In this op-ed, Camryn Dixon explains the history of racism in health care, and how it impacts the present.
Imagine your body being experimented on without your consent. This might sound like a scene from an alien movie, but for many black Americans, it was reality.
From the era of American slavery and through more modern times, black people have been degraded, experimented on, and exploited by white Americans to achieve societal goals — including advancing medical knowledge. Some of the most important medical advancements made in the last few centuries, like drugs to treat diseases including polio and leukemia, came on the backs of black people, including many who were operated on without consent, not given anesthesia, or included in experiments they weren’t made aware of. Aside from the obvious horror of medical doctors — whom we entrust with the expert care of our bodies — violating one set of people for the benefit of another, these experiments had lasting impacts on the black community. Through coercion, exploitation, and lies, white health care workers controlled the black population, performed painful experiments on black people, created a persisting gap in the quality of care experienced by the black population, and more.
Black people being used as a foundation of the American medical system can be traced at least as far back as the need for medical cadavers as educational tools. In the 19th century, medical institutions including the University of Virginia hired people to dig up bodies from black cemeteries to address a shortage of medical cadavers. After the stolen bodies were used, they were discarded in undignified ways, like “dropping them in the city’s sewers, by shallow burial in vacant lots, by dumping them on city streets, or through their incineration with household garbage,” as archaeologist James M. Davidson wrote in a 2007 report published in the International Journal of Historical Archaeology.
White health care workers like James Marion Sims went on to violate and exploit living black people in a similar way during slavery. Sims was a famous surgeon in the mid-19th century who saw a need for advancement in women’s health. During this time, “the practice of examining the female organs was considered repugnant by doctors who were almost all males,” Durrenda Ojanuga wrote in 1993, in a paper published in the Journal of Medical Ethics. This would create an obvious problem when it came to medical care for women, making Sims’s dedication to developing solutions to common gynecological problems important. Sims did find many solutions, but his advancements came at the expense of black women.
Through brutal experiments on enslaved women, Sims developed the vaginal speculum as well as a technique to repair a common complication from childbirth. In fact, according to Ojanuga’s paper, Sims operated on one woman 13 times without anesthesia to perfect the repair of fistulas. He did get the surgery right, but few benefited from the brutal experimentation on black women — Sims didn’t seem to use anesthesia for any of his patients, black or white, and most, obviously, couldn’t deal with the pain. The legacy of Sims’s work lives on and advancements were made that have shaped modern gynecology. But it came on the backs of black women, who suffered surgeries without anesthesia or consent.
Decades after the abolition of slavery, in 1932, black men were tricked into participating in a syphilis study to aid in finding a cure for the disease but were unaware of how it would lead to their deaths. The Tuskegee Syphilis Study was conducted to see the effects of syphilis on the body and to aid in the creation of a drug that would cure the illness. In this experiment, 600 black men were initially enrolled and unknowingly injected with the disease (which at the time had no cure) and left untreated. The uninformed participants were only told by researchers that they had “bad blood” — they didn’t know they were being injected with a potentially fatal disease. Throughout the course of the experiment that lasted for 40 years, these men were misled and did not have the ability to give informed consent. Of those injected with the disease (some were given a placebo), 28 had died from syphilis by the time the experiment was uncovered in 1972. An additional 100 had died of related complications. The disease was passed on to spouses and children. Through the suffering of these black men, white health officials did learn the impact of syphilis on the body — in a horrific way. When men in the study died or became stricken with illnesses, researchers continued to ignore the need for care, and instead merely observed the effects of the disease on the body.
These black men were under the impression that they were receiving the health care they deserved. Instead, the study led to many of their deaths, and contributed to a lasting mistrust of medical professionals among black people.
Unlike The Tuskegee Syphilis Study, Henrietta Lacks was experimented on in a doctor-patient setting, not in the context of research. Lacks was a mother of five who entered The John Hopkins Hospital seeking care, but left without knowing that experiments would be conducted on her cells. In 1951, after suffering from vaginal bleeding, it was revealed that Lacks had cervical cancer, of which she died in the same year. Lacks traveled to the Johns Hopkins Hospital from Virginia because it was one of the few hospitals that would treat impoverished black Americans. Even then she was treated in a segregated ward. Not only did she not receive the same standard of care as white Americans, her white doctor sampled her cells during an exam without her consent.
