This federal rule didn't stop coercive sterilization — but it blocked contraceptive access. Can it be fixed? (2024)

Sonya Borrero didn’t learn about forced sterilization in medical school. She learned about it from a novel. She’s a historical fiction nut, and during her year as chief resident, she happened to pick up a book depicting the horrors of India’s population control program of 1975, when poor people were literally beaten up and dragged off the street into surgery. It made her wonder whether something like that had ever happened in the United States. And when she started reading about the thousands upon thousands of “unfit” American women coerced into tubal ligations and hysterectomies between the 1920s and 1970s, that gave her another dark prickle of curiosity. Was anything like that still going on?

That was how she came to be sitting in a glassy Pittsburgh conference room in the winter of 2007 and 2008, eating catered sandwiches, listening to women talking about their hopes, dreams, and sex lives in the name of research. All of them had either gotten or considered getting their tubes tied. What Borrero heard surprised her. Nationally, the sterilization rate was 22% for Black women and 15% for white women, and she’d been expecting participants of color to say they’d felt pushed toward these procedures — a subtler sort of eugenics, persisting in the way doctors spoke to their patients.

Often, she heard the opposite. People in the focus groups kept saying they’d been unable to get the permanent contraception they asked for. Physicians would insist a patient was too young, or steer someone away from surgery and toward an IUD. “They really tried to talk me out of it,” one Black participant reported. “And I said, ‘This is what I want to do, and you should honor my wishes.’”

Sometimes, the barrier wasn’t just the doctor. Sometimes, it involved government policy, too. Since the late 1970s, a federal rule has required any patient on Medicare or Medicaid to sign a specific consent form at least 30 days before a tubal ligation or a vasectomy. The idea is to protect people, give them time to metabolize information and make a careful decision, unpressured in the moment and unregretted later on. But the waiting period comes with side effects. If you’re hoping for a tubal ligation during your C-section, and don’t know to ask for it far enough in advance, you might be out of luck. A misplaced piece of paper could mean a wish unfulfilled and, in the most extreme scenario, an unwanted pregnancy.

This wasn’t news to some OB-GYNs. Nikki Zite, now a professor at the University of Tennessee in Knoxville, first noticed it when she moved to Memphis for residency. “Many of the patients who were suffering complications of pregnancy actually didn’t desire to get pregnant,” she said. “When I started looking back into their records, a lot of them had requested permanent contraception in the past, and were unable to access it.”

But Borrero is an internist by training, not an obstetrician. Those focus group discussions were the first she’d ever heard about this rule, and she became obsessed. On the one hand, it was having this unintended consequence. On the other, it didn’t seem to be accomplishing its goal: She heard inklings that people were, in fact, still being sterilized without true informed consent.

“Oh, my gosh, people have crazy amounts of misinformation!” said Borrero, who directs a gender health equity research center at the University of Pittsburgh. A prime example was one participant announcing, “You know that the tubes come untied in five years?” That was just false. If you gave permission to be sterilized while believing that, something had gone very, very wrong. The consent form was supposed to prevent exactly that kind of misunderstanding. It could be confusing, though, its language dense, its stipulations hard to keep straight.

As the study ended, Borrero’s team gave volunteers more accurate information. But that didn’t feel like enough. Was there a way to rewrite this form and its rules, so they were better at protecting against not fully consensual procedures, while allowing people to get tubal ligations if they wanted? It’s a question Borrero, Zite, and many others have been debating for decades, trying to catch the ear of policymakers.

Now, 45 years after the rules came into effect, the federal government is quietly considering a change — shortening the waiting period, clarifying the form — and with it, asking what consent actually means.

The origins of the federal sterilization rules lie in a field at the edges of Montgomery, Ala., where a city councilman brought a young social worker one day in 1972. What he wanted to show her was a destitute Black family, forced out of the countryside by joblessness, living in a makeshift home of cardboard boxes. These were the Relfs. The social worker couldn’t believe her eyes — and set about trying to help. She found them an apartment in a housing project. She solicited kitchenware donations at church. She enrolled the children in school, and took one of them to see a pediatrician who could assess her developmental disabilities.

