There’s a dark side to medicine that involves the literal use of Black people.
This is Race and Medicine, a series dedicated to unearthing the uncomfortable and sometimes life threatening truth about racism in healthcare. By highlighting the experiences of Black people and honoring their health journeys, we look to a future where medical racism is a thing of the past.
Medical advances save lives and improve quality of life, but many of them have come at a high cost. There’s a dark side to medical advances — one that includes the literal use of Black people.
This dark history has reduced Black people to test subjects: bodies void of humanity.
Not only has racism fueled many modern medical advances, it continues to play a role in preventing Black people from seeking and receiving appropriate medical attention.
The women, considered the property of enslavers, were not permitted to give consent. Further, it was believed that Black people did not feel pain, and this myth continues to restrict Black people’s access to proper medical treatment.
The names of the Black women we know of who endured torturous experimentation at the hands of Sims are Lucy, Anarcha, and Betsey. They were taken to Sims by enslavers who were focused on increasing their production yields.
This included the reproduction of enslaved people.
Anarcha was 17 years old and had gone through a difficult 3-day labor and stillbirth. After 30 surgeries with nothing but opium to ease her pain, Sims perfected his gynecological technique.
An etymologist, Christina was researching the origin of “anarchy” and came across Anarcha’s name with an asterisk.
Upon further research, Christina found that Anarcha was used in terrible experiments to aid in Sims’ scientific discoveries. While statues honor his legacy, Anarcha is a footnote.
The Tuskegee Study of Untreated Syphilis in the Negro Male, commonly referred to as
It involved about 600 Black men from Alabama who were between ages 25 and 60 and experiencing poverty.
The study included 400 Black men with untreated syphilis and around 200 who didn’t have the disease to act as a control group.
They were all told they were being treated for “bad blood” for 6 months. The study involved X-rays, blood tests, and painful spinal taps.
When participation waned, the researchers started providing transportation and hot meals, exploiting the participants’ lack of resources.
In 1947, penicillin was shown to be effective in the treatment of syphilis, but it wasn’t administered to the men in the study. Instead, researchers were studying the progression of syphilis, allowing the men to become ill and die.
In addition to not providing treatment, the researchers went to great lengths to ensure that the participants weren’t treated by other parties.
The study was only ended in 1972 when the Associated Press, tipped off by Peter Buxton, reported on it.
The tragedy of the Tuskegee study didn’t end there.
Many of the men in the study died from syphilis and related illnesses. The study also affected women and children as the disease spread. In an out-of-court settlement, men who survived the study and the families of those who died received $10 million.
This study is just one example of why Black people are less likely to seek medical care or participate in research.
Due in part to The Tuskegee Study, the National Research Act was passed in 1974 and the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research was established.
Regulations were also put in place requiring informed consent from participants in research funded by the Department of Health, Education, and Welfare.
This involves complete explanations of procedures, alternatives, risks, and benefits so that people can ask questions and freely decide whether or not they’ll participate.
The Commission released the Belmont Report after years of work. It includes ethical principles for guiding human research. These include respect for persons, maximization of benefits, minimization of harm, and equal treatment.
It also highlights three requirements of informed consent: information, comprehension, and voluntariness.
Henrietta Lacks, a 31-year-old Black woman, was diagnosed with and unsuccessfully treated for cervical cancer in 1951.
Doctors preserved sample tissue from the tumor without consent from Lacks or her family. Informed consent didn’t exist at the time.
The cancer cells they took from Lacks were the first to grow in the lab and culture without end. They grew quickly, and soon became known as HeLa.
Today, almost 70 years after Lacks’ death, millions of her cells live on.
While Lacks’ 5 young children were left without their mother and without compensation for what were valuable cells, millions of people benefited from Lacks’ unwitting contribution. They only found out that Lacks’ cells were being used when researchers requested DNA samples from them in 1973.
Living in poverty, the Lacks’ family was upset to learn that Henrietta’s cells had been used to make billions of dollars without their knowledge or consent.
They wanted to know more about their mother — but their questions went unanswered, and they were dismissed by researchers who only wanted to advance their own work.
The cells, considered immortal, were used in over 70,000 medical studies and played a significant role in medical advances, including the treatment of cancer, in vitro fertilization (IVF), and vaccines for polio and human papillomavirus (HPV).
Dr. Howard Jones and Dr. Georgeanna Jones used what they learned from observation of Lacks’ cells to practice in vitro fertilization. Dr. Jones is
In 2013, Lacks’ genome was sequenced and made public. This was done without her family’s consent and constituted a privacy violation.
The information was hidden from public view and the National Institutes of Health later engaged the Lacks’ family and came to an agreement on the use of data, deciding it would be available on a controlled-access database.
Sickle cell disease is more commonly diagnosed in Black people and cystic fibrosis is more commonly diagnosed in white people.
Sickle cell disease is a group of inherited blood disorders that causes the red blood cells to be shaped like crescent moons instead of discs. Cystic fibrosis is an inherited condition that damages the respiratory and digestive systems, causing mucus buildup in organs.
People with sickle cell are often stigmatized as drug seeking because the recommended treatment for their pain is associated with addiction.
The pulmonary exacerbation, or scarring, associated with cystic fibrosis is treated as less suspicious than pain caused by sickle cell disease.
Studies have also suggested that sickle cell patients wait 25–50 percent longer to be seen in the emergency department.
Dismissal of Black pain has continued through the centuries, and people with sickle cell disease are experiencing this form of systemic racism regularly.
The severe undertreatment of Black patients’ pain has been connected to false beliefs. In a 2016 study, half of a sample of 222 white medical students said they believed Black people have thicker skin than white people.
In September 2020, a nurse reported that Immigration and Customs Enforcement (ICE) was ordering unnecessary hysterectomies on women in a Georgia detention center.
Forced sterilization is reproductive injustice, a violation of human rights, and considered a form of torture by the United Nations.
Forced sterilization is a practice of eugenics and an assertion of control. It’s estimated that more than
Fannie Lou Hamer was one of the people affected in 1961 when she went to a hospital in Mississippi, presumably to have a uterine tumor removed. The surgeon removed her uterus without her knowledge and Hamer only found out when the rumor spread across the plantation where she was a sharecropper.
This kind of medical violation was intended to control the African American population. It was such a common occurrence that it was dubbed the “Mississippi appendectomy.”
From experimental studies to denying people autonomy over their own bodies, systemic racism has negatively impacted Black people and other people of color while serving other agendas.
Individual white people as well as white supremacy as a whole continue to benefit from the objectification and denigration of Black people, and it’s important to call attention to these instances and the issues at the root of them.
Unconscious bias and racism needs to be addressed, and systems need to be put in place to prevent people in positions of power from manipulating people and circumstances in service to their own advancement.
Past atrocities need to be acknowledged and current issues need to be addressed in substantive ways to ensure there’s equal access to healthcare and medical treatment. This includes pain reduction, opportunities to participate in studies, and access to vaccines.
Equity in medicine requires specific attention to marginalized groups including Black people, indigenous people, and people of color.
Strict adherence to the informed consent requirement, implementing protocol to counteract racism and unconscious bias, and developing more appropriate standards for funding research on life-threatening diseases are critical.
Everyone deserves care — and no one should be sacrificed for it. Make medical advances, but do no harm.
Alicia A. Wallace is a queer Black feminist, women’s human rights defender, and writer. She’s passionate about social justice and community building. She enjoys cooking, baking, gardening, traveling, and talking to everyone and no one at the same time on Twitter.