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Black Lives & Racism in Medical Research and Care

While the country mourns the death of George Floyd and many call for radical changes in policing, we are hearing how structural racism has caused Covid-19 to devastate black communities. Last weekend I was at a Black Lives Matter event and saw this sign: Racism is a Public Health Crisis. It has been ever thus, starting before the United States even existed. Racism affects many aspects of people’s health, including medical research and care.

The first enslaved Africans brought to Jamestown in 1619 were not thought of as fully human. Even in the 19th century, there was almost no medical care for the enslaved. They might get bled, purged, or overdosed with quack remedies by their enslavers. White physicians didn’t want to treat black patients or, if they did, they sometimes exploited them. A famous exemplar is Dr. J. Marion Sims, lionized to this day as “the father of modern gynecology”. He performed experimental surgeries on enslaved women in an effort to figure out how to fix fistula, a tear between the vagina and bladder that led to incontinence and social rejection. The women essentially became his property while in his care, leading him to write: “There was never a time that I could not, at any day, have had a subject for operation.”

One of his subjects was Lucy, an 18-year-old who developed a fistula while giving birth. Sims wrote that Lucy wanted him to help her, as her condition caused her huge distress. We have no record of her wishes or her words aside from his report. Because she was enslaved, Lucy had no ability to give consent. For her surgery, done in late 1845, he had her be naked. She screamed in pain while Sims did the experimental surgery without anesthesia and nearly a dozen (male) doctors observed. Sims remarked, “Lucy’s agony was extreme.” Because of the surgery, Lucy contracted blood poisoning. “I thought she was going to die,” Sims wrote.

After many failed surgeries on enslaved women, Sims did learn how to repair fistula. He has been lauded for this important breakthrough ever since. There’s a heated and ongoing debate about whether the end justified the means, so to speak. In the Journal of Medical Ethics, L. L. Wall argued that Lucy and the other enslaved women expressed consent to experimental surgery by failing to resist. “Sims could not have carried out these operations successfully without the cooperation of the women involved. Even the slightest movement, much less the active resistance of these patients, would have rendered it impossible for him to have completed his operative procedures.” That sounds a lot like old, tired, and offensive thinking about rape—if the victim didn’t fight vigorously, then she or he consented. But imagine a man holding a scalpel over your naked genitals. Imagine your body is legally and in every other way not your own. I’m shocked that Wall was able to publish his comments a mere 12 years ago in a peer-reviewed journal.

Long after Sims died, when medical researchers wanted experimental subjects, they found it easy to go to prisons and poor neighborhoods. The Tuskegee syphilis experiment that exploited black men for forty years eroded trust that may never be regained. Unfortunately, the exploitation did not end when Tuskegee was finally reviled by the American public in the early 1970s. Two decades later, a mother in Brooklyn found representatives from Columbia University at her door, asking to take her 6-year-old son Isaac to their hospital for testing and a dose of medication. The stated reason was to assess him for health problems. The incentive was $100 and a Toys “R” Us gift certificate. The mother reluctantly agreed, and later learned that Columbia was doing research on a hypothesized link between genetics and violence. Researchers were trolling for black children and for parents they could interview to look for “parental psychopathology”. The drug in question was dangerous and not approved for children; it was one of the famous “Fen-Phen” drugs banned by the FDA a handful of years later because it damaged heart valves and killed patients. How had the researchers found young Isaac? The criminal justice system, which had Isaac’s older brother in its control. The study was later exposed for race-based exploitation, and Isaac’s mother was able to tell her story to a Congressional committee. She had felt coerced, fearing that if she said no to the researchers, her older son would suffer. The damage done by this sort of unethical study is deeply toxic to trust between black people and the medical care system.

Black physicians are uniquely positioned to build trust with their patients. Back in the earlier days of medicine, when black students managed to overcome a sea of obstacles to become physicians, they were excluded from the American Medical Association, as well as from countless state and local professional organizations. The exclusion wasn’t only from a membership organization; it meant exclusion from new research findings and information crucial to treating patients. Black physicians were also barred from treating patients in many hospitals. The AMA finally apologized for its racist policies a mere eight years ago.

White physicians have been shown to treat black patients differently from white patients. It isn’t only a matter of offering them less than the standard of care at times and attending less to their physical pain, deficits many in the profession are working to remedy. It’s also that they don’t communicate with them the same ways they communicate with their white patients. A study revealed that white doctors talking to black patients slow down their speech, dominate the conversation, spend less time on social-emotional concerns, stand farther away, touch less, and make less eye contract. Black patients have, not surprisingly, reported feeling patronized and mistrustful.

Like most people, doctors are affected by unconscious bias, which is arguably harder to remedy than the race-based disparities in care we can try to remediate. (If you want to explore your unconscious bias, there’s an anonymous way to do it – Harvard University’s Project Implicit. You can take implicit bias tests on a range of topics, including gender, sexuality, weapons, disability, religion, weight, age, and … yes, race and skin color. Here’s the link:

I predict that, like me, you will be humbled by your test results.)

And then came Covid-19. We now know that black (and other non-white groups of) Americans have sickened and died at a shockingly disproportionate rate. Black people are more likely to be essential workers, risking their lives for those of us who are not. We are learning new information daily, including that mobile testing sites were often disproportionately placed in white neighborhoods even when black neighborhoods had more cases and risk factors.

Some say if we monitor research and care disparities and understand what causes them, we can fix things. Others say we need to educate medical students and doctors – the elixir of awareness. These things can help, but our institutions are old and the scars of racism are old and deep as well. To understand the scope of the problem, I recommend Harriet A. Washington’s brilliantly researched book, Medical Apartheid, where I found the story of young Isaac. The voices and expertise of black Americans are integral to building a medical research and care system that meets their needs and in which they can place their trust.


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