As journalist Linda Villarosa writes in her book, “Under the Skin,” it was probably the family’s benefits — food stamps, welfare checks — that brought the Relfs to a family planning clinic’s attention. First, the daughters got contraceptive shots. Then, in 1973, two nurses came to the apartment and said the girls needed to see a doctor. At the hospital, Mrs. Relf was handed a consent form. She could neither read nor write, so she put an X on the line where a signature was supposed to go, and was driven home, while her two younger daughters were taken into surgery and sterilized. Minnie Lee was 14. Mary Alice was 12.

When the social worker found out, she was horrified. Though she’d had no idea about the sterilization until after it was done, she couldn’t shake the feeling that this was somehow her fault — that lifting the Relfs out of their hovel had brought them into harm’s way.

She ended up at the offices of the Southern Poverty Law Center, and the Relfs’ story ended up going 1970s viral. There was a high-profile court case, covered by NBC, Time magazine, Jet, Ebony, the Washington Post, the New York Times. There was a hearing with Sen. Edward Kennedy grilling federal health officials about using government funds for coercion. There was a collective call for anti-sterilization-abuse legislation from disparate corners: atheists and church groups, Black women’s associations and activists for population control.

The Relfs’ story ignited a firestorm of outrage about a practice that had been routine for 50 years. Other cases emerged. The government had to do something. So began a game of regulatory ping-pong — new rule, new outcry that it wasn’t enough.

A judge blocked one proposed rule because it still allowed the sterilization of minors; activists protested another because its 72-hour waiting period could whiz by while a patient was hospitalized, unduly swayed by doctors.

What ended up winning out, in 1978, was the “Consent for Sterilization” form, which anyone on government insurance had to sign at least one month — but no more than six — before a tubal ligation or vasectomy. It explained that you have to be at least 21, that sterilization should be considered permanent, that there are temporary contraceptive methods, that the surgery carries risk, that refusing it would not result in care being withheld, that consent could be given and then withdrawn any time before the operation.

As Rebecca Kluchin, a historian at California State University, Sacramento, points out, there was controversy from the get-go. Many feminist groups supported the rule, but some worried it might create a barrier to access, and set a precedent for restrictions on abortion. Some physicians bristled at what they saw as government interference. Some ignored the rule entirely.

Those issues never went away. Attention just moved elsewhere. Attacks on abortion access were ramping up, and reproductive health activists focused on mounting a defense. Meanwhile, the sterilization regulation became the barrier to permanent contraception that some had warned about, but only for those on public insurance, and even when doctors followed these directives, that didn’t necessarily ensure true informed consent. A recent STAT investigation found that, for decades, some women with sickle cell disease have felt pressured into getting sterilizations they didn’t want or didn’t fully understand, despite having signed the form at least 30 days ahead of time. In other words, federal dollars are still funding potentially coercive procedures.

A U.S. Department of Health and Human Services spokesperson said that the agency acts when it hears that an institution may not be respecting the rules. Researchers point out that the agency is limited in what it can do: Though the requirement emerged from the outrage over what happened to the Relfs, it’s enforced through the power of the purse. Break it, and the federal government won’t reimburse the surgery’s cost — morality by billing code. For the past four years, West Virginia has paid for Medicaid recipients’ tubal ligations with state funds only, bypassing these regulations entirely.

Changing policy is hard. Even a rule about dishwashers can become a political football, and everything only becomes more charged when sex and health care are involved. Borrero got an inkling of this around 2011, at a lecture by a former government official. He’d come specifically to help academics transmute their research into policy — and afterward, she ran after him, to talk sterilization in the lobby.

But he was wary. “He was like, ‘Wow, this is a hot-button topic,’” she recalled. “‘I’m not going to touch that with a 10-foot pole,’ was basically what he said.”

He did give her some advice, though. Do a cost analysis, he said. If you want to get politicians’ attention, translate the problem into an equation. The idea rubbed her the wrong way. These were real people, real unwanted pregnancies, real lapses in consent. Why wasn’t their suffering enough? Short of TED talks and TV spots, the usual path of professorial influence was a bit like a message in a bottle: Stopper your findings into a study, push it out into the datasphere, and hope it drifts to the attention of some lawmaker. For something so important, that seemed too indirect, too precarious. If a cost analysis would get legislators to care, maybe it was worth a try.

