Blog #43: Stem Cells and More: Contributions from, and abuse of, Black Patients
The Tuskegee syphilis study (Blog #42) is just one reason why people of color have indicated wariness of the medical establishment. As Dr. Zia Okocha wrote, “trust is hard-earned in a system that has historically utilized Black lives and bodies to advance medical knowledge and consistently fails at improving health disparities for Black people.”
The case of Henrietta Lacks deepens such mistrust. When Lacks sought treatment for cervical cancer at Johns Hopkins, cell biologist George Gey found her cells unique – they were incredibly hearty and doubled in number every 20 to 24 hours. Though Ms. Lacks died, “HeLa cells” lived and led to breakthroughs regarding polio, the AIDS virus, leukemia and other cancers. Years later, her family was surprised to find that Henrietta’s cells were used without her permission or theirs.
Ethical reforms followed regarding informed consent, the privacy of medical records, and communication guidelines dealing with tissue donors and research participants. Hopkins named a lecture series and a building after her. Paintings of her hang in the Smithsonian and in Baltimore City Hall.
But the legacy of disregard and abuse of black bodies cannot be erased by recognition alone. Mainstream society still minimizes the transgressions. George Washington had dentures made using the teeth of enslaved people, yet the Mt. Vernon website excuses it saying “[w]hile it may seem particularly gruesome, a perfectly acceptable means of making money was by selling teeth to dentists.” [emphasis added] The enslaved humans were “paid,” but what real choice did they have? What choice did those enslaved by Thomas Jefferson have when they were injected with cowpox as an experiment? And obviously the bodies of enslaved Blacks, dead and buried, had no choice about being dug up for dissection by budding physicians, a common practice.
In the mid 1800’s, Dr. James Marion Sims - considered by many to be the "father of gynecology" - did exploratory vaginal surgeries on enslaved Black women without anesthetic. He probably accepted the common myth within medicine that Black people felt less pain. He blamed enslaved people for their own medical challenges – they were sick, he said, because they were lazy. Believing that Black people were ignorant due to their skulls restricting their brain growth, he would pry children’s skull bones apart using a shoemaker’s tool. Many of them died at the hands of someone who swore to “do no harm.”
Lesson #219: The distrust of the medical establishment by people of color due to past abuse is well documented. So too is the negative health impacts this has on Blacks and other racial minorities.
Lesson #220: One estimate is that if you put all the cells grown from those taken from Henrietta Lacks together, “it would outweigh 100 Empire State Buildings and could circle the equator three times.”
Lesson #221: Two members of the Lacks family were added to the NIH committee overseeing the use of HeLa cells.
Lesson #222: While the Mt. Vernon website might call and poor people selling their teeth “perfectly acceptable,” today thousands of people sell parts of their bodies because it’s one of the only ways they can survive. Is this also “perfectly acceptable?"
Lesson #223: Some authors denounce criticism of Dr. Sims (see “The medical ethics of Dr. J. Marion Sims,” by L. L. Wall.) Wall contends that “[i]t is difficult to make fair assessments of the medical ethics of past practitioners from a distant vantage point in a society that has moved in a different direction, developed different values, and has wrestled—often unsuccessfully—with ethical issues of sex, race, gender, and class that were not perceived as problematic by those who lived during an earlier period of history.” It may be difficult, but personally I don’t accept the fact that ethical issues “were not perceived as problematic” at the time to be much of an ethical defense.
Lesson #224: Dr. Max Romano, a member of the Baltimore Ethical Society, notes that many elements of racism are imbedded in the education and training of medical professionals. He writes, "White physicians have an opportunity to acknowledge the unearned racial privilege that benefited their careers and actively work to dismantle the systems that propagate racism in medicine. I challenge other white physicians to speak out against the racism we have all benefited from and to work towards racial justice in our medical system for our colleagues and our patients."