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The Story of Henrietta Lacks

Henrietta Lacks was born Loretta Pleasant August 1st, 1920 in Roanoke, Virginia. When Henrietta was 4 years old her mother died and her father moved the family to Clover, Virginia where his children moved in with various relatives. Henrietta moved in with her maternal grandfather, Tommy, who lived in what had previously been the slave quarters on the plantation where their family had been enslaved. Her great-grandfather and great uncle were the plantation owners. She shared a room with a cousin and her future husband, Day Lacks. Like many others in her family, Henrietta started working the same Virginia tobacco fields her enslaved ancestors had worked from a very young age. At 14 she had her son Lawrence, and 18 her daughter Elsie (both fathered by Day). On April 10, 1941 Henrietta married Day Lacks and took his last name. They had 3 more children together (Sonny, Deborah, and Joseph). Henrietta loved to cook and she loved to dance with her children. She was stylish and wore red nail polish often. 

In 1950 her daughter Elsie was taken to the Hospital for the Negro Insane where she was diagnosed with “idiocy.” Elsie was abused, neglected, and experimented on involuntarily. She died 5 years later at the age of 15. After giving birth to her final child in 1951, Henrietta experienced severe hemorrhaging and was eventually found to have a cancerous mass in her cervix. While she was being treated, samples were taken from her cervix without her knowledge or consent. The cells stolen from her eventually became known as the HeLa immortal cell line. In August 1951, Henrietta was admitted to the hospital for severe abdominal pain where she remained until her death on October 4, 1951. She was buried in an unmarked grave, but headstones have since been dedicated to both Henrietta and Elsie by the Lacks family. None of the companies that profited from her cells ever passed money to the Lacks family. Even after her death scientists revealed Lacks’ name, medical records, and cell genome to the public without the prior knowledge or consent of her family. 

Sources:
https://www.nature.com/articles/d41586-020-02494-z
https://en.wikipedia.org/wiki/Henrietta_Lacks#Biography
https://www.thenewatlantis.com/publications/what-is-the-body-worth

The Tuskegee Experiment

Beginning in 1932, 600 Black men from Macon County, Alabama were recruited into what is now known as the Tuskegee experiment. It was called the “Tuskegee Study of Untreated Syphilis in the Negro Male” by the United States Public Health Service and the goal from the start was to observe the full progression of the disease. For many of the men involved, it was their first ever visit to the doctor. At the start of the study 339 of them had syphilis, and 201 did not. They were all told they had “bad blood” and that they would receive free health care for the next 6 months. Instead, they were monitored by health workers with physical examinations, x-rays, and spinal taps for the next 40 years. The entire time they were given only placebos like aspirin and mineral supplements. Whenever any one of the men without syphilis developed it, they were simply switched from the control group to the syphilis-positive group and monitoring continued. 

15 years into the experiment penicillin became the recommended treatment for syphilis. Rather than treat their subjects, the “researchers” at the United States Public Health Service ensured that they would not receive treatment anywhere. They provided Macon County doctors and the Alabama Health Department with lists of their subjects and asked them not to provide treatment. When many of the men involved were drafted, these “researchers” had them removed from the army rather than allow their syphilis to be uncovered & treated. USPHS opened several Rapid Treatment Centers specifically to treat syphilis with penicillin all while preventing these men from receiving the same treatments. These men slowly went blind or insane & experienced severe health problems until they died, all while being observed by health care workers who knew exactly how to treat their disease. 

Despite the Nuremburg Code and the Declaration of Helsinki being written and ethical concerns being raised about the “study”, both the USPHS and the Centers for Disease Control devised committees that reviewed & actively decided to continue it until as late as 1969. It wasn’t until information was leaked to the New York Times in 1972 that the Tuskegee experiment finally ended. Only 74 of the men were alive at that point. 128 died of syphilis or its complications, and the disease had been passed on to 40 of their wives and 19 of their children. 

This was not the only time the United States Public Health Service used human experimentation to study sexually transmitted diseases. The foundation for the Tuskegee experiment was laid by the Terre Haute prison experiments in 1943-44 and the syphilis experiments in Guatemala from 1946-48. These 3 studies shared researchers, goals, and methods, and they all preyed on marginalized groups in order to get away with these crimes against humanity. 

Sources:
https://www.history.com/news/the-infamous-40-year-tuskegee-study
https://www.mcgill.ca/oss/article/history/40-years-human-experimentation-america-tuskegee-study
https://en.wikipedia.org/wiki/Guatemala_syphilis_experiments
https://en.wikipedia.org/wiki/Terre_Haute_prison_experiments

The Mothers of Gynecology

In 1845 an American physician began conducting experiments on enslaved black women aiming to invent a technique to repair tears between the vagina and the bladder and/or rectum that occur as a result of a traumatic childbirth. Fistulas were common among enslaved women as a result of malnutrition and the young ages they often had children. These women would be in labor for days and give birth to a stillborn child, before suffering from terrible pain, infection and odor due to their fistula. It was at this point Sims would claim them as patients. 

There are 10 women we know of who were repeatedly forced into experimental operations. However, only 3 of their names were recorded: Anarcha, Betsy, and Lucy. No anesthetic was ever used despite it being available at the time. The women were forced to build a hospital and assist with each other’s surgeries as well as care for each other in between experiments. Lucy was 18 when she endured an hour-long surgery, naked and bent over on a table as she screamed. She almost died from blood poisoning and was extremely ill for 3 months after. Starting at age 17, Anarcha survived 30 agonizing failed surgeries. After 4 years of experimentation, the doctor “perfected” his technique enough to begin treating white women, with whom he always used anesthesia. The Black women went back to their lives on varying plantations and never got any credit or retribution for the torture they endured. 

Before and after these gynecological experiments, the same doctor experimented on enslaved black children. He believed that Black people were less intelligent than white people because their skulls grew too quickly around the brain, and so he used shoemakers’ tools to pry Black children’s bones apart. Despite these atrocities, he was lauded in historical and medical texts, and dozens of statues of him exist across the country to this day. 

Sources:
https://www.history.com/news/the-father-of-modern-gynecology-performed-shocking-experiments-on-slaves
https://prochoicemissouri.org/2020/03/02/remembering-anarcha-betsy-lucy-true-mothers-gynecology/
https://en.wikipedia.org/wiki/Anarcha_Westcott
https://en.wikipedia.org/wiki/Vesicovaginal_fistula
https://en.wikipedia.org/wiki/Rectovaginal_fistula