Previous research had found that only 53% of requests for postpartum sterilization were fulfilled. Sometimes that was because the person changed her mind, or was ineligible for surgery, or couldn’t get a slot in a busy OR schedule. But in over a third of cases, it was because of the federally mandated 30-day delay or related issues. Now, Zite and Borrero modeled a world in which the waiting period was eliminated, bumping the rate of fulfillment up from 53% to 77.5%. In a single year, nearly 30,000 unwanted American pregnancies could be averted, they found, some $215 million of taxpayer money saved — and that was surely an underestimate.

They published that analysis in 2013, in the journal Contraception, and an accompanying essay in January 2014, in the New England Journal of Medicine, the M.D.’s answer to Carnegie Hall.

It didn’t take long for a critique to emerge. There was an open letter in response from 11 powerhouse organizations, titled “Reproductive Justice Advocates: Don’t Roll Back Sterilization Consent Rules.” Then, there was a panel at the North American Forum on Family Planning, where some of Borrero’s idols — the very scholars whose writing had sparked her interest in this issue — put up a slide of the paper and explained why this research was taking the wrong approach, prioritizing a monetary rather than a humanistic view.

Sitting in the audience, Borrero entered a kind of fugue state. She’d helped organize this conference; colleagues knew her, could see her name up there, as the first author of the problematic paper. She could feel other attendees’ eyes on her, as if she were in some white-hot shameful spotlight. It wasn’t just in her head. “People were slowly realizing what was happening, and then orienting themselves toward her,” recalled Christine Dehlendorf, director of the person-centered reproductive health program at the University of California, San Francisco.

Borrero’s fight-or-flight response kicked in, her body coursing with adrenaline, her ears ringing, her mind unable to focus or think. She describes it as “probably one of the worst moments of my life.”

She realized that she’d been naive. She’d read “Killing the Black Body,” the 1997 classic about medical racism by Dorothy Roberts, a University of Pennsylvania professor who was one of the panelists. She knew that the histories of contraception and eugenics were uncomfortably intertwined. That the founder of Planned Parenthood had endorsed the Supreme Court decision allowing the forced sterilization of “imbeciles.” That an organization instrumental in researching hormonal arm implants, abortion pills, and IUDs had been led by a fan of the Nazi sterilization program.

And she knew that eugenics was partially about money, curbing the reproduction of the “unfit” to reduce the recipients of government aid. It’s no coincidence that the federal Department of Health, Education, and Welfare, which funded the Relfs’ sterilization, was the same one paying for their housing and schooling.

Borrero had thought that her work made clear that the aim was to prevent coercion, not facilitate it — that the policy change she was imagining could promote autonomy, and just happened to have a positive fiscal impact, too. But in retrospect, it wasn’t hard to see how an analysis of the money saved by sterilizations — even sterilizations that patients had requested — might set off alarm bells.

The panelists said they had little memory of that specific event — one panel in a long career of panels. But in interviews, all four of them spoke about the issue generally.

Their concern wasn’t just about overtones. They felt the waiting period was an important safeguard. “We are still in very much a xenophobic and racist society that has weaponized sterilization as a tool to prevent mostly women of color from having children,” said Jessica González-Rojas, then executive director of the National Latina Institute for Reproductive Justice, now a member of the New York state assembly.

For OB-GYN Melissa Gilliam, who is now the president of Boston University, those 30 days represented a way to hit pause, “an opportunity to debate, are we getting the best possible care to these people?” When some pointed out that the rules were unfair, making those on public insurance jump through hoops that others didn’t have to, her response was that everyone is operating in a two-tiered system, creating unequal access, and that’s what most urgently needed fixing. To her, the rule didn’t have to be a barrier. If practitioners were better at accompanying marginalized patients through pregnancy, this conversation could be brought up with enough time. She was less concerned about the consent form itself. “We want to be careful about not putting all of our attention into a piece of paper as the solution; where our attention needs to be is in achieving equitable health outcomes,” Gilliam said.

The issue extended far beyond medicine and the policies that govern it. As Roberts pointed out, “There’s widespread devaluing of certain people’s childbearing.” That was present in everything from negative stereotypes to laws that deny someone extra benefits if they get pregnant while on welfare — longstanding, pernicious cultural forces can seep into the exam room, creating subtle pressures.

