In this context, we are referring to surgical procedures on intersex children that are performed absent pressing medical need. Some intersex infants are subjected to surgeries intended to “normalize” their bodies with no opportunity to participate in decision-making. These surgeries may be designed to assign a sex to the child and/or make the child conform to gender and sexual norms. These procedures include, but are not limited to, clitoral surgeries (which may be referred to as clitoroplasties, clitoral reductions, or clitoral recessions), vaginoplasties, and gonadectomies.

Note that while some of these procedures have the same names as surgeries that are offered as part of gender-affirming care for transgender patients, they are not the same. Transgender people actively seek out care, while intersex individuals do not have a say in what procedures are performed as most interventions occur before an individual is old enough to be able to participate.

Documented consequences of nonconsensually operating on intersex children include chronic pain, nerve damage, urinary incontinence, scarring, loss of future sexual function, sterilization, PTSD, and an increased risk of suicide. In addition, infant surgery that enforces sex stereotypes associated with one gender category can be especially harmful when the individual grows up to identify with a different gender (which is the case for an estimated 10% to 60% of intersex people). These injuries are often irreversible once unwanted surgery has been performed, but they are also avoidable—by delaying decisions about non-urgent procedures until intersex individuals can weigh options, risks, and benefits for themselves, as is modeled by existing affirming care standards for transgender patients.

Despite being relatively common, “intersex” is still an unfamiliar term to many and in fact, many intersex people may not even be aware of their own variations in sex characteristics until much later in childhood, adolescence, or even adulthood. The misguided desire to “protect” intersex youth from the supposed harm of growing up with a noticeable difference perpetuates shame and stigma. Discrimination based on bodily difference, shared by many other inividuals in sexual and gender minority communities, can be especially severe for intersex youth who are also transgender, non-binary, or gender-nonconforming. (Note that being intersex does not inherently make someone trangender or non-binary: while some intersex people are transgender, many others do identify with the sex with which they were raised, and most intersex people identify as either male or female.)

Performing interventions like clitoral surgeries, vaginoplasties, and gonadectomies without the consent of the individual has been deemed a form of torture by the United Nations, opposed by every human rights organization to have considered the issue, outlawed in several countries, and condemned by every intersex-led organization of which we are aware. Medical associations including the Massachusetts Medical Society, Michigan State Medical Society, GLMA: Health Professionals Advancing LGBTQ Equality, the American Academy of Family Physicians, and the American Counseling Association have issued policies or statements calling for the delay of medically unnecessary procedures on intersex children to protect their autonomy and well-being.

Your response would be “No.”

However, we would accept a policy that indicates that your hospital does not perform these types of procedures AND does not provide referrals to other providers and/or hospitals that do offer medically unnecessary surgeries on intersex children. Instead of offering referrals for surgery, we would encourage you to share educational resources with the parents of intersex children on the dangers of these types of procedures and the benefits of waiting until their child can make an informed decision.

Step 1. Determine whether this question applies to you.

• If your facility sees only adult patients (offering no pediatric care whatsoever), then answer “N/A.”

• If your facility does not offer any surgical procedures, then answer "N/A."

• Facilities that treat pediatric patients will answer either “Yes” or “No,” even if intersex children are referred out to other providers or specialty centers (see the previous question for more guidance). Proceed through the next steps below.

Step 2. Determine who cares for intersex children at your facility.

Some teams may use terms like “Differences” or “Disorders” of Sex Development instead of intersex to refer to the approximately 1.7% of the population born with variations in sex characteristics—including genitals, gonads, chromosomes, and hormonal factors—that transcend typical notions of male and female bodies. Sometimes intersex traits are identified in utero through prenatal testing, sometimes at birth through visible genital differences, and other times not until later in childhood, at puberty, or even in adulthood. When a child’s intersex traits are discovered, pediatric urologists, pediatric endocrinologists, and pediatric gynecologists are the most common subspecialties to be tasked with their care. Your facility may also have a specialized program or “multidisciplinary team” that jointly treats intersex patients.

Step 3. Check with the relevant departments to find out if an official policy exists regarding the care of intersex children.

• If there is no policy, answer "No" and skip to Step 4

• If there is a policy, determine whether it qualifies for the purposes of the HEI. In order for a policy to meet our criteria, it must explicitly prohibit medically unnecessary surgical interventions on the genitals, gonads, and other reproductive organs of children born with variations in sex characteristics (whether referred to as intersex or not) until the individual is able to participate in decisionmaking and provide informed assent/consent. At a minimum, this means the individual is able to consult with physicians and mental health professionals about the risks and benefits of any procedure. The patient must be able to meaningfully comprehend the function of their genitals and reproductive organs and to hold a meaningful conversation about surgical and non-surgical options, including the potential risks and benefits of any procedure under consideration and how the implications of undergoing, postponing, or forgoing surgery relate to their individual priorities and wishes for their own body.
• If your facility does not operate on intersex children but refers them out to other hospitals or providers for specialized care, to meet the HEI standard, your policy must both state that surgeries are not performed on intersex children at your facility and must also prohibit the referral of intersex children to hospitals or providers who do perform medically unnecessary surgeries without the informed consent/assent of the individual.

• If your facility’s policy meets the criteria outlined above, you may answer “Yes.” You must provide a copy of the policy along with your survey responses. We advise completing Step 4 as well to ensure that the care being offered at your facility matches the written policy.

Step 4. Determine what current practices are followed in the care of intersex children at your facility.

In the past, it was commonly believed that immediate surgery was necessary to “normalize” intersex children’s bodies, but now best practice is to defer surgical decision-making until the individual is able to decide for themself what their reproductive and sexual needs may be.

• Begin by asking the subspecialists at your facility who are most commonly involved with intersex children’s care (pediatric urology, pediatric endocrinology, and pediatric gynecology) how intersex patient care proceeds. Ask which types of surgeries are performed, how often, and how these decisions are made. If mental health professionals or patient advocates are said to be involved in the process, ask them about their roles and observations as well.

• Confirm current practices by referring to billing data for procedures performed at your facility. Here is a list of common procedure codes that may be used to document surgeries on intersex children.

• While there are circumstances under which the listed procedures may be performed without violating an HEI-compliant intersex policy (such as if the procedure is performed at the request of a consenting intersex individual or as part of gender-affirming care, or if the procedure is otherwise medically necessary and cannot be safely deferred until individual consent is possible), reviewing your facility’s data can indicate whether closer monitoring is warranted to ensure the official policy is being followed.

Step 5. Advocate for the adoption of a qualifying and affirming policy. The Human Rights Campaign and interACT: Advocates for Intersex Youth are available to consult on policy language and implementation, as well as answer other questions that may arise.