the story
the study begins
Voices For Our Fathers Legacy Foundation is dedicated to preserving history and the legacies of the 625 African American men victimized and unethically treated in the United States Public Health Service (USPHS) Study of Untreated Syphilis in the Negro Male at Tuskegee and Macon County, Alabama, from 1932 - 1972. In the annals of United States (U.S.) medical history, this study stands out as the most notorious medical research scandal for its profound impact on the ethics of medical research. It is the longest lasting non-therapeutic study in U.S. medical history.
Originally known as the “Tuskegee Study of Untreated Syphilis in the Negro Male” the USPHS study, working with the Tuskegee Institute, began in 1932 in Tuskegee, Alabama, which then had the highest syphilis rate in the nation, according to some reports at the time. The study was designed to chart the natural progression of untreated syphilis and determine through autopsies what specific damage untreated syphilis does to the human body in the African American male. The USPHS study, conducted without the patients’ informed consent, initially enlisted 600 African American men -- 399 with syphilis and 201 who did not have the disease. Researchers told the men they were being treated for “bad blood” -- a local term used to describe several ailments including syphilis, anemia and fatigue. Each man was promised free medical exams, free meals and burial insurance in exchange for their participation in the study. Though approximately two-thirds of the men tested positive for syphilis, they were never informed of their status or told the true purpose of the study. Although originally projected to last 6 months, the study went on for 40 years.
what went wrong
During the 1930s, treatment for syphilis consisted of doses of arsenic and mercury. However, in 1947 penicillin became the standard syphilis treatment, leading to the USPHS opening Rapid Treatment Centers around the country. Yet, despite these medical advances, federal health officials ordered the drugs be withheld from these study participants. This study became an observation of how the disease ravaged the body as these men who were never treated experienced blindness or cognitive decline or other severe complications.
In 1972, Peter Buxtun, a former USPHS employee and ultimate whistleblower, leaked information of this unethical study to The Associated Press, sparking a public outcry that led to the Assistant Secretary for Health and Scientific Affairs to appoint an Ad Hoc Advisory Panel to review the study. The panel had nine members from the fields of medicine, law, religion, labor, education, health administration, and public affairs. The panel found that the men had agreed freely to be examined and treated; however, there was no evidence of researchers informing them of the true purpose of the study. In fact, the men had been misled and not given all the facts required to provide informed consent. The men were never given adequate treatment for their disease although penicillin became the drug of choice for syphilis in 1947. The advisory panel found nothing to show that subjects were ever given the choice of quitting the study, even when the new highly-effective treatment of penicillin became widely used throughout the United States.
the study ends AND reparation begins
The advisory panel concluded that the USPHS Study of Untreated Syphilis in the Negro Male at Tuskegee and Macon County, Alabama, from 1932 - 1972 was “ethically unjustified” – the knowledge gained was sparse when compared to the risks the study posed for its subjects. In October 1972, the panel advised immediately terminating the study. One month later, the Assistant Secretary for Health and Scientific Affairs announced the end of the USPHS Study.
In the summer of 1973, a class-action lawsuit was filed on behalf of the study participants and their families. In 1974, a $10 million out-of-court settlement was reached and, as part of the settlement, the U.S. government promised to give lifetime medical benefits and burial services to all living participants. The Tuskegee Health Benefit Program (THBP) was established to provide these services. In 1975, wives, widows and children were added to the program. In 1995, the program was expanded to include health as well as medical benefits. The Centers for Disease Control and Prevention (CDC) was given responsibility for the program, where it remains to this day in the National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention.
The last study participant died in January 2004. The last widow receiving THBP benefits died in January 2009. There are currently 12 children receiving medical and health benefits.