The irony was, Borrero agreed with almost everything they said. The day of the panel, she’d wondered if she should leave the field, just fade away, leave this work to someone else. Instead, she asked two of the speakers if they would advise her research. She wished she’d been incorporating reproductive justice advocates’ perspectives into her work from the get-go.

We often talk of reproductive experiences in binaries. Was a pregnancy wanted? Did you experience regret? Was there informed consent? Each one sounds like a yes-or-no question, as straightforward as an on-off light switch, a box to be checked. Often, though, the stories are more shaded. Amirah Griffin Greene is a case in point. She’s a 46-year-old dog breeder in Philadelphia, and her sickle cell disease made her first pregnancy difficult, requiring blood transfusion after blood transfusion. She was 19. Every time she went to the doctor, she’d ask for a tubal — “and every time, she was like, ‘You’re going to want another baby,’” Griffin Greene recalled. “And she was correct.”

During her second pregnancy, at 23, she started asking again, until finally her obstetrician gave in. The waiting period meant she had to make an extra trip back for the surgery — a barrier that might’ve been insurmountable for some. Then, years later, she found herself yearning to nurture an infant again, wishing she could experience that same wild bond. But that was one impulse in a complex, contradictory tangle; she didn’t actually feel healthy enough to have another kid. She remembered being hospitalized, in pain, and watching her 2-year-old bounce a toy soldier along her IV tubing. Was that the kind of memory she really wanted to give to another child?

As many as a quarter of people who get tubal sterilizations may experience regret. Whether Griffin Greene counts among them might depend on when a researcher happened to ask. That the experience is so common — and so layered — can turn a doctor’s task into a high-wire act. The risk of paternalism lurks on all sides. It could lie in impeding a desired procedure or suggesting an unwanted one. It could be a true ethical breach, a perceived slight, or something in the middle, a message warping as it travels between people who inhabit different worlds. You’re trying to forestall regret without cramping autonomy, describe the dangers of pregnancy without fearmongering, explain other methods of contraception without causing information overload.

Borrero knows that fixing the consent form policy alone cannot fix all these possible issues. Both the barrier it poses and the coercion it allows are symptoms of a much wider syndrome — a cluster of racism, power imbalance, unequal access to information and care. To her, they will persist as long as some people’s reproduction is valued more than others’, some people’s wishes for their bodies attended to more carefully than others’. These conversations are inherently sensitive, the stakes high. As Borrero put it, “Contraception can be both a tool of liberation and oppression.” Framing it right is important but not necessarily simple.

She agrees that sweeping change is urgent — that everyone should have compassionate, continuous care throughout their pregnancy, with a trusted clinician checking in about their reproductive hopes and decisions; that no one should need to choose sterilization because Medicaid coverage will run out six weeks after giving birth and they won’t have access to a practitioner who could take out an IUD or write birth-control refills. To her, the piece of paper wasn’t the solution, just a small part of it, worth improving while doing the slow work of tackling racism and health care dysfunction writ large.

How do you ensure that what gets spoken aloud allows true consent to occur? You could mandate that medical students learn about the history and possibility of coercion, the way Borrero did not, though it would likely entail a political battle. You could record the doctor-patient interaction, but that raises privacy concerns. You could insist that an independent patient advocate be present, but with what money would they be paid? You could reimburse doctors separately for these conversations during pregnancy care, the way the government does end-of-life discussions, incentivizing slowness rather than the opposite — but that, too, requires funding. You could create a specific hotline for such concerns, but other federal attempts have faced challenges, with some suicidal patients calling and hearing not a counselor but the muzak of being on hold. Some point out that government rule-making may not be the best tool to make this fix.

One tack that Borrero, Zite, and colleagues have been developing is a decision aid: an online curriculum, with pictures laying out how tubal sterilization works, tables comparing the pros and cons of various contraceptive methods, sections encouraging patients to consider what aspects of the decision they still aren’t sure about. They’ve found that it’s significantly better than the federal “Consent for Sterilization” form at helping patients understand what they’re signing up for.

Borrero could imagine that decision aid, or something like it, being incorporated into the consent process. But she could also imagine a better, clearer federally mandated form. There are millions of Americans on government insurance, and if any of them wanted sterilization, this piece of paper was unavoidable, an obligatory hoop to jump through, an inescapable rite of passage. Even just simplifying its language could help ease access to contraception for some and allow others to give consent after being more informed.

