History of race and medical mistrust

It’s understandable that some are wary of clinical trials. There is a long and justified history of medical mistrust among people of color in the United States. This mistrust stems from historical injustices that have led individuals and communities to question the intentions of medical research.

A timeline of race and clinical trials

Enslaved people were denied proper healthcare. Some were sold for experiments if they were too old or sick to work. They were used in medical education, experiments, and surgical practices. Dr. James Sims was known for doing cruel, painful experiments on enslaved women without using pain drugs.

1776

The institution of slavery

Black people did not receive proper healthcare at hospitals, and were denied care at many hospitals. Instead, Black people were placed in “charity wards.” In exchange for care in these wards, they agreed to take part in experiments. But most patients were not told that their health and their lives could be at risk.

1865

Reconstruction era

Medical mistrust is further fueled by years of forced procedures and experiments. This included the sterilization of low-income and disabled Native American, African American, and Puerto Rican women. This unethical practice went on for more than 50 years.

1907

Early 20th century

For 40 years, the U.S. Public Health Service convinced 600 poor Black men in Tuskegee, Alabama, to be in a medical study. They recruited men who had syphilis but did not inform them they were sick, or that the study was about untreated syphilis. At least half received no treatment for syphilis and were barred from proper medical care for the disease, even after penicillin was discovered to be a cure in the 1940s.

These men were victims. They suffered unnecessary harm, as did their families, and many died. This was unethical and immoral and has led to mistrust that lasts to this day. With good reason.

1932 – 1972

Tuskegee study

Six Black men walking on road
Henrietta Lacks went to Johns Hopkins Hospital with cervical pain. After a biopsy, she was diagnosed with cervical cancer. Tumor cells from her biopsy were taken and used for research. But she was not told this would be done. Her family did not know. Researchers violated her rights as a patient and as a person. Taking her cells in this way went against modern principles of research. It was unethical. Researchers continue to use her cells to this day.

1951

Henrietta Lacks

black and white photo of Henrietta Lacks
In 1990, the New York State Psychiatric Institute (NYSPI) and Columbia University conducted an unethical clinical trial. Researchers aiming to link genetics and violence studied 126 Black boys. Most of the boys were taking asthma medication before joining the trial. Researchers convinced parents to stop all asthma medications for the boys, change their diet, approve non-parental overnight stays, withhold water, and give them fenfluramine (a drug linked to violent behavior). Researchers designed the study around their own biased assumptions about race and violence. They treated the boys inhumanely. And unethically recruited only Black boys. They wanted the results to match their pre-assumptions about these boys.

1990

Late 20th century

President Barack Obama was instrumental in launching the Precision Medicine Initiative. This allowed the National Institutes of Health (NIH) to build a diverse health database that can change the future of healthcare. The information collected will help researchers learn more about the effects biology, lifestyle, and environment have on our health. And this may lead to new and better ways to treat and prevent diseases and health conditions for all of us.

2015

Precision Medicine Initiative

Clinical trials played a key role in creating the vaccine for COVID-19. There was a need to ensure racial and ethnic diversity in the development of the vaccine because of the number of cases and deaths from COVID-19 in Black adults. Despite a history of medical mistrust, people of color joined the vaccine trials. They were instrumental in the rapid development of this vaccine. Because of these trials, people of color are starting to learn why they matter in clinical trials.

2020

COVID-19 clinical trials

The family of Henrietta Lacks was traumatized by the unethical removal and continued use of her tumor cells. In 2023, over 70 years after Lacks’ passing, her family won a settlement from the company that has profited off the cells taken without her consent decades earlier. This settlement is one step in the right direction. We must learn from past mistakes as we work to address medical racism in the United States.

2023

Henrietta Lacks settlement

How past injustices impact today

Today, the effects of this history are still felt. Medical racism, whether it’s obvious or hidden, keeps unfair biases going in the healthcare system. People of color experience inequality in:

  • Access to healthcare
  • Feeling heard, respected, and taken seriously by healthcare providers
  • Quality of healthcare
  • Inclusion in clinical trials
  • Health outcomes

The legacy of medical racism can be seen today. Bias leads to unequal treatment based on race. Health and disease disparities, gaps in representation in clinical trials, and differences in health outcomes show the widespread impact of medical racism.

Building trust in clinical trials

To build trust, trial sponsors and teams can engage with a wide variety of communities and understand their concerns. They can address social health factors and offer educational resources that help all of us understand trials. We’re headed in the right direction, but there’s a long way to go.

patient hugging their doctor

Facts and fiction: a look at misconceptions

When it comes to clinical trials, it’s important to separate fact from fiction. This can help you make a more informed choice about participating. Let’s start by clearing up two misconceptions about clinical trials today. 

Placebo

FICTION: People of color are more likely to get a placebo in a clinical trial. 

FACT: If you join a trial that has a placebo, you will have the same chance to get the placebo as everyone else in the trial. And you will have the same chance as all others to get a potential treatment. Which of these you get will be assigned at random (by chance). 

The first time a potential treatment or prevention option is tested in people is in a phase 1 trial. This phase may include small groups of people. And the clinical trials in phase 1 often look to enroll healthy people. Before researchers conduct tests in large groups of people with a specific disease or health condition, they want to learn more about:

  • Safety of the potential treatment or prevention
  • Potential side effects in people
  • Different doses that may be given to people (if applicable)

Trial Teams

FICTION: Only white healthcare providers work on clinical trials.  

FACT: FDA guidance from 2020 specifically recommends that clinical trial sponsors “consider diversity when selecting healthcare providers and study coordinators to assist with clinical trial recruitment.” In accordance with this federal guidance, clinical trial sponsors strive to recruit diverse teams of healthcare providers to work on their trials. These teams should reflect the communities they serve because “participants may prefer a healthcare provider of their same cultural background.” This can help trial teams relate to the needs and concerns of all persons in the trial. 

Phase 3 clinical trials are a lot like phase 2 clinical trials. Safety tests continue. Side effects are tracked closely. And researchers learn more about how effective a potential treatment or prevention may be. But this phase might enroll an even larger group of people. It may also help researchers compare options. In other words, researchers can find out if a potential treatment or prevention:

  • Is more effective than current options
  • Has fewer or less severe side effects
  • Can be administered less frequently or in a different way

After phase 3, the FDA reviews all results. They decide if the potential treatment or prevention should be approved. This is based on how safe and effective it is when given to people. But the research doesn’t necessarily end there. Phase 4 clinical trials collect more data after approval. This phase typically includes:

  • Assessment of long-term safety and effectiveness
  • Information collected when the approved treatment or prevention is given to patients under the care of their healthcare providers (rather than the trial medical team)

What else do I need to know?

Clinical trials, sex, and gender

Understand some of the history of clinical trials related to gender and biological sex, and why representation is key.

Learn more

Your clinical trial experience

If you’re thinking about joining a clinical trial, learn about the typical clinical trial journey for patients.

Explore the patient journey

Find a clinical trial

PAN’s TrialFinder site makes it easy to search for clinical trials based on your condition and location.

Search trials

Call us for help

Our ComPANion Access Navigators can answer your questions and help you use our trial finder.
1-855-329-5969

Learn more

Stay connected

We do more than just clinical trial education. Sign up to receive news and updates from the PAN Foundation.

Sign up