TuskegeeStudyCDC.pdf

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The Tuskegee Study http://www.cdc.gov/tuskegee/timeline.htm

The Study Begins

In 1932, the 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 "Tuskegee Study of Untreated Syphilis in the Negro Male."

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.

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What Went Wrong