Image: Victims of the Tuskegee syphilis study. Courtesy of the National Archives.

Generally speaking, science is supposed to be the pursuit of truth and understanding through methodical, unbiased investigation.

Our understanding of the world as we know it would not be the same without science, and we depend on its fair and objective application to learn about the world we live in and improve everything from technology to treatments for disease.

But unfortunately, there have been many instances throughout history up to the present day where science has been misappropriated to propagate ideas that have no basis in fact, such as the pseudoscience that has helped perpetuate scientific racism.

The relationship between science and the Black community is rife with exploitation, abuse and trauma. While these things may be difficult to discuss, it is important to acknowledge how these historical events have shaped the society we live in today and how they created a very justified lack of trust and lack of true scientific partnerships between scientists and Black, Indigenous and People of Color (BIPOC) individuals. This has also contributed to an underrepresentation of BIPOC individuals in research studies, which limits the applicability of findings and results in missed opportunities to provide personalized care, resulting in poorer medicine and outcomes overall for BIPOC individuals.

The Massachusetts General Hospital Community Access Recruitment and Engagement (CARE) Research Center was established within the Division of Clinical Research to increase research engagement, recruitment and retention of individuals from diverse ethnic and socio-economic backgrounds. Basing their mission around community-based partnerships across all aspects of clinical trial design, the CARE Research Center believes that this framework is the foundation for health equity.

Led by Jonathan Jackson, PhD, the CARE Research Center has been working to repair the damage done by years of racially-based scientific exploitation through research projects, clinical trial consultations, community-based partnerships and education. Part of that process includes taking an unblinking look at the past.

Developed for social media by Helen Hemley, the CARE Research Center recently shared a thread on their Twitter account highlighting a series of high profile scientific atrocities committed against the African-American community, and we thought it important to share with both the scientific and broader community.

The Pro-Slavery Pseudoscience of Dr. Samuel A. Cartwright

Dr. Cartwright was a Louisiana and Mississippi-based physician and slavery advocate who practiced medicine in the mid-1800s. He is mostly widely known for coining the term “drapetomania,” an alleged mental illness he created to explain why enslaved Black people tried to escape or resist captivity. He also invented “dysaesthesia aethiopica,” a disorder that was the supposed cause of laziness among enslaved people.

Cartwright’s supposed treatments for drapetomania and dysaesthesia aethiopica involved grueling labor, physical abuse and sometimes mutilation. Both “disorders” are now debunked and recognized as pseudoscience, but the theories remained popular into the early 1900s and remain at the heart of white supremacy and many health disparities we see today due to internalized, though untrue, beliefs of genetic differences between Black and white people that are based on Cartwright’s establishment of modern scientific racism.

The “Tuskegee Study of Untreated Syphilis in the Negro Male”

The Unites States Public Health Service (USPHS) conducted the notorious Tuskegee Experiment from 1932 until 1972 to observe the progression of untreated syphilis in African-American subjects. The USPHS partnered with Tuskegee University to enroll 600 African-American men — 399 with syphilis and 201 who were syphilis-free. Victims of the study were never told they were part of the study, but were promised free medical exams, meals and burial insurance for regular interaction with the study.

Participants, who were mostly poor sharecroppers with little history of medical care, were told they were being treated for “bad blood.” The true nature of the study was never disclosed, nor were the subjects with syphilis informed of their diagnosis. While there were no treatments for syphilis when the study began, participants were still denied access to treatment after penicillin was discovered as an effective treatment in 1945. Participants were often stopped from receiving external medical care if they sought it out.

The study was intended to take place for six months, but instead went on for 40 years. The study was not hidden, as regular reports were published by the study teams, but became widespread knowledge in 1972, over 500 of the original participants had died and some had unknowingly passed syphilis on to their wives and children.

Henrietta Lacks and the Discovery of HeLa Cells

Henrietta Lacks was an African American women who visited Johns Hopkins Hospital in 1951 for treatment of a malignant tumor on her cervix. Without her consent or the consent of her family, Dr. George Otto Gey harvested a biopsy of the cancerous tumor and found the cells to have a unique property with big scientific implications.

Unlike other cells he had cultured, Lacks’ cells could survive and divide indefinitely, which is why they became known as “immortal” cells. The rapid and continuous replication of cells gave scientists the time they needed to conduct numerous experiments on the same cell samples without the cells dying. Prior to the discovery of HeLa cells, experiments had to be repeated using cells from other individuals, which limited the applicability of the results.

The cells, named HeLa cells, were used in research for 20 years before her family was made aware that they had been taken. Her cells have been used for groundbreaking medical advances such as the polio vaccine, the study of leukemia, AIDS and more. To this day her descendants are still fighting for control over and compensation for the use of Henrietta Lacks’ cells and identifying information of the Lacks’ family has been published by scientists using the cells as recently as 2013.

Ebb Cade and the Plutonium Files

The Manhattan Project was a government-run research initiative dedicated to building nuclear weapons and understanding the effects of radiation on the human body. In 1945, an African-American man named Ebb Cade was on his way to work when he got into a car accident and broke several bones.

He was transported to a Manhattan Project Army Hospital in Oak Ridge, Tennessee, where he was subsequently injected with almost five times the suggested amount of plutonium — a radioactive chemical used in atomic bombs — against his will. Physicians waited several days before setting his bones so they could retrieve a bone biopsy, and also extracted 15 of his teeth for examination before he escaped.

Modern Scientific Racism

The events above were not as long ago as some may like to believe, and while racism in science may not be as front and center today, it does still exist.

In 2005, a scientist by the name of Bruce T. Lahn, PhD, from the University of Chicago published a study in Science that suggested a certain variant of a gene called Microcephalin (MCPH1) was responsible for increased brain size and intelligence, and that this gene was rare in the primarily Black population of sub-Saharan Africa.

Lahn’s work made headlines, and those with racist beliefs interpreted the findings as scientific “evidence” that Black people were intellectually inferior to others, even though many scientists found several flaws and criticized his work.

Another recent example of scientific racism came from J. Phillipe Rushton in 2012, when he published a controversial review in Personality and Individual Differences.

Rushton, who had a long history of publishing provocative research on race, intelligence and crime, hypothesized that darker skin in humans was associated with increased aggression and sexuality due to a similar pattern in animals. The review was widely criticized, but remained in the journal until June 2020 when Elsevier decided to retract it.

From Exploitation to Exclusion

However, scientific racism is not only the direct abuse, exploitation or disparagement of BIPOC individuals. It is also the exclusion of these individuals from scientific studies.

There are many research studies in which the study participants do not accurately represent the most affected groups in real life, which is a current concern in COVID-19 studies. Additionally, most publicly available genetic data belongs to participants of European ancestry, making the studies using their data less accurate for non-European individuals.

That’s why the CARE Research Center is working to improve representation among underrepresented groups in clinical trials, including racial and ethnic minorities, LGBTQ+ groups, rural populations and individuals of low socioeconomic status.

CARE aims to change how clinical trials are conducted by actively partnering with the community. Involving them in the process from the beginning and creating true bidirectional partnerships could open up new opportunities for more diverse research participation in Boston, which will ultimately improve the validity of life-saving research related to a range of diseases and disorders.

Next: Black Leaders Who Rose Above Racism and Made a Lasting Impact

The history between science and Black communities is not a pleasant one, but it is also critical to recognize Black scientists who worked against the odds to change the course of science and made lasting impacts. Stay tuned for our next post highlighting some of these leaders, their advocacy work and their accomplishments.