Its Sunday and we’re doing a long thread on past medical abuses against Black communities to try to help science Twitter understand why “trust” is not the goal – the goal is empowerment. #blacklivesmatterinhealthtoo
When we talk about representation of Black folks in #clinicalresearch, the term “trust” is often used. “Trust” is too big a barrier and it can easily go away. The feeling is, “We’ve tried, but it’s too hard.”
But leaving communities out of advances in medicine is not the answer – we’re seeing the deadly results of this in #COVID19. But, still, we need to talk about why there is a lack of trust and why that is deserved. theatlantic.com/ideas/archive/…
Let’s use @egaly’s often requested talk about past medical abuses in research against Black communities to dive deep into the harms that medical and research communities have committed to understand why trust is so, rightfully, hard to earn. Tuskegee alone is not the answer. 
We must understand the history of #healthdisparities to contextualize them in the present. In the mid-1800s, Samuel Cartwright wrote scientific articles that claimed that Black brains were so primitive that Blacks could not survive without being cared for by Whites.
Cartwright coined the disease “drapetomania”, a so-called mental illness that drove Black slaves to flee captivity. He also came up w/ “dysaethesia aethiopica,” another invented disease that described Blacks as mentally unstable, lazy, disobedient, diseased creatures.
The most effective treatment for these maladies was excessively hard outdoor labor, beatings, and sometimes cutting off the big toes of each foot. It’s much harder to fight racism when it claims to be something scientific. This continues to happen today. slate.com/news-and-polit…
Dr. Cartwright though syphilis would be harmless to Blacks. This leads us to the Tuskegee Syphilis Study. The side of privilege can’t understand the side of suffering, so they invent ridiculous reasons to justify differences. If no one tells them, nothing changes.
In 1932, the U.S. Public Health Service began the Study of Syphilis in the Untreated Negro Male. For 40 years, the federal government monitored 399 Black men who already had syphilis. At no point was syphilis given to these men.
The gov't watched as Black men lived w/ and spread syphilis to others, including at least 40 wives & 19 children. The victims weren't told they were being studied on the basis of their syphilis, or that they had syphilis. Or that they were being studied. washingtonpost.com/news/retropoli…
The US Public Health Service said they were giving free healthcare to poor sharecroppers in AL. Autopsy reports showed that between 1/3 and half of the deaths of these men were attributable to syphilis. The study wasn't hidden from view; researchers published findings every year.
Calls for the study to end began in 1965, as part of the civil rights movement, but were largely ignored until July 1972, when Jean Heller, broke the story with the Washington Star. The study was shut down within weeks. nytimes.com/1972/07/26/arc…
Now let’s move to Henrietta Lacks, who went in for cervical cancer treatment in February 1951 at Johns Hopkins University, where her cells were harvested without her permission by George Gey. rebeccaskloot.com/the-immortal-l…
After Ms. Lacks' death in October 1951, without the permission or knowledge of anyone in the Lacks family, Gey directed his assistant to harvest more of her cells while her body was at the Hopkins autopsy facility.
These cells, called the HeLa cell line after Ms. Lacks, revolutionized biology and medicine, from polio to cancer to AIDS to stem cell therapies. Neither Ms. Lacks nor her family have benefited from this work. lacksfamily.net/index.php
In the 1970s, when the cells became contaminated, the Lacks family was bombarded by requests from the scientific community to provide new samples. This was how they learned that Lacks’ cells had been harvested, more than 20 years earlier.
In the 1980s, the Lacks’ family medical records were publicly published, w/o the family’s knowledge or consent. And over decades, federal rulings have shut them out from any proceeds made from Lacks’ genes. There have been 10,000+ patents associated with the HeLa cell line.
In 2013, a group of German researchers published the entire genome of Ms. Lacks’ cells, which contained identifying information from living members of Lacks family. npr.org/sections/healt…
Next topic: James Marion Sims. White women benefited from Sims’ work, while Black women suffered. Watch the video to learn more - taking down his statue in Central Park does not alone erase his harm.
