Sterilization of Sickle Cell Patients Is Part of a Long History of Abuse

In late May of 2024, STAT’s investigative reporting shed light on the stories of seven women with sickle cell disease (SCD) “who reported being sterilized with questionable consent.” STAT’s interviews included physicians and other medical professionals, who said “they’ve directly heard about dozens of other instances.” Many of the women were sterilized during a C-section or while undergoing a different type of medical procedure. 

The STAT piece, “Coercive Care: How Doctors Are Pressuring Sickle Cell Patients into Unwanted Sterilizations,” features the harrowing stories of women who now regret their decision to end their ability to have a child in the face of coercive medical practices. The cases allege that women were pushed into making abrupt decisions about their reproductive lives, where the complications of pregnancy for women with SCD were presented as almost certain death.

Though women with SCD may encounter specific obstacles, with proper medical care, their pregnancies can be managed. According to an article from the Mediterranean Journal of Hematology and Infectious Diseases, “Though SCD adversely affects pregnancy, leading to increased incidence of maternal and perinatal complications like pre-eclampsia, [and] preterm labor…adequate care throughout pregnancy ensures a better outcome.” The paper details how to treat each of the major issues tied to maternal death and poor outcomes for newborns, which emphasizes that while these pregnancies may be high risk, they are also treatable. With high-quality medical care, women with SCD can have healthy babies.

STAT’s investigative reporting shed light on the stories of seven women with sickle cell disease “who reported being sterilized with questionable consent.” 

However, the potential complications SCD raises are compounded by the US healthcare’s systems poor overall mortality and morbidity rates, which are even more pronounced in Black women. The maternal mortality rate for Black women is two-and-a-half times higher than for their White counterparts, with Black women as much as three to four times more likely to die during childbirth than White women. When it comes to SCD, the rates are even more devastating. According to researchers at Johns Hopkins Medicine—who used a national administrative database that included more than five million deliveries, including deliveries among pregnant people with SCD—the maternal mortality rate for women with SCD is 26 times greater than the national average.      

Two gripping stories illustrate the complexity of the challenges pregnancy poses for women with sickle cell disease, as well as the profound sense of loss for women who were pushed into undergoing sterilization. Whitney Carter, who was urged to consent to a tubal ligation a month before she was scheduled to give birth via C-section, said, “Once I sign, it’s like, OK, now I’m going to go give birth, and I’m going to be open. I mean, I can speak and say, ‘No, I don’t want this done,’ but they have my signature on a piece of paper.…I don’t know how that works. I just felt like, I guess this is for the best. But it wasn’t the best for me. I guess it was the best for them, because they didn’t have to deal with another sickle cell patient coming into their office saying they’re pregnant.” 

When her younger daughter was born in 2004, Tonya Mitchell’s doctor told her that she could get her tubes “untied” when she was ready to have more children. At the time, Mitchell was unaware that tubal ligations are difficult to reverse and that undoing the procedure is not possible in many cases. In 2008, when she ran into issues with one of her ovaries, another doctor suggested that both ovaries be removed. To make matters worse, when Mitchell woke up from the surgery, she was informed that her uterus was also removed. Mitchell, who had two children but wanted more, said she “grieved” over losing her capacity to have more kids. Due to the removal of her reproductive organs, Mitchell went through menopause at age 30 while also managing SCD.  

STAT’s reporting, which was supported by The Commonwealth Fund, chronicles the latest incidences of unjust restrictions and coercion foisted upon Black women, whose American experience is tainted by a long history of abuse. 

Black Women’s Fraught Relationship with Reproductive Autonomy

With high-quality medical care, women with [sickle cell disease] can have healthy babies.

The legacy of slavery, when enslaved Blacks had no control over their reproduction, casts a long shadow over Black American women’s reproduction. In her seminal text on the lack of reproductive autonomy among Black women, Killing the Black Body: Race, Reproduction, and the Meaning of Liberty, Dorothy Roberts writes: 

Black procreation helped to sustain slavery, giving slave masters an economic incentive to govern Black women’s reproductive lives. Slave women’s childbearing replenished the enslaved labor force: Black women bore children who belonged to their slaveowner from the moment of their conception. This feature of slavery made control of reproduction a central aspect of whites’ subjugation of African people in America. It marked Black women from the beginning as objects whose decisions about reproduction should be subject to social regulation rather than to their own will.¹ 

Therefore, early on in American history, Black women’s reproductive decisions were made by slave-owning White men who forced Black women to procreate at inhumane rates to increase the enslaved labor force.

