As I scrolled through Ms. Jones’ chart, I jotted down her chronic problems: hypertension, depression, and urinary incontinence. She was taking lisinopril and sertraline. She had seen gynecology back in February for surgical management of the incontinence. The chart said she wanted a hysterectomy as “definitive management.” It seemed the surgery was canceled due to COVID-19. I made a note to check in about that.
A middle-aged Black woman in a deep green sweater greeted me warmly as I entered the room. Aside from a conversation on the phone to refill medications, we were meeting for the first time. She wanted to start with her incontinence. It was really bothering her. I asked about the plan for a hysterectomy.
She paused. “I never wanted a hysterectomy, just the surgery to fix the incontinence.” She explained that the first time she heard about any kind of hysterectomy was when a nurse called to confirm the surgery’s date. “I’d like to think I would’ve figured it out before it actually happened,” she said. She recalled hearing the doctor talk to someone in another room about a hysterectomy. “Maybe she confused us . . .” her voice trailed off.
Race-based medicine: from hypertension to hysterectomies
While the medical community seems to be coming to a consensus that “race is a social construct,” whether or not this is reflected in practice is a different story entirely. For instance, most healthcare systems still calculate kidney function, or GFR, based on a person’s reported race. This practice created a disparity in transplant rates. In another example, hypertension regimens recommendations are different for Black patients. As such, many physicians would not have Ms. Jones on lisinopril as first-line management for hypertension despite its renal-protective advantages.
Some examples are more blatantly racist. Ms. Jones’ experience, while possibly not due to malintent, is not an anomaly. Hysterectomies have long been performed on unknowing Latinx and Black, Indigenous, and Women of color. One-third of Puerto Rican women were sterilized between 1930 and 1970s and the IHS systemically sterilized Native Americans in the 1970s. The practice was so common in the south it was nicknamed the “Mississippi Appendectomy” by civil rights leader Fannie Lou Hamer. It has continued into the 2000s with California prisons sterilizing Latinas as recently as 2010. Just this year, whistleblower Dawn Wooten uncovered a troubling incidence of medically unnecessary hysterectomies occurring in a Georgia Detention Camp.
Beyond the robbing of fertility, a hysterectomy is taking a person’s womb. It is an involved surgery with risks. Where was the informed consent for the thousands of Black, Indigenous, and Latinx patients over the last century? Medicine in the U.S. has a dark history of disregard and objectification of so-called non-white people.
Slavery and reproductive injustice
The concept of different races began to emerge in the late 18th century to rationalize chattel slavery. The history of reproductive injustice towards Black women underlines this point. Reproductive justice includes the right to not have a child or have a child, and the right to raise one’s children in a safe and healthy environment. Enslaved women had none of these.
In 1662, Virginia statute mandated all children born to enslaved women via (rape by) white men were born into slavery. Women were diminished to reproductive vessels – coerced with extra rations for their families and then forced to work late into pregnancy. Small trenches in the ground protected their profitable bellies from whippings.
Medicine directly profited off of this disregard for the humanity of enslaved people. Physician Marion Simms, often renowned as the “father of gynecology,” created the speculum and perfected fistula repairs on enslaved women without any anesthesia. He would then give them post-surgical morphine, further exerting his control. Enslavers and physicians alike believed Black people felt less pain.
Today, one can find countless articles debating whether this torture was acceptable when viewed in the historical context. Yet even today, we use less pain medication for Black patients. During the first few weeks of residency, I had two different patients who told me they underwent painful dermatologic procedures without anesthesia. Will we one day try to argue this as acceptable given the racism in today’s society? This logic is entirely flawed.
Reproductive injustice today
Control over reproduction that disproportionately affects people of color continues: forced sterilizations; tying welfare to insertion of Norplant (a long-acting reversible contraceptive); biased family planning; limited access to abortion services. Access to assisted reproductive technology [pdf] in communities of color is abominable.
When Black women do have babies, they are at increased risk of death. Further, the mortality gap between Black and white infants has widened since chattel slavery. Many Black mothers still do not have a safe environment to raise children. Police violence kills about 1,000 people every year and shows no signs of slowing down. Blacks are killed at twice the rate of whites, despite only making up 13% of the population. Young Black men are disproportionately affected, accounting for the most life years lost.
More insidiously, environmental racism systemically affects communities of color. It is estimated that two in every five African American households are exposed to unsafe levels of lead. This directly places young children at risk for developmental delay and lower IQ, along with a myriad of other health concerns. Author Harriett Washington argues this is leading to the systemic oppression of the minds of people of color.
Medicine and racism: complicit and complacent
Medicine does not just practice within societal norms. It helps to establish and maintain them. The human genome project confirmed there is no genetic basis to race – there are more differences within groups than between groups. All the same, we have continued race-based diagnostic and therapeutic modalities. Bidil was FDA approved as the first race-based medicine without evidence of working more effectively in African American people. In the age of direct-to-consumer advertising, this might as well be a commercial to the world that medicine believes race is a biologic construct. Moreover, it directly feeds into the implicit bias of providers.
Every day we are silent or even continue as things are, we perpetuate violence against Black, Indigenous, and other people of color. Physicians and healthcare researchers have the power and privilege to see these trends, work to ameliorate them, and speak out for political change. For example, we can diligently screen for lead levels in infants and organize for safe and affordable housing. Moreover, we must provide full comprehensive reproductive healthcare, constantly checking our internalized racism, and following the patient’s fully informed preferences.
Overdue change
Ms. Jones has not yet decided whether she wants to continue her care with the same gynecologist. I’m sure that the doctor would be horrified to realize what she had done. All the same, horror does not absolve us or the system of medicine at large.
Medical education and research must change in order to provide just patient care.
An implicit bias lecture is not enough. Information should rather be grounded in critical race theory, include medicine’s troublesome history, and be taught by diverse faculty. Black women, who founded and lead the reproductive justice movement, only make up 2% of physicians in the US. This, over a century after the Flexner report disproportionately closed predominantly Black medical schools. We are changing at glacial speed. Hiring one new Black faculty member or resident does not fix the problem. Rather, it often continues harm done through the minority tax. A substantial amount of both faculty and trainees should reflect the community and will improve care.
Researchers must examine the ethos behind their studies. Many only worsen our troubled relationship with racism and race-based medicine. A new study in JAMA argues that controlling for comorbidities means there was no racial disparity in COVID-19 mortality. As if racism didn’t play into the development of those comorbidities in the first place. We must assess how we form hypotheses, taking into account what we already know about racism and its effects on health and health inequity.
A reckoning and a path forward
Reproductive justice, long fought for but coined by Sister Song in 1994, posits three tenants: the right to not have a child, to have a child, and raise them in a safe environment. We as a society are failing Black, Indigenous, and other women of color.
The medical community helped to cement the race construct and used to control the reproduction of those we considered less. We must change and repair our wrongs. Otherwise, we risk continuing maleficence produced by our historically and continually white medical-industrial complex. Restorative justice can guide us:
- Respect the dignity and humanity of Black, Indigenous, and People of Color over white fragility.
- Center (and actually listen to) Black, Indigenous, and People of Color (patients, community members, and providers alike).
- Use an intersectional lens to address the racism, sexism, and homophobia laid bare in our interactions with both each other and the care we provide.
- Advocate for reparations to address historical harms and the Black-white wealth gap as a public health priority.
Author’s note: I use ‘women’ in this piece for ease of reading, but this applies to all people with female reproductive organs, regardless of gender identity.
Libby Wetterer