A state bill designed to provide intersex individuals with informed consent for medical treatments regarding their sex characteristics has been pushed to a vote in 2020
Last week, Senator Scott Wiener (D-San Francisco) announced that legislation to ensure intersex individuals—a term used often used by people born with variations in their sex characteristics, including genitalia—can provide informed consent before any medical treatments or interventions that could irreversibly affect their fertility or sexual function, will be pulled from the 2019 legislative session and pushed to 2020. After hearing testimony on the bill last Monday, the Committee decided to postpone the vote to see if consensus could be reached between the bill’s supporters and medical associations that had previously refused to negotiate with Senator Wiener.
Senate Bill 201 would give individuals the opportunity to delay medically unnecessary, potentially harmful, irreversible procedures until they have the ability to make an informed decision for themselves.
“SB 201, at its core, is about giving people born with variations in their sex characteristics autonomy over their own bodies and lives. When it comes to choosing deeply personal interventions for an individual when they may not be wanted, acting is risky, while waiting costs nothing,” a press release stated. “Delay gives individuals and their families the most options, including access to future medical advances once the patient can understand the risks and their own priorities. Senate Bill 201 would not have prohibited treatment or surgery when medically necessary; it simply prohibited medically unnecessary surgeries on babies that are purely elective and based on a desire to “normalize” a child’s genitals. Some of these surgeries include invasive procedures such as reducing a clitoris, creating a vagina, or removing healthy gonadal tissue. They can also lead to assigning a gender before an individual has the opportunity to express a gender for themselves.”
Comprising approximately 1-2 percent of all people, those born with both with variations in their sex characteristics, sometimes referred to as intersex traits, aren’t rare—they are just invisible. A subset of these variations are recognized at birth, while others may go unnoticed until later in life, if ever. Although a very small percentage of intersex infants may require immediate surgical intervention—for example some are born without the ability to pass urine—the vast majority are born with no health issues related to their genitals and are able to live rich, fulfilling lives without any modification.
“We’ve made significant strides in California to protect the right of sexual minorities to determine our lives and make decisions about our own bodies, but much work clearly remains to raise awareness and educate about this important civil rights issue, both in the Legislature and in the medical profession,” Wiener said. “Progressive California should not be denying individuals the basic human right to decide what happens to their own bodies, yet that is exactly what is happening as surgeons and parents assign genders to babies without any actual input from that child. SB 201 stands for a very basic and common-sense notion: That individuals should choose for themselves if and when to undergo life-altering and gender-assigning surgeries that aren’t medically necessary. Our broad coalition of intersex advocates, medical professionals, LGBT advocacy organizations, parents, civil rights organizations, and affected individuals look forward to the day when this basic human right is respected and protected by law, and we will continue to fight to make this vision a reality.”
Beginning in the mid-twentieth century, physicians began modifying the genitals of infants they considered atypical. These treatments and interventions have included infant vaginoplasties, clitoral reductions, and removal of gonadal tissues, and may result 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 irreversible procedures in infancy based on the theory that they will help intersex people feel more “normal,” no research definitively proves that claim, or the assumption that conformity is more important than autonomy over their bodies. All major groups led by affected adults condemn the practice when performed without the consent of the individual involved.
Three former Surgeons General, who were appointed by Presidents of both parties, oppose medically unnecessary genital surgery on intersex babies stating, “When an individual is born with atypical genitalia that pose no physical risk, treatment should focus not on surgical intervention but on psychosocial and educational support… [I]ntersex persons routinely face forced medical surgeries that are conducted at a young age without free or informed consent. These interventions jeopardize their physical integrity and ability to live free.”
“SB 201 has not only already raised tremendous intersex visibility in California and national media, it has given our entire community hope that compassionate and ethical care for children born with intersex traits is on the horizon,” said Kimberly Zieselman, Executive Director of interACT: Advocates for Intersex Youth, an intersex woman herself affected by the surgeries.
“At its core, SB 201 is about the State of California respecting each and every person’s autonomy over their own body and their own gender identity,” said Equality California Executive Director Rick Zbur. “California has led the way in protecting the civil rights of LGBTQ people over the last 20 years, and the fundamental principle underlying those protections has been respect for an individual’s own sexual orientation, gender identity and autonomy over their body. The bill’s delay today means that thousands more Californians will be subjected to medically unnecessary and often irreversible procedures aimed at ‘normalizing’ their bodies—without their consent and before they have any sense of their gender Identity.”
“We are proud that SB 201 has brought awareness of this marginalized population of children to the legislature. California already prohibits certain other practices with high risks of irreversible harm from taking place during childhood. SB 201 is in line with this approach and will help ensure that care is centered on the needs of patients themselves, not the ‘normalization’ of their bodies,” said Becca Cramer-Mowder, Legislative Coordinator and Advocate for the ACLU of California.
SB 201 builds on Senator Wiener’s Senate Concurrent Resolution 110, passed in 2018, 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, and called on the medical community to create clear guidelines to protect this population of vulnerable children. Unfortunately, the California medical community failed to act, and it became clear that SB 201 was needed to drive this next step. The bill was opposed by the California Medical Association, the American Association of Clinical Urologists, the American Urological Association, the California Society of Plastic Surgeons, the California Urological Association, the Pediatric Endocrine Society, and the Societies for Pediatric Urology.