![DISRUPTLogo-MedHorizontal[1].png](https://static.wixstatic.com/media/1ad237_0694e719fff24e1b99901c9a23a001c1~mv2.png/v1/fill/w_130,h_50,al_c,q_85,usm_0.66_1.00_0.01,enc_auto/DISRUPTLogo-MedHorizontal%5B1%5D.png)
Diversity & IncluSion in Research Underpinning Prevention & Therapy Trials
![DISRUPTLogo-MedHorizontal[1].png](https://static.wixstatic.com/media/1ad237_0694e719fff24e1b99901c9a23a001c1~mv2.png/v1/fill/w_500,h_200,al_c,q_85,usm_0.66_1.00_0.01,enc_auto/DISRUPTLogo-MedHorizontal%5B1%5D.png)
Diversity & Inclusion in Scientific Research Underpinning Prevention & Therapy Trials
Medical Mistrust
Medical mistrust is the lack of trust in the healthcare system and its providers. Those with medical mistrust do not believe that the healthcare system and its providers genuinely care for their interests, are being honest with them, and are providing them with the best possible care.
Medical mistrust is related to the mistreatments of the past and to people’s everyday experiences with discrimination in health care. This lack of trust prevents people from taking medical advice, keeping follow-up appointments, filling prescriptions, and joining clinical trials.
It’s understandable that people of color in the United States are suspicious of the medical establishment given prior abuses which were racially targeted. Below are just a few examples of past abuses.
Medical experiments on Black enslaved people:
Between 1619 when the first enslaved people were brought to the British Colony of Virginia until June 19, 1865, when the last slave was freed in the USA, Black people, especially Black women, endured violent medical treatment and experimentation against their will. During the 1800s and early 1900s, enslaved Black people’s bodies were further exploited in the US. Their bodies were stolen from their graves, cut up, and displayed as “anatomical material” to teach medical students
(Sources:
Dr. J. Marion Sims:
Dr. Sims, known as the “father of modern gynecology,” developed tools and surgical methods related to women’s reproductive health. Sims research was conducted on enslaved Black women without anesthesia. Critics say that Sims cared more about the experiments than treating patients. He caused untold suffering because he believed that Black people did not feel pain. After 4 years and 30 operations on one enslaved woman, a 17-year-old named Anarcha, he finally “perfected” his methods.
Involuntary sterilization:
In the early part of the 20th century, laws were passed forcing women to have their reproductive organs removed by force. These sterilizations were performed on women thought to be unfit to have children. American, African American, and Puerto Rican women were overwhelmingly targeted for this forced sterilization. These were called Eugenics laws. The first eugenics sterilization law was passed in Indiana in 1907, but these laws did not become popular until the 1920’s. An estimated 60,000 people were made incapable of having children over the next several decades. Eugenics laws targeted the poor, the disabled, and people in institutions and prisons, and were disproportionately used again people of color.
Tuskegee Experiment:
Another notable violation of medical ethics was the infamous US Public Health Service “Tuskegee Study of Untreated Syphilis in the Negro Male.” This 40-year study that began in 1932 and involved hundreds of Black men without their informed consent. Most of the men who took part in the study were poor sharecroppers from Macon County, Alabama, who labored for White farmers. The men were told they were being treated for “bad blood.” Penicillin treatments for syphilis, which became available in 1943, were withheld from these men and many died from the disease. The shocking revelations of the Tuskegee study in the 1970’s had a direct impact on the development of medical ethics and regulations to protect human participants in research. A class action suit was filed on behalf of the study participants and their families. A $10 million out-of-court settlement was reached in 1973. In 1997, President Bill Clinton issued a formal apology for this study.
(Sources: https://www.cdc.gov/tuskegee/timeline.htm); https://clintonwhitehouse4.archives.gov/New/Remarks/Fri/19970516-898.html)
Henrietta Lacks:
Henrietta Lacks was a Black woman and mother of five. She died in 1951, at the age of 31, of an aggressive cervical cancer. Months earlier, doctors at the Johns Hopkins Hospital in Baltimore, Maryland, had taken samples of her cancerous cells while diagnosing and treating her disease. This hospital was one of only a few that provided medical care to Black people. The doctors gave some of her tissue to a researcher without Lack’s consent or knowledge. In the laboratory, her cells turned out to have an extraordinary capacity to survive and reproduce; they were in essence “immortal.” The researcher shared them widely with other scientists, and they became a very important part of biological research. Today, her cells called HeLa cell, are used in modern medicine and they have been involved in key discoveries in many fields including cancer, immunology, and infectious disease. One of the most recent applications has been in research for COVID-19 vaccines. None of the companies and researchers who profited from her cells passed any money back to Lack’s family. And, for decades after her death, doctors and scientists never asked her family for consent to reveal her name publicly, give her medical records to the media, and publish her cells’ genome online. Henrietta’s descendants have filed a lawsuit in 2021 against ThermoFisher Scientific that has not yet been heard in court.