Research soon revealed that Lacks’s cells had the ability to grow indefinitely, while other cells died fairly quickly, making them hard to conduct experiments on. The amazing capabilities of Lacks’s cells led her doctor, George Otto Gey, to steal them and employ them in research, calling them HeLa cells.
Lacks’s cells contributed to what Britannica described as “the development of drugs for numerous ailments, including polio, Parkinson’s disease, and leukemia.” They also led to “two Nobel Prizes in research, and the development of vaccines, cancer treatments, in vitro fertilization and a genome sequence,” according to the Washington Post. Her cells have been used in the understanding of toxins, hormones, and the effects of radiation. There are scientists around the world who are still using her cells to conduct ongoing research. As of 2018, there were 17,000 U.S patents that include HeLa Cells. The important trust between a patient and doctor was sacrificed to advance health care. Many people continue to benefit from this broken trust and the exploitation of Lacks’s body. Everybody, that is, except Lacks herself.
While George Gey was showered with awards for discovering the HeLa strain, Lacks’s family was unaware of the impact her cells were having on the world. They did not know that their mother’s cells were benefitting scientific research until 1973, when researchers called the family for additional samples. This inspired Lacks’s family to fight for compensation and to shed light on her story. Lacks’s eldest son, Lawrence Lacks, is currently fighting for the ownership rights of Lacks’s cells as well as restrictions on who can use them. In 2013, the National Institute of Health announced that it would allow two members of Lacks’s family to be on the panel that approves requests for the use of Lacks’s cells.
White health officials have not only controlled black women’s bodies with surgical precision, but their bloodlines too. Sterilization and birth control shots were widely forced on black women as a measure to control the population. In North Carolina, between the 1930s and 1970s, the majority of sterilization procedures were performed on black women. In fact, several states sponsored sterilization of black women with federally funded programs, something illustrated in the 1973 case of the Relf sisters. The Relf sisters were 12 and 14 years old when their mother, who was illiterate, signed an X on a piece of paper that she believed would authorize doctors to give the girls a birth control shot. Instead, the girls were forcibly sterilized. Their mother, with the help of the Southern Poverty Law Center, filed a lawsuit against the clinic that performed the procedure, which led to the exposure of widespread government-sponsored sterilization of poor people, and the ban on using federal funding to perform sterilizations without the patient’s consent. The Relf sisters weren’t the only victims of forced sterilization, but they are a prime example of black Americans being operated on without their consent.
Historically, reproduction is a form of power for women to have their own agency and freedom over their bodies. Restricting this freedom for black women was like enslaving them again, using sterilization as a weapon to prevent their agency over their bodies. This measure of control ultimately led to skepticism among black women about birth control, according to a 2000 article published in the journal Perspectives on Sexual and Reproductive Health. Some wondered whether it was the promise of freedom white women took it to be, or if it was an attempt at racial genocide.
All the while that black people were being used to improve the health care system, black Americans were still receiving unequal care. Jim Crow Laws segregated hospitals and restricted black people from entering the medical field, ultimately contributing to the systemic racism still present in the health care system. Black people were often treated predominantly by white doctors, who didn’t always provide equal care. Black hospitals were understaffed and had very few resources, resulting in preventable deaths. The unequal treatment black Americans received in the 1960s has continued into the 21st century.
The continuous mistreatment of black Americans and the racism rooted in our medical system defines the health risks experienced by black women and men today. A 2016 report by Cigna showed how black Americans experience significant disparities from white patients regarding chronic conditions, access to care, preventive screenings, and mental health. The Harvard School of Public Health’s winter 2019 issue of their magazine reported that black women are three to four times more likely to die during or after delivery than white women in the U.S. Black infants are often brought into this world without their mothers because of a health care system that is failing black mothers. It is a paradox that enslaved women were the foundation of women’s health care, but black women are still dying at the hands of their doctors. Black people are the step stool on which the health care system stands, a system that is currently insufficient for the well-being of the black population.
Our medical system needs to recognize how black people are the victims of its exploits and must strive to cut the thread, woven into modern history, of mistreating black Americans. Recognition looks like taking down the statue of James Marion Sims in Central Park, which happened in 2018. Recognition looks like returning the ownership of Lacks’s cells to her family. Recognition looks like honoring the Tuskegee men and compensating their families for having to live with syphilis for generations, which has also happened, though families of the men are still seeking leftover money from a $9 million settlement. Recognition is only the first step to improving the relationship between black Americans and the American health system. The ultimate goal is to improve the quality of care provided to black Americans.