Now for some less-known atrocities. In 1927, hospital workers in Lyles Station, Indiana, exposed the heads of 10 Black children to radiation in order to study its effects. The children and their families were told the doctors were treating ringworm, which was a lie.
Every single child was horrifically disfigured, and most were socially isolated, despite wearing hats and wigs to cover up their injuries. Vertus Hardiman was 5 when this happened to him. holeinthehead.com/vertus-hardima…
Mr. Hardiman’s skull bones dissolved over the course of his life, resulting in exposed brain tissue & agonizing pain. He went on to work for a hospital for 40 years, never missing a day of work. Despite his suffering, he told no one, and kept his head covered, for over 70 years.
Think about the great cost of that silence. How it didn’t stop the same thing from happening to Black children around the US for more than 4 decades afterwards. By this time parallel human research protections had been put in place by the AMA & AEC.
Have you ever called someone an idiot, a moron, or an imbecile? These are medical terms, originally used to describe the Black resistance in the early part of the 20th century, especially Black war veterans who anchored early civil rights movements.
By being an “idiot” or a “moron,” an individual, often Black, could be forced to undergo institutionalization or sterilization. These medical terms were used to destabilize early activist efforts. aaihs.org/black-protest-…
In 1945, Ebb Cade, a trucker from NC, was involved in a car accident at the nuclear reactor where he worked. He was severely injured. W/o his knowledge, his consent, before setting any broken bones, Mr. Cade was injected with 41 times the normal lifetime exposure of plutonium-239
They pulled 15 teeth from Mr. Cade, took bone samples, and waited somewhere between 5 & 20 days before setting his broken bones. They renamed him HP-12: Human Product 12. archive.nytimes.com/www.nytimes.co…
He remained in the hospital for 6 months before escaping. Doctors were disappointed, as they had hoped to trigger several different types of cancer in Mr. Cade’s body before he died.
Between 1960 & 1971, Eugene Saenger, at Cincinnati General Hospital, exposed 150 Blacks to high doses of radiation to study its effects. Participant consent documents were forged. 84 victims died within weeks. brooklynrail.org/2002/10/expres…
After Tuskegee, the Belmont Commission was created. It was clear that people of color suffered disproportionately from the lack of oversight, faced coercion and bullying, & had no channel with which to register concerns.
These principles guide every aspect of human research to this day, and the way the story goes, it put a swift end to medical abuses. Yet, these things still happen even after human research protections were put into place.
In 1990, the CDC injected 1,500 Black and Hispanic babies in LA w/ an experimental measles vaccine associated w/ an increased mortality rate in children in 3 other countries. The parents weren't told that the vaccine was still in the investigational phase latimes.com/archives/la-xp…
In 1997, researchers at Columbia University administered fenfluramine to 126 Black boys under the age of 10, breaching juvenile court records in the name of health. deseret.com/1998/4/18/1937…
This study was targeted at children of color, specifying in an approved IRB protocol that Whites were not eligible. The assumption was that race was the primary risk factor for male aggression. We’re still studying just how bad the effects of fenfluramine were on these kids.
There is danger in abuse by medical researchers, but there is also harm by using “trust” as a way to ignore Black communities in research.
Look at #COVID19 deaths in MA. Comparing deaths from the first months of 2020 to the last 5 shows a huge uptick in mortality rates. When broken down by neighborhood, the variability between the part of Boston that's 6% Black vs 60% Black is staggering hsph.harvard.edu/social-and-beh…
Though the Belmont Report has helped prevent abuses, it hasn't solved the problem of justice. It was made clear that BIPOC were to be treated w/ different rules, which meant that many medical researchers either didn’t know how to reach Black communities, or didn’t care to try.
Again, the power imbalance must be resolved, because trust is too hard to gain and too easy to lose. This history is why words w/out accountable action, ring hollow coming from a healthcare system that says it stands in solidarity with @Blklivesmatter & protests across the nation
So, what will you commit to do to empower Black voices and experiences in research, healthcare, and medicine – what will you write, say and do? Not just today when it's convenient. But every day moving forward.
