.02

the whole story

 

the study begins

 

In 1932, the United States Public Health Service, working with the Tuskegee Institute, began a study to record the natural history of syphilis in hopes of justifying treatment programs for blacks. It was called the “United States Public Health Service Study of Untreated Syphilis in the Negro Male at Tuskegee and Macon County, Alabama 1932 - 1972.” The study initially involved 600 black men – 399 with syphilis, 201 who did not have the disease. The study was conducted without the benefit of patients’ informed consent. Researchers told the men they were being treated for “bad blood,” a local term used to describe several ailments, including syphilis, anemia, and fatigue. In truth, they did not receive the proper treatment needed to cure their illness. In exchange for taking part in the study, the men received free medical exams, free meals, and burial insurance. Although originally projected to last 6 months, the study actually went on for 40 years.


what went wrong

 

In July 1972, an Associated Press story about the United States Public Health Service Study of Untreated Syphilis in the Negro Male at Tuskegee and Macon County, Alabama 1932 - 1972 caused a public outcry that led 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 that researchers had informed them of the study or its real purpose. In fact, the men had been misled and had not been given all the facts required to provide informed consent. The men were never given adequate treatment for their disease. Even when penicillin became the drug of choice for syphilis in 1947, researchers did not offer it to the subjects. The advisory panel found nothing to show that subjects were ever given the choice of quitting the study, even when this new, highly effective treatment became widely used.

 

the study ends & reparation begins

 

The advisory panel concluded that the United States Public Health Service Study of Untreated Syphilis in the Negro Male at Tuskegee and Macon County, Alabama 1932 - 1972 was “ethically unjustified”–the knowledge gained was sparse when compared with the risks the study posed for its subjects. In October 1972, the panel advised stopping the study at once. A month later, the Assistant Secretary for Health and Scientific Affairs announced the end of the United States Public Health Service Study of Untreated Syphilis in the Negro Male at Tuskegee and Macon County, Alabama 1932 - 1972. 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. 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 was given responsibility for the program, where it remains today 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 12 children currently receiving medical and health benefits.

 

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.