"My mother would be so proud that her cells saved lives. She'd be horrified that Johns Hopkins profited while her family to this day has no rights."
-Lawrence Lacks, Henrietta Lacks’ eldest son
Lack of Bodily Autonomy: Henrietta Lacks
In 1951, Henrietta Lacks found herself being treated for an aggressive form of cervical cancer at Johns Hopkins Hospital. Unbeknownst to her and her family, the doctors had taken a sample of cells from her tumor and cultured them for further research. Henrietta, unfortunately, passed away from the disease within a year of her diagnosis. Amazingly, her cells continue to live on, reproducing indefinitely; a discovery that changed the medical field forever. However, Henrietta’s family was left in the dark for over two decades living in poverty while their mother’s cells were used to make billions of dollars in the medical field○. It was only once HeLa cells had mistakenly contaminated other samples and scientists needed a sample of their DNA, were they finally informed of the advancements their mother had made to the medical field. And it wasn’t until 2013 (over 60 years later) that the family was able to voice their opinions regarding the use of the cells, such as removing Henrietta’s genome from public use, only allowing them to be accessible only for those who apply and are granted permission, and receiving acknowledgment in any publications where the HeLa cells are used○. The rights of HeLa cells has still been a hard-fought battle as her eldest son, Lawrence Lacks, and executor of her estate was not involved in any decisions; he would like to set up a foundation through her estate that would allow scientist to benefit from the use of HeLa cells, but the cells to be owned by the family. To this day Henrietta’s family has received no compensation from Johns Hopkins for their family’s contribution to the medical field.
Henrietta’s HeLa cells are the first human living cell line, allowing for many medical breakthroughs such as learning the effects of zero gravity in space, studying AIDS and cancers, as well as developing the polio vaccine.○ Henrietta Lacks is now known as the Mother of Medicine, but her choice to make decisions over her own body was taken from her regardless of the good that came from it.
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Lack of Bodily Autonomy: Fannie lou hamer
Fannie Lou Hamer was a Civil Rights heroine that dedicated her life to Black life and liberation. In 1964, she organized Freedom Summer○, a voter registration drive aimed to increase the number of Black voters in Mississippi and fight against voter discrimination. The event was a huge success. Over 17,000 Black Mississippians attempted to register to vote and while only 1,2000 were successful, the event itself raised so much awareness around voter suppression that it was fundamental to the passing of both the Civil Rights Act of 1964 and the Voters Rights Act of 1965. Fannie Lou Hamer also ran a farming cooperative, Freedom Farms○, that worked to lessen the economic and food access burdens that Black communities faced while empowering their liberation.
However, Fannie Lou also moved through society as a Black woman and sterilizing those who were deemed “unfit” was a common practice especially in the South. This law was upheld by a 1927 Supreme Court decision. So in 1961 when Fannie Lou went to the hospital to have a tumor removed from her uterus, a hysterectomy (complete removal of the uterus, may also involve removal of the cervix, ovaries, Fallopian tubes, and other surrounding structures) was performed without her knowledge or consent. The medical industry’s complete control and discretion over the bodies of Black girls and women continued until 1981.
One of the most famous cases of Black exploitation in the medical field is the Tuskegee Experiment, a study that lasted 4 decades (1932–1972) observing Black men with syphilis throughout their lives to learn how the disease progressed. It was already known at the time that the disease began with sores and later down the line could cause stroke, blindness, deafness, loss of feeling in hands and joints, and fatality. But the theory was that the disease, if left untreated, would unfold differently in Black people.
Because the men living in the rural South worked laborious jobs, they participated in the study as it was both a form of respite as well as an unprecedented chance to receive healthcare; all of the men would be picked up together for their check-ups to treat their “bad blood” and have a chance to talk with friends and eat food provided by the experimenters.
The experiment continued long after the cure for syphilis (penicillin) was discovered in 1943 and was being widely used. Instead, these researchers continued the study knowing that these men were passing the disease to their wives and children (syphilis can be congenitally passed from mother to child in the womb).
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