Who should decide whether medical intervention on a child’s body is necessary? Ideally, the person who will undergo the treatment should have a say in these decisions. Patients themselves, even if they are children, should understand all their options and assent to whatever procedures are on the table. Technically, parents are the ones providing consent for children, but they too need to be informed, especially when particular interventions are controversial and when their timing is debated.
There are two types of legislative initiatives circulating right now that threaten to circumvent informed consent, a fundamental principle of medical ethics. These bills are popping up in states across the country and are worth close attention. Though they both concern minors, their intentions — and their consequences — couldn’t contrast more.
The first kind of legislation aims to abolish access to gender affirming health care for transgender youth. South Dakota House Bill 1057, sponsored by Representative Fred Deutsch (R), passed in that state’s Republican-dominated House but was defeated in the Senate in mid-February. Similar bills have been introduced in Colorado, Florida, Kentucky, Mississippi, Oklahoma, and South Carolina. The bill would have made it a misdemeanor for doctors to provide puberty blockers, hormones, or other gender-affirming treatments for children younger than 16 years old.
Puberty blockers, in particular, work better when they’re started before puberty, so that the child can delay the pubertal and permanent biological changes that they ultimately want to reject. The goal of the South Dakota bill, in essence, was to prevent trans kids from identifying as any gender other than the one they were assigned at birth. It contradicted much recent research about transgender children, which found that they are happier and healthier after taking steps to socially and medically transition. Though Deutsch contended that hormone treatment and gender affirmation surgery should be considered “criminal acts” that are “deeply harmful,” opponents of the bill, including some Republicans, disagreed, citing the clear physical, psychological, and emotional benefits of allowing trans children to express themselves in the gender they feel comfortable.
The second kind of legislation, California’s SB 201 for example, attempts to protect children born with intersex traits (atypical genital anatomies) from unnecessary and irreversible medical intervention. Since the early nineteenth century, but especially since the 1950s, intersex management in the United States has focused on erasing difference and promoting heterosexuality. Many intersex conditions are not as rare as one might expect, nor should they be considered abnormal or physically dangerous. And yet physicians have performed surgeries on children designed to ease parental anxieties about their children’s normality or how they will “fit in.” Infants born with clitorises considered “too large” have been subjected to clitoral reduction, for example, a procedure that seeks to “normalize” their genitals but can lead to scarring and reduced sexual sensation. Yet other babies, often younger than 2 years old, have endured vaginoplasties to accommodate future heterosexual penetration, surely a surgery that can wait at least until puberty and might not be necessary at all. Some children with genital anomalies have had repeated surgeries to allow them to urinate standing rather than sitting.
Many argue that “reparative” surgeries on intersex children often do more harm than good and thus some physicians and intersex advocates support regulating them. California SB 201, sponsored by Senator Scott Wiener (D), sought to prevent physicians from modifying children’s atypical genitals at birth and to postpone these sorts of decisions until the children are older. Though the bill failed, other states, including New York, are crafting similar protective legislation. Bioethicists and intersex advocates, in addition to human rights organizations such as Human Rights Watch and the World Health Organization, have come out against early nonconsensual infant surgeries. Only truly medically necessary surgery should be permitted on young children. If a procedure is not essential, it should be left to children, teens, or young adults, in consultation with parents and medical experts, to make their own decisions about how they want their bodies to look and function.
Here’s where things get tricky: the South Dakota anti-trans bill exempted intersex children from its prohibitions. That legislation specifically said that it’s OK for doctors to continue their medical interventions on intersex children, those with a medically-verifiable genetic disorder of sex development.” (Note the bias of the terminology itself, with its needlessly scary designation of intersex conditions as “disorders.”) Ironically, this bill deemed it reasonable to subject intersex children to the same hormones and surgeries that transgender children are denied, all in the service of creating “normal” bodies and supposedly “protecting kids from harm.” The legislation’s exemption — its essential endorsement — of intersex genital surgeries betrayed the lawmakers’ medical ignorance and their commitment to regulating bodies and imposing so-called “normal” sex and gender binaries.
In the process, legislators in South Dakota and elsewhere undermined the basic principle of informed consent. In thinking through the complex questions surrounding transgender and intersex issues, it is essential that we involve children in the decision-making that fundamentally affects their developing bodies, gender, and sexuality.
Many conversations among affected children, their parents, physicians, and therapists should accompany decisions about surgical and medical intervention. It does not make sense to preclude transgender youth from expressing their full selves, even if those steps involve bodily changes, nor is it right to impose “repaired” male or female anatomies on the bodies of intersex minors. All children can participate in these decisions when the time is right for them.