Tuskegee and the safeguards that exist now
The honest history of the Tuskegee syphilis study, and the protections it led to: ethics review, informed consent and your right to leave.
7 min read · Informational only, not medical advice.
What happened
From 1932 to 1972, the US Public Health Service ran a study in Macon County, Alabama, that followed about 600 Black men, roughly two-thirds of whom had syphilis.
The men were told they were being treated for "bad blood." They were never told they had syphilis, and they did not give informed consent. Even after penicillin became the standard cure in the 1940s, the men were not offered it. Many died, wives were infected, and children were born with the disease.
How it ended
The study ended in 1972 after a news report brought it to public attention.
A federal panel found the study ethically unjustified. In 1997 the President formally apologized on behalf of the United States to the survivors and their families.
Why the mistrust is understandable
Tuskegee was not the only abuse in medical research, and it is reasonable that its history still affects how people feel about trials.
Trust has to be earned through honest information and real protections. The rest of this guide explains the protections that now exist, and how you can check them for any study you consider.
Ethics review before a study starts
In response to Tuskegee, Congress passed the National Research Act in 1974, and US rules now require an independent ethics board, called an Institutional Review Board or IRB, to review most research with people before it begins.
The IRB checks that risks are reasonable, that people are chosen fairly, and that the consent process is honest. It keeps reviewing the study while it runs and can stop it.
Informed consent
Before you join, the study team must explain in plain language what the study involves, its possible risks and benefits, and your other options.
You receive a written consent form, you can take time to decide, and you can ask questions at any point. Nobody is allowed to enroll you in a study without telling you that it is research.
Your right to leave
You can leave a clinical trial at any time, for any reason, without losing the medical care you would otherwise receive.
You don't have to explain why. The study team may ask to do a final safety check, but agreeing to it is your choice.
How to check a study yourself
Ask the study team which IRB approved the study and how to contact it. Every study on RightFit links to its public record on ClinicalTrials.gov.
You can also ask a trusted doctor, nurse or community health worker to look at the study with you before you decide.
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Quick answers
- What was the Tuskegee study?
- From 1932 to 1972, the US Public Health Service ran a study in Macon County, Alabama, that followed about 600 Black men, roughly two-thirds of whom had syphilis.
- How did the Tuskegee study end?
- The study ended in 1972 after a news report brought it to public attention.
- What protections exist in clinical trials today?
- In response to Tuskegee, Congress passed the National Research Act in 1974, and US rules now require an independent ethics board, called an Institutional Review Board or IRB, to review most research with people before it begins.
- Can I leave a trial if I change my mind?
- You can leave a clinical trial at any time, for any reason, without losing the medical care you would otherwise receive.
- How can I check that a study is properly overseen?
- Ask the study team which IRB approved the study and how to contact it.
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