patients, expert opinion among American physicians on intersex patients is unsettled. 

The binary bias

According to the National LGBT Health Education Center, most people perceive sex as being either “female” or “male.”[] Nevertheless, between 0.5% and 2.0% of the population is intersex. 

Intersex refers to bodies that exhibit a wide gamut of sex and development characteristics that may not align with conventional expectations about female or male bodies. Variations can involve the internal or external reproductive organs, chromosomal differences, and variations in hormone production/effects. 

More common intersex conditions include complete androgen insensitivity syndrome (CAIS), gonadal dysgenesis, congenital adrenal hyperplasia (CAH), and Klinefelter syndrome (47XXY or variants).

Importantly, the term intersex differs from transgender in that transgender refers to a gender that differs from the sex assigned at birth based on anatomy. Intersex is an umbrella term that refers to variations in sex characteristics that result in a person not fitting within the two most common trajectories of human sex development.

The “binary bias” results in intersex people feeling isolated and ashamed of their bodies.

Human rights considerations

When international standards on human rights are considered, the current care of intersex patients in the United States is inhumane. 

“Although human rights principles have been referenced when arguing in favour of change, the rhetorical use of language privileges medical opinion rather than human rights enforced by law. At the moment, such opinion favours ‘evidence’ and ‘prospective collaborative studies’ before eliminating the clinical practice of intersex genital surgeries, which ignores human rights principles,” wrote the authors of a review published in Global Public Health.[]

Recommendations in the United States are rooted in intersex clinical treatments during infancy or early childhood. The human rights argument to guarantee intersex care in the United States has not been effective, partially due to state and federal policies that do not align with international and regional treaties on the rights to sexuality and sexual health, as well as those of children.

True informed consent

Parents play a crucial role in the therapy for children born with intersex variations, or differences in sex development (DSD), according to authors of an article in the AMA Journal of Ethics.[] Shared decision-making is the current standard of care, although criticisms of this approach stress gaps in parental knowledge that hinder parents’ perceived and actual participation.

True informed consent requires an increased emphasis on the clinician’s responsibility to protect the child’s autonomy during decision-making. This responsibility includes describing new outcomes data and discussion of the organizations and legislative initiatives that have called for the deferral of surgical intervention.

“Medical experts and patient advocates alike continue to call for more research to determine the optimal treatment for children born with DSD,” the AMA authors said.

"Meanwhile, reports of suffering by those in the intersex community continue to be devalued, as such anecdotal reports do not take the form of privileged evidence."

Authors, AMA Journal of Ethics

They added, “We call on clinicians to heed these repetitive calls to action and to recognize that when an individual is born with atypical genitalia that poses no physical risk, treatment should focus not on surgical intervention but on psychosocial and educational support for the family and child. Cosmetic genitoplasty should be deferred until children are old enough to voice their own views and meaningfully assent to undergoing surgery.”

What this means for you

The binary bias is rampant in medicine and especially apparent at the birth of an intersex child. There is a long history of the concerns of intersex patients being neglected or devalued. When a person is born intersex and delaying surgery will not be harmful to their health, treatment should revolve around education and psychosocial support. Genitoplasty should be deferred until the patient can express their own preferences and consent.

Read Next: The ongoing struggle for transgender inclusion in clinical trials

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