Surgeries on Intersex Infants are Bad Medicine

Surgeries on Intersex Infants are Bad Medicine

Sex, gender, and medical interventions for young people have been widely discussed in state legislatures this year, with a record number of states introducing bills which would limit or prohibit gender-affirming care for transgender youth. Gender-affirming care is supported and recognized as good health care by professional medical organizations and transgender advocates alike. While state lawmakers have rushed to keep transgender youth from receiving care they need, their bills permit non-consensual and harmful surgeries on intersex infants to continue. What lawmakers should be focused on is banning these unnecessary and dangerous medical interventions.

What does it mean to be intersex?

Intersex” is an umbrella term that refers to people with one or more of a range of variations in sex characteristics that fall outside the traditional conceptions of male or female bodies. Some of these differences are apparent at birth while others become noticeable later in life, such as during puberty. While less people tend to have awareness of intersex people and the issues they face, being intersex is actually fairly common; approximately 1-2 percent of the population is intersex, comparable to the percentage of people who are redheads!

There are many possible differences in genitalia, hormones, internal anatomy, or chromosomes which do not fit neatly into the binary sex categories into which people are typically assigned at birth. Intersex conditions include hormone conditions, such as Androgen Insensitivty Syndrome or Congenital Adrenal Hyperplasia, in which the body does not process hormones in the typical way, resulting in differences in the physical development of internal and external sex organs. There are over 40 medical terms of the different ways sex anatomy might develop; importantly though, advocates stress that all children should have bodily autonomy regardless of classification into a specific category.

What are intersex surgeries and why are they harmful?

Intersex surgeries are non-lifesaving procedures that change natural variations in genital appearance or reproductive anatomy. Intersex surgeries include reducing or repositioning a clitoris (which can result in the loss of sexual sensation), creating or altering a vagina, moving a urethra that already works, and removing organs that would make sex hormones (such as gonadectomy, which can result in sterilization).

Rather than being based on medical necessity, the history of intersex surgeries is rooted in heteronormative and patriarchical perspectives about sex, gender, and marriage. Beginning in the mid-twentieth century, doctors began performing surgeries on intersex infants and children to make their genitals appear more “normal.” In addition to having the goal of reinforcing a binary view of sex and gender, the prevailing view among medical practioners was that young people would feel shame over their intersex characteristics and that without surgery they would not be able to have a normal marriage or sex life.

Because of this shame-based view, these  young people, and even their parents, may not be told that they are intersex. It is not uncommon for intersex children not to know they are intersex or to be lied to and told that the surgeries were necessary to prevent cancer, rather than to “normalize” the appearance of their genitalia.

While some intersex conditions can present issues making or regulating hormones or can carry other health risks, for the vast majority of intersex infants, surgical intervention is not medically necessary. Rather, intersex surgeries — most of which are done when children are under 2 years old — can create life-long harms. These surgeries can result in scarring, chronic pain, chronic incontinence, loss of sexual sensation, sterilization, inaccurate gender assignment, and trauma.

Intersex surgeries violate medical ethics and standards of care.

The practice of performing unnecessary surgeries on infants and children is in direct conflict with medical ethics and standards of care. Ethical standards require health providers to allow patients to make decisions about their own health and treatment. But when these life-changing surgeries are performed on children whose average age is 2, there is no way for the intersex person to make their own decisions about a procedure that will affect their fertility, sexual function, and emotional well-being for the rest of their lives. Similarly, the practice of informed consent, wherein providers disclose relevant and medically accurate information about treatment choices and alternatives, is crucial to this decision-making process. But informed consent cannot happen when children and parents who are not told the true reasons for different procedures and, as a result, are denied the opportunity to decline an unwanted surgery.

What can we do to end nonconsensual intersex surgeries?

Intersex advocates, such as  interACT: Advocates for Intersex Youth, the TGI Justice Project, and the Intersex Justice Project, organize to end intersex surgery and hold doctors and hospitals accountable for violating medical ethics and patient autonomy. One avenue to end surgeries is legislative action: five states have introduced bills to prohibit intersex surgery, but none have passed yet. For example, California Senator Scott Weiner introduced California Senate Bill 225 (the “Bodily Autonomy, Dignity and Choice Act”) which would have prohibited physicians and surgeons from performing certain sex organ modification procedures on intersex children under age 12. While that bill will now not be considered until next year, it has raised awareness of the need to address this harmful practice.

Further, prohibiting insurance coverage of surgeries on intersex youth should be considered to limit this practice. While we know that many transgender individuals face barriers getting insurance programs to cover their medically-necessary and ethically sound gender-affirming surgical care, surgeries without the specific consent of the intersex youth are often covered by insurance. Insurance coverage is often available because these surgeries are deemed “reconstructive” or “corrective,” but this determination is left to physicians, not intersex people or their families, despite the fact that intersex surgeries are not needed to “correct” a medical issue.

Intersex activists have lobbied hospitals directly to stop intersex surgeries from being performed in their facilities. In a first-of-its-kind victory for the movement, in July 2020 the Ann & Robert H. Lurie Children’s Hospital of Chicago announced it would no longer perform surgeries on intersex infants who are unable to consent and apologized to the intersex people who had been harmed by its sex development clinic. Similarly, in October 2020, Boston Children’s Hospital announced they would stop performing two types of intersex surgery (clitoroplasty or vaginoplasty) on children too young to consent. Activists continue to advocate for other hospitals to stop intersex surgeries, and in 2018 released the nation’s first intersex-affirming hospital policy guide, which calls for the creation of clear policy that encourages the delay of any surgical procedures until an intersex individual is old enough to make an informed decision.

Intersex people, like all patients, have the right to be informed of their treatment options and associated risks, to determine their own course of treatment, and to be protected from harmful and unnecessary procedures. Performing unnecessary surgeries on intersex infants fails to live up to medical ethics and violates the bodily autonomy of intersex people. Lawmakers and advocates should work to enact protections to ensure that performing such surgeries on young children are banned.

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