LASTING EFFECTS
The USPHS Study of Untreated Syphilis in the Negro Male at Tuskegee and Macon County has had a lasting impact on the field of medical research, leading to significant changes in U.S. law and ethical standards for human subject research. The National Research Act, which was passed in 1974, included the creation of federal rules to protect human participants in research. It also led to the establishment of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research to identify standards to guide human research. The Institutional Review Boards that now review and approve research involving human subjects were also established. It led to the Blemont Report and strengthened informed consent. As a result, informed consent became a fundamental requirement in all research studies.
Despite these changes, the legacy of the study continues to reverberate in many communities, fostering an ongoing distrust of the medical establishment and serving as a powerful reminder of the vital importance of maintaining the highest ethical standards to protect human subjects.
CDC AND PREVENTION study timeline
1895
Booker T. Washington at the Atlanta Cotton Exposition, outlines his dream for black economic development and gains support of northern philanthropists, including Julius Rosenwald (President of Sears, Roebuck and Company).
1900
Tuskegee educational experiment gains widespread support. Rosenwald Fund provides monies to develop schools, factories, businesses, and agriculture.
1915
Booker T. Washington dies;
Robert Moton continues work.
1926
Health is seen as inhibiting development and major health initiative is started. Syphilis is seen as major health problem. Prevalence of 35 percent observed in reproductive age population.
1929
Aggressive treatment approach initiated with mercury and bismuth. Cure rate is less than 30 percent; treatment requires months and side effects are toxic, sometimes fatal.
“Wall Street Crash”
economic depression begins.
1931
Rosenwald Fund cuts support to development projects. Clark and Vondelehr decide to follow men left untreated due to lack of funds in order to show need for treatment program.
1932
Follow-up effort organized into study of 399 men with syphilis and 201 without. The men would be given periodic physical assessments and told they were being treated. Moton agrees to support study if “Tuskegee Institute gets its full share of the credit” and black professionals are involved (Dr. Dibble and Nurse Rivers are assigned to study).
1934
First papers suggest health effects of untreated syphilis.
1936
Major paper published. Study criticized because it is not known if men are being treated. Local physicians asked to assist with study and not to treat men. Decision was made to follow the men until death.
1940
Efforts made to hinder men from getting treatment ordered under the military
draft effort.
1945
Penicillin accepted as treatment of choice for syphilis.
1947
USPHS establishes “Rapid Treatment Centers” to treat syphilis; men in study are not treated, but syphilis declines.
1962
Beginning in 1947, 127 black medical students are rotated through unit doing the study.
1968
Concern raised about ethics of study by Peter Buxtun and others.
1969
CDC reaffirms need for study and gains local medical societies’ support (AMA and NMA chapters officially support continuation of study).
1972
First news articles condemn studies.
Study ends.
1973
Congress holds hearings and a class-action lawsuit is filed on behalf of the
study participants.
1974
A $10 million out-of-court settlement is reached. The U.S. government also promised to give lifetime medical benefits and burial services to all living participants; the Tuskegee Health Benefit Program (THBP) was established to provide
these services.
1975
Wives, widows and children were added to the program.
1995
The program was expanded to include health as well as medical benefits.
1997
On May 16th President Clinton apologizes on behalf of the Nation.
1999
Tuskegee University National Center for Bioethics in Research and Health Care hosts 1st Annual Commemoration of the Presidential Apology.
2001
President’s Council on Bioethics was established.
2004
CDC funds 10 million dollar cooperative agreement to continue work at Tuskegee University National Center for Bioethics in Research and Health Care.
2004
The last United States Public Health Service Study of Untreated Syphilis in the Negro Male at Tuskegee and Macon County, Alabama 1932 - 1972 participant passes away on January 16.
2006
Tuskegee University holds formal opening of Bioethics Center.
2007
CDC hosts Commemorating and Transforming the Legacy of the United States Public Health Service (USPHS) Syphilis Study at Tuskegee.
2009
The last widow receiving THBP benefits passes away on January 27.
2010
The children and their descendants unite to form The Voices for Our Fathers
Legacy Foundation.