Unfortunately, forced procreation was not the only egregious manifestation of reproductive injustice that Black women suffered during slavery. The history of medical experimentation on Black women by James Marion Sims, who is referred to as the “father of American gynecology,” and his “surgical theater” serve as another early instance of the exploitation and cruelty imposed upon Black women.² These surgical theaters often included enslaved women who received gynecological procedures without anesthesia in front of crowds of White medical students.

By the mid-20th century, Black women began facing the opposite problem: having their reproductive capacity eliminated without their consent and sometimes without their knowledge. One of the reasons behind the shift, ironically, was the success of the Civil Rights movement, and the new reality in the 1960s that Blacks, like Whites, could receive federal aid and were entitled to citizenship rights.³ For Black Women in the United States, this altered the way their childbearing was viewed, and instead of being forced to procreate to increase slaveowners’ “property,” they began to have their right to reproduce challenged instead. 

For women with sickle cell disease, all these reproductive abuses must be viewed alongside the racist and problematic history surrounding their disease.

During this time, Black women were subjected to what were colloquially referred to as Mississippi appendectomies or “unnecessary hysterectomies performed at teaching hospitals…as practice for medical students.” Under this practice, Black women who were at the hospital for a different procedure altogether would wake up to find they’d been given a hysterectomy without their consent. In 1961, acclaimed Civil Rights activist Fannie Lou Hamer was one of the women to receive the unwanted surgical procedure that left her unable to bear children. The practice was state-sanctioned, upheld by the Supreme Court, and extended into at least 1980. 

Unfortunately, the suppression of Black women’s reproductive autonomy extends far beyond slavery and the institutionalization of eugenics into the modern day. 

Efforts to keep Black women on welfare from having babies was common in the 1990s. According to the National Black Women’s Reproductive Justice Agenda, during this time, “coercive state policies attempted to force women with low incomes to accept sterilization or the Norplant implant in order to receive public benefits.” Norplant—which consists of a set of small, soft tubes that are surgically implanted into a woman’s arm—may, at first glance, seem like a viable birth control option. However, while women receiving welfare benefits were able to get Norplant implanted without issue, few doctors would remove the tubes, making Norplant a more permanent restriction on having children than other methods of birth control.

Black women’s lack of reproductive autonomy also has ties to mass incarceration. In the early 2000s, nearly 150 Black women who were inmates of the California Department of Corrections and Rehabilitation were forcibly sterilized by the institution. In 2017, a Tennessee judge offered reduced jail sentences for defendants if they agreed to sterilization or Norplant. Given the hypercriminalization of Black people, such a measure disproportionately affects Black Americans. 

Restoring Autonomy for Women with Sickle Cell Disease 

For women with sickle cell disease, all these reproductive abuses must be viewed alongside the racist and problematic history surrounding their disease. Historically, the unbearable pain of SCD was ignored, and Black patients’ pleas for better treatments or medications were dismissed as drug-seeking behavior. Additionally, SCD remains critically underfunded, especially when compared to diseases that primarily affect White populations, such as cystic fibrosis. New gene therapies that provide a “cure” for the disease are far too expensive for most patients to afford, which presents significant barriers to access.  

Within the neoliberal mindset, reproductive rights are too often framed as matters of individual choice. To the contrary, reproductive autonomy is a social justice issue—it’s a matter of health, racial, and economic justice. Though some medical professionals may urge SCD patients to rethink pregnancy out of genuine concern, they should be cautious in how they present the matter to SCD patients. Approaching such a complex and emotionally charged issue ethically means presenting all the necessary information during a time when patients can make well-reasoned decisions, not during a stressful life event like the lead-up to a C-section. 

SCD patients also need to feel empowered to ask questions of medical professionals or even mount challenges when necessary. While medical professionals aren’t entirely to blame if a patient privileges professional opinion above their own, they should be aware of how power and authority show up in their practice. They can balance the scales by engaging in active listening and respectful exchanges that honor patients’ views and concerns. By encouraging better dialogue between physicians and patients, demanding medical institutions commit to justice and ethics as part of their promise to “do no harm,” and holding individuals and institutions accountable when they fall short of these aims, we can begin to break the cycle of reproductive abuses against Black women.

Regardless of their health, social, or economic status, as the National Black Women’s Reproductive Justice agenda asserts, to realize fairness and autonomy in decisions about childbearing, reproductive choices must be made by Black women, not for Black women.  

 

Notes 

1. Dorothy Roberts, Killing the Black Body: Race, Reproduction, and the Meaning of Liberty (New York: Vintage Books, 1997), 22–23. 
2. Harriet A. Washington, Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present (New York: Anchor Books, 2006), 101–106.
3. Tonie Marie Gordon, “To ‘Fill the Comfortable Cradles and Empty the Gutters’: Maternalist Eugenics and Reproductive Inequalities in the United States” (PhD diss., University of Virginia, 2015).