#DemandDiversity: Names erased from history: A dive into black history of clinical research

Over the course of the last few centuries, black contributions to research and medical history, along with historical bad treatment by the medical community, have been largely overlooked. This is your opportunity to learn about the mistreatment of ethnic minorities in clinical research, and the names that have been erased from our history books. We hope you’ll join us in learning and unpacking the history of our industries, and to see how it still has major relevance today.

The history of clinical trials

Clinical trials haven’t always been as regulated as they are now. Whilst the industry still has some lengths to go to improve diversity and inclusion in clinical trials today, they’re a lot better than they used to be. Many of clinical trials would not be allowed to take place today — there are now numerous regulations in place to make sure clinical trials uphold ethical practices, don’t contain needlessly painful procedures, and most importantly, don’t discriminate against ethnicity. And while clinical research has come leaps and bounds from where it used to be, that doesn’t mean the effects of the history of clinical trials have been erased. The Black community in particular still have large amounts of medical mistrust to this day.

And it’s clear why. Take a look at these 5 names you should be aware of in clinical research history:

Lucy and Anarcha

Lucy and Anarcha were two female African American slaves in the 1840’s and 50’s. They were two of many enslaved women who were subject to experimental surgeries conducted by James Marion Sims, who was attempting to perfect his techniques in removing vesicovaginal fistulas — tracts that extend between a women’s bladder and vagina, causing urine to be released into the vagina. The women in these experiments were never allowed to give informed consent.

Lucy underwent the first ever surgery, without anaesthesia, which caused her to contract blood poisoning so extreme that Sims noted in his medical diary “I thought she was going to die… it took Lucy two or three months to recover entirely from the effects of the operation.”

Anarcha was documented in Sims’ medical diary too, as she underwent the same surgery 30 times. Still, with no anaesthesia. At the time, some doctors didn’t trust anaesthesia and so decided not to use it. However, Sims’ decision to not use anaesthesia was not based on lack of trust, but on the misguided and racist belief that Black people did not experience pain in the same way white people did. This became obvious as after his experiments, Sims went on to treat white women with anaesthesia. To this day, Sims has been nicknamed the “father of modern gynaecology”, but you have to ask — at what cost?

The notion that Black people don’t experience pain in the same way as white people still persists today. For example, one study showed that up to half of white medical students and residents believed in differences in pain tolerance between white and Black people, leading to Black Americans being undertreated for pain relief when compared to white Americans.

Lucinda, and the network of slaves used for experimental research

James Marion Sims was far from the only medical researcher that conducted experiments on slaves. In an 1852 experiment, African American Lucinda was subject to experiments conducted by slave owner and physician, William Aiken of Winnsboro. Lucinda suffered with bony growths around her eye, and in an experimental approach to treat her, Aiken removed these growths without the use of anaesthesia.

Historians used to believe that such practice was isolated to a few specific physicians, however, it now appears that there was a widespread network of physicians and doctors carrying out experiments at the expense of African American slaves. Experimentation on enslaved patients was commonplace, and doctors from all across the American South carried out such experiments for decades.

Henrietta Lacks

Henrietta was an African American woman, who was being treated for cervical cancer in the late 1940’s. After receiving radiation therapy, Henrietta was sent home. She sadly died from the same cancer a few years later in 1951. However, that’s not where Henrietta’s story ends. Unknown to her, her doctors took a biopsy of her cervical tissue, and discovered that her cells were able to replicate in lab conditions. This was the first instance that scientists had seen cells that could be immortal, but they were obtained without Henrietta’s consent. Henrietta’s cells were immortalised, and the HeLa cell line (HeLa for [He]nrietta [La]cks) was produced.

The HeLa cell line has been used across countless ground-breaking medical discoveries and advancements, including the polio vaccine, gene mapping, cancer research, the list goes on. Her cells are still used today.

The cell line has generated billions of dollars, but Henrietta’s family have never seen this money. Only recently have the family been able to come to an agreement with the National Institute of Health — the Lacks family now have a say in which research studies can use the HeLa cells, and the family will be acknowledged by any researcher who uses the cell line in any publication.

It took 60 years for the Lacks family to have a say in the way Henrietta’s cells are used.

Grave robbing of Black slaves for clinical research

As medical research began to expand in the 18th century, cadavers were high in demand. Due to dissection being a punishment for criminals at the time, few people donated their bodies to research because of the associated negative connotations. For this reason, many students and suppliers of cadavers turned to grave robbing. As grave robbing became rife, only the rich were able to protect their graves. This, in combination with segregated burial sites, meant that Black bodies were often heavily targeted by grave robbers. History has been slow to acknowledge the extent to which the bodies of African Americans were used in medicine without consent.

More recently, in the summer of 1989, construction workers unearthed over 10,000 bones from a basement belonging to the Medical College of Georgia. Forensics quickly identified that these bones were there as a result of research conducted on cadavers that were taken from their graves, with many of the bones showing signs of dissection.

Tuskegee Scandal

The Tuskegee Scandal is one of the most recent and influential clinical trials that has negatively impacted ethnic minorities perceptions of clinical research. The study began in 1932, and involved the initial enrolment of 600 African American men, who were told they were being treated for “bad blood”.

However, the study was actually investigating the effects of Syphilis when left untreated. The people involved in this study were therefore unable to give fully informed consent and were actively neglected during the course of the trial. The standardised treatment for syphilis was penicillin, which was widely used by 1945. Yet, the researchers in this clinical trial actively withheld this treatment from these men, causing them to pass on syphilis to their partners and children throughout the duration of this trial. The participants were told the trial would last 6 months, yet the trial went on for 40 years and ended in 1972.

It goes without saying that this clinical trial has horrendously impacted the relationship between ethnic minorities and the pharmaceutical industry, and considerable efforts are needed from pharmaceutical companies to overcome this when recruiting people for clinical trials today.

Where does this leave us now?

Clinical research history is littered with examples of unethical and exploitative experiments, predominantly on ethnic minorities. This historical treatment of ethnic minorities has left relationships between these communities and the pharmaceutical industry in desperate need of repair.

There are huge amounts of medical mistrust as a result of all this mistreatment, which the industry must prioritise in correcting. If the issue of medical mistrust goes unresolved, health inequalities will continue to persist, and will likely increase as minority groups are left out of clinical trials. For example, in all of the Genome-Wide Association Studies used to find mutations linked to cancer, over 80% of participants have been of European descent. Changes need to be made, and these longstanding issues need to be addressed to rebuild the trust.

As science and medicine progresses, people from across all ethnic groups must be represented so that no one is left behind. We must work together as an industry to make sure that everyone is fairly represented in clinical trials, so that medicine can benefit us all equally.

This blog was originally published on Demand Diversity here.