When Zite gave the current consent form to nearly 100 women on Medicaid in 2010 and then assessed their comprehension, 34% didn’t understand that the surgery should be considered permanent, and 80% didn’t understand that their consent would expire six months after signing. Other studies have reported even higher proportions of people who read the form and still incorrectly thought that the procedure was easily reversible or that their tubes would spontaneously come untied. For a long time, Zite and Borrero have thought that was a symptom worth treating — a change that’s easy to get behind.

In the upper-right-hand corner of the federal sterilization consent form is a date: the year this document was last approved. Every few years, it would come up for review, and every few years, Zite, Borrero, and their colleagues would ask that the policy be revisited. “Every time, the open comment period ends, and they just put a new date in the upper-right-hand corner of the paper,” said Zite. Everything else on the form has stayed exactly the same.

Then, in 2023, something shifted. All of a sudden, the Department of Health and Human Services invited researchers and advocates to a meeting, to figure out where different groups stood on the sterilization policy. Why the door opened a crack after years of being shut tight wasn’t entirely clear. It could’ve been the crisis in reproductive care after the overturning of Roe v. Wade the previous year, abortion bans pushing more people to seek sterilization. It could’ve been the buildup of data about the barrier that the rule represents.

It also could’ve been Sonya Borrero’s arrival within the agency, as a chief medical and scientific adviser. It happened by accident: She’d mentioned to colleagues that the pandemic had paused recruitment for her studies, adding pressure to the academic hamster wheel of grant deadlines, wearing her down — and then two different people called, asking if she’d be interested in this job. She couldn’t stomach leaving research for good, but this seemed too good to pass up: For so long, she’d wondered what went on inside those rooms. The University of Pittsburgh gave her a yearlong sabbatical.

She can’t talk about the work she did at HHS, besides saying that a sliver of it was about sterilization policy. But that first listening session opened a discussion, and one of the nonprofits involved, the Coalition to Expand Contraception Access, kept it going, inviting attendees to more roundtables, bringing together Black reproductive justice advocates, disability rights activists, physicians’ groups — the mix of perspectives that Borrero had realized needed to be involved.

“There were folks that were very much like, ‘Let’s get rid of the waiting period altogether,’ and others that wanted to maintain it,” said Lauren Wallace, senior counsel at the National Women’s Law Center. Those ideas began to shift and to meld over the course of those consultations. A patient talked about being unable to get the tubal ligation she wanted. Another shared a recent story of being sterilized without full informed consent. By the end, Wallace said, the various groups met in the middle, agreeing on a reduced waiting period without eliminating it entirely.

Some of the other recommendations that emerged also had the aim of ensuring that the procedure is accessible to those who want it: Keep the consent form valid for a whole year, so it doesn’t expire after six months. Allow people to consent to sterilization while they’re seeking abortion care. Reduce the minimum age of consent from 21 to 18.

Other parts of the discussion, though, were about better ensuring that consent is informed. One suggestion was to include guidance on supported decision-making, which allows those with disabilities who might not be able to fully consent on their own to do so in consultation with trusted people they’ve chosen. Another had to do with making the paperwork easier to understand. “The reading level on the form is way higher than what is recommended for medical forms,” said Camille Kidd, senior manager of federal policy at In Our Own Voice, a Black women’s reproductive justice group. “For something this important, that should be a fix that HHS can make.”

Undergirding all this is the idea of better tracking the trends showing who is actually signing these consent forms. “As far as we know, there may be some data collection and monitoring at the state level, but nothing to speak of is happening at the federal level,” said Lisa Stern, deputy director of the Coalition to Expand Contraceptive Access.

The first government-held listening session was in March 2023; the concrete suggestions were sent to HHS in December. But as that former government official put it over a decade ago, this is a hot-button issue. The government is in pre-election mode. Some suspect little will happen until after November. Borrero has returned to the University of Pittsburgh — back outside the castle after a brief stint within. HHS has not responded to requests for comment on what’s become of the proposed policy changes. The documents are sitting somewhere, in the federal empire of paper, every page at once flimsy and potentially life-altering.

This story is part of ongoing coverage of reproductive health care supported by a grant from theCommonwealth Fund.