California Legislation to Prohibit Unnecessary Genital Surgery on Intersex Babies

Legal rights for intersex individuals (people born with variations in their sex characteristics, including genitalia) took a large step forward this week, thanks to Senator Scott Wiener (D-San Francisco) and a coalition of civil rights, intersex, healthcare and LGBT advocates.

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Last week, Weiner introduced Senate Bill 201 – legislature which ensures that people born with atypical genital characteristics have the right to provide informed consent before undergoing genital surgery that are potentially harmful, including reducing a clitoris, creating a vagina or removing healthy gonadal tissue. SB 201 also avoids having physicians and parents surgically assign a baby’s gender as opposed to a child expressing their own gender when they are ready to do so. Senate Bill 201 would not prohibit treatment or surgery when it is medically necessary; it simply prohibits cosmetic surgeries on babies that are medically unnecessary and based on a desire to “normalize” a child’s genitals.

“Everyone deserves autonomy about who they are and what medically unnecessary surgeries they undergo,” Wiener said in a press release. “This legislation allows individuals to choose for themselves if and when they undergo life-altering medical procedures. Parents and doctors have a critically important role to play in the health and well-being of their children, but we should not deprive individuals of the right to choose whether to undergo invasive surgeries that are cosmetic, medically unnecessary, and associated with long-term permanent health consequences. It’s particularly important to allow individuals to make their own healthcare decisions when a medical procedure makes potentially irreversible decisions about a person’s gender assignment – a decision that each person should be able to make on their own. I look forward to working with our broad coalition of intersex advocates, medical professionals, LGBT advocacy organizations, parents, civil rights organizations, and affected individuals to pass this important human rights legislation.”   

About 1-2 percent of people in the world are born with variations in their sex characteristics, referred to as intersex traits. A subset of these variations are recognized at birth, while others may go unnoticed until later in life or may never be recognized, according to a press release. Although a very small percentage of intersex infants may require immediate medical attention—for example some are born without the ability to pass urine—the vast majority are born perfectly healthy and able to live rich, fulfilling lives without any modification to their genitals.

“SB 201 preserves options for families of children born with natural variations in sex characteristics and genitalia,” said Kimberly Zieselman, the executive director of interACT: Advocates for Intersex Youth, an intersex woman herself affected by the surgeries. “Drastic cosmetic procedures, like reducing a clitoris or creating a vagina for an infant, have not been proven beneficial, compared to delaying for the individual’s informed consent—acting has high stakes, while waiting costs nothing. Attempting to erase these natural differences perpetuates a message of shame, stigma, and homophobia. Medicine evolves alongside social acceptance, and this bill sends a clear message: there’s no rush to perform these surgeries on infants. interACT is proud to be a part of this historic human rights effort. ”

Beginning in the mid-1900s, physicians would modify the genitals of infants they considered atypical, even if the surgeries were purely cosmetic and not medically necessary. These treatments and interventions often resulted in extreme scarring, chronic pain, incontinence, loss of sexual sensation, post-traumatic stress disorder and incorrect gender assignment. While a number of doctors continue to perform these often irreversible procedures in infancy based on the theory that they will help intersex people feel more “normal,” no research definitively proves that claim, and all major groups led by affected adults condemn the practice when performed without the consent of the individual involved, according to a press release.  

“When my daughter was born in 2012 with an intersex condition known as Congenital Adrenal Hyperplasia, we faced intense pressure to consent to cosmetic surgeries to reduce the size of her clitoris and create a vagina for heterosexual intercourse,” parent and author Eric Lohman said in a press release. “I was surprised and angered by the fact that some did not agree that delaying cosmetic surgery until our daughter could decide for herself was the only ethical choice.”

SB 201 builds on Wiener’s 2018 Senate Concurrent Resolution 110, which called on the medical community to delay performing medically unnecessary sex-assignment and genital “normalization” procedures until an individual can provide informed consent. The resolution was the first of its kind in the nation. If passed, SB 201 would make California the first state to mandate intersex patient participation in decision-making before procedures such a clitoral reductions are performed.

SB 201 is co-sponsored by interACT, Equality California, the American Civil Liberties Union of California, and is also supported by Human Rights Watch. It is co-authored by Senator Jim Beall (D-San Jose), and Assemblymembers David Chiu (D-San Francisco), Todd Gloria (D-San Diego), Kevin McCarty (D-Sacramento), Phil Ting (D-San Francisco), and Bill Quirk (D-Hayward).  

 The bill was officially introduced on January 28, and will be set for a committee hearing in the coming months.