Who should get to decide what to do when a baby is born with atypical genitals?
That’s the question lawmakers are grappling with as they consider a measure that would ban doctors from performing genital-altering surgeries on infants unless deemed medically necessary.
Senate Bill 201 is aimed at preventing parents and doctors from operating needlessly on intersex infants. The bill defines intersex as “an individual born with sex characteristics, including genitals, gonads, and chromosome patterns, that do not fit typical binary notions of male or female bodies....”
Current law allows parents to give doctors consent to do surgery on behalf of their children.
Supporters of the bill, including sponsor Sen. Scott Wiener, D-San Francisco, argue that the choice of surgery as life-altering, and irreversible, as sex reassignment or alteration should belong to the person receiving that surgery unless failing to do the surgery would result in severe health or quality of life problems.
Opponents, including San Diego-based pediatric urologist Dr. Kelly Swords, say surgery at an extremely young age can spare a person years of pain and humiliation while surgery later in life can be traumatic and full of complications. She said the Legislature shouldn’t apply a “one size fits all” approach to such a complex decision.
Both sides offered forceful testimony at a sometimes-tense Monday hearing.
Kimberly Zieselman was one of the witnesses testifying in favor of SB 201. She was born an intersex woman and now serves as executive director for interACT, which bills itself as “the largest and oldest organization in the country exclusively dedicated to advocacy on behalf of children born with variations in their sex characteristics.”
Zieselman criticized the medical community’s history of arbitrarily assigning a sex to intersex children, often without even consulting parents about the child’s condition.
“I learned the truth about my body at age 41 after doctors lied to me and my family for decades,” Zieselman told lawmakers. “Frankly, what hurts the most is not the physical pain but the knowledge that we were robbed of our own most intimate choices.”
Dr. I.W. Gregorio, who sits on the interACT board, also testified for the bill. She called the existing practice of doctors and parents deciding whether to perform genital-altering surgery a human rights violation.
“I’m here because I truly believe that intersex care is one of the greatest ethical failures of modern medicine,” she said.
Several people identifying as intersex also stepped to the microphone to offer their support for SB 201. However, a large number of people born with conditions which SB 201 labels as intersex also voiced their opposition to the bill, as did several doctors.
One woman born with Congenital Adrenal Hyperplasia, also known as CAH, joined Swords in testifying against SB 201.
Adrienne Marks had two surgeries as a small child — one to open her vaginal canal and one to reposition her clitoris — and challenged SB 201 supporter statements that infant genital surgery is akin to female genital mutilation.
“To be clear, in no way was my clitoris chopped off or cut,” Marks said. “Surgery was not intended to make me heterosexual or change my gender.”
Marks said that if SB 201 had been law when she was born, she would have been condemned to a life of pain, constant medication and humiliating conditions like wetting herself, which she said would not meet the threshold of medical necessity to correct set by the bill.
The bill defines medical necessity as “when it is reasonable and necessary to protect life, to prevent significant illness or significant disability, or to alleviate severe pain.”
Wiener disagreed with Marks’ interpretation.
“There are definitions of medical necessity. This isn’t some vague ambiguous thing,” he said.
The bill pits civil rights groups, including the American Civil Liberties Union, Amnesty International, Equality California, the Trevor Project and interACT against many in the medical community, including organizations such as the American Medical Association, California Medical Association, a collection of urology organizations and the CARES Foundation, “which represents nearly 10,000 individuals and families affected by CAH.”
Zieselman said that the decision on whether to alter an infant’s genitals has “historical roots in sexism and homophobia,” as well as anti-transgender sentiment.
Several doctors, including Swords and Sen. Richard Pan, D-Sacramento, who is a pediatrician, warned that SB 201 could make doctors overly cautious in treating patients because they fear risking their licenses.
“Trust your medical providers, trust your state board licensing people and these multidisciplinary clinics. We’re going to work together, and we’re going to find the best answer,” Swords said.
“The challenge here is we’re trying to legislate practice of medicine,” said Pan.
Calling it “a very difficult topic,” Senate Committee Chairman Steven Glazer, D-Orinda, deferred the bill to a future hearing.