Sept is Sickle Cell Awareness Month!

African Americans and Clinical Studies

African Americans are typically underrepresented in clinical studies, which means that the medical world is lacking information that could be helpful in finding the next treatment or cure.

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1845-1849

James Marion Sims and Experiments on Slaves

Dr. J. Marion Sims, the “father of modern gynecology,” was the first surgeon to successfully fix vesicovaginal fistula, a complication of childbirth. But he did so by experimenting on black women; buying or renting slaves with the condition from their owners. He conducted several surgical procedures on 12 enslaved women without giving them anesthesia. Because they were slaves, the women were unable to refuse the repeated surgeries.
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1932

“Tuskegee Study of Untreated Syphilis in the Negro Male”

The U.S. Public Health Service offered African American men free medical care, hot lunches, transportation to and from hospitals, and burials for their participation in a syphilis study. Out of the roughly 400 participants who had syphilis, 200 were left untreated – all while they believed they were receiving medical care. This is because the researchers were actually conducting a clinical experiment to see what happened when syphilis was left untreated over time. Even after penicillin was discovered, researchers failed to offer it to the men.
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1950

Henrietta Lacks’ Immortal HeLa Cells

After being diagnosed with cervical cancer, Henrietta Lacks, a mother of five, went to Johns Hopkins Hospital for treatment. A sample of Henrietta’s cancerous tissue was given to Dr. George Gey, head of tissue research — without Henrietta consenting to this. In fact, no one even told her they’d taken a tissue sample. Using Henrietta’s cells, Dr. Gey created the first line of immortal human cells, called HeLa, which were used in research to discover many scientific and medical breakthroughs. Henrietta died at age 31, just months after she was diagnosed.
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1972

Tuskegee Study Secret Revealed

Forty years after the Tuskegee Study began, Associated Press reporter Jean Heller published an article revealing the truth about the experiment. By that time, 128 men had died of syphilis or related complications, at least 40 of the men’s wives had been infected with the disease, and 19 children had been infected at birth.
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1974

National Research Act

Two years after the Tuskegee Study ended, Congress passed the National Research Act to prevent researchers from exploiting human subjects. To monitor clinical trials and protect patient’s rights, they also created the Office for Human Research Protections within the US Department of Health and Human Services. This also led to more regulation of clinical trials, including the requirement that all participants are provided with informed consent. This means that patients must be told exactly what will be done to them and agree to participating before they join a trial.
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1997

Presidential Apology for Tuskegee Trial

On behalf of the United States, President Bill Clinton issued a formal apology to the survivors of the Tuskegee study: Herman Shaw, Carter Howard, Charlie Pollard, and Fred Simmons. He said, "What was done cannot be undone, but we can end the silence. We can stop turning our heads away. We can look at you in the eye, and finally say, on behalf of the American people, what the United States government did was shameful and I am sorry." President Clinton also acknowledged that the experiment created mistrust and decreased African Americans’ participation in clinical trials.
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2010

The Immortal Life of Henrietta Lacks

After 10 years of research, Rebecca Skloot published, a best-selling book that explores Henrietta’s life, how HeLa built a multi-million dollar industry, and how her family has dealt with the discovery that Henrietta’s cells have been used in medical research all over the world.
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2017

Study to Understand African Americans’ Attitudes about Clinical Trials

To learn more about how underrepresented populations feel about clinical trials, pharmaceutical company AstraZeneca asked researchers at Deloitte to conduct a mock clinical trial around the treatment of SLE and lupus nephritis. African American patients at an Atlanta hospital participated, along with low- to middle-class white patients at an Altoona, Pennsylvania, facility. The study, Simulating Clinical Trial Visits Yields Patient Insights into Study Design and Recruitment, found that African American participants wanted to be able to find information on the Internet, and to get help with transportation and child care during their visits. They were concerned about the time commitment involved, they wanted to understand the personal benefits that might come, and they valued confidentiality and trust. The authors of the study said that these insights could be used to improve future clinical trials, so that they attract and retain greater numbers of participants — and ultimately, find treatments and cures.

The Future

Despite the troubling history, today’s clinical studies are safer than ever before. Institutional review boards that include both scientists and lay people oversee most studies to help keep participants safe. Informed consent laws require clinical researchers to provide participants with complete information about the study, including benefits and risks. Better – and more – treatments, and even a universal cure, for sickle cell may be near if patients continue to participate in clinical studies.

Talk to your doctor.
It's easy!

Take our “Ask Your Doctor” sheet to your physician to start a conversation about clinical studies. There are 5 questions that will help you learn more about studies in your area.

Want more information about clinical studies?

ClinicalTrials.gov is a database of privately and publicly funded clinical studies conducted around the world. Explore 259,383 research studies in all 50 states and in 201 countries.

ClinicalTrials.gov is a resource provided by the U.S. National Library of Medicine.

The National Institutes of Health (NIH), a part of the U.S. Department of Health and Human Services, is the nation’s medical research agency — making important discoveries that improve health and save lives.

FDA is an agency within the Department of Health and Human Services.

The FDA's organization consists of the Office of the Commissioner and four directorates overseeing the core functions of the agency: Medical Products and Tobacco, Foods, Global Regulatory Operations and Policy, and Operations.

CDC laboratories routinely work with some of the most deadly germs in the world – identifying health threats and conducting vital public health research. CDC constantly develops and reviews extensive laboratory guidelines and procedures to protect both the public and laboratory workers.

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Our vision is a world without sickle cell disease

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