Health Disparities
Learning From the Past. The Tuskegee Trials
The Tuskegee Syphilis Experiment was one of the worst examples of how NOT to conduct medical research. Thankfully, research ethics and the ways in which studies are controlled have come a long way since then. So, what have we learned from Tuskegee?
Background
In Macon County, Alabama, in 1932 the U.S. Department of Public Health Services (DPHS) recruited 399 African American men with syphilis into a research study. The treatment for syphilis at that time, mercury and bismuth, had a cure rate of less than 30%, had severe side effects and was often fatal. During the economic depression following the Wall Street crash, it was decided not to treat African Americans with syphilis at all. The purpose of the study was to observe the natural course of syphilis - to learn more about the disease and to justify treatment programs for blacks.
Informed Consent
Although the men had agreed to be examined and treated, they did not know what the real purpose of the study was.
They also did not know that they would not receive any treatment, or that they could withdraw from the study at any time.
This means that they did not give informed consent
Federal law now requires that all research participants are protected. Part of this protection requires that all
participants sign an informed consent document. U-M has a regulatory body - the
Institutional Review Board (IRB) – that oversees ALL U-M
research and ensures that this happens.
Data Monitoring Committees
In 1945 penicillin was recognized as being an effective treatment for syphilis. However, it was decided that the
399 men in the Tuskegee study would not receive treatment.
There are now data monitoring committees composed of experts whose job it is to ensure the safety of the participant.
These committees are most important when treatments are being compared. During a study, if the committee finds that
the treatment is harmful or of no benefit, it will stop the study. If a study shows that one treatment works better
than another, the committee stops the study and all volunteers are offered the better treatment.
Right to withdraw
It is also very important to know that you can decide to stop participating in a trial AT ANY TIME. Just because you agreed to take part does not mean you have to continue with the study. If at any time you change your mind, it is your right to stop participating.
Community-based research
UMHS is committed to conducting culturally aware research. One of the problems we have identified is that communities of color may experience so called “helicopter research,” in which an investigator enters the community, provides resources and then leaves -- taking the resources with them when the research is completed. We are committed to finding ways to enhance the community, not only while we are conducting community research but permanently. Our aim is to leave a community better off after participating in research by providing long-term resources. One such program is led by the Comprehensive Cancer Center - “Body and Soul.”
Why should I participate?
By participating, you are helping to expand medical knowledge and ensure better healthcare for future generations. You may also get access to new treatments before they are available, have contact with medical specialists and may receive some small compensation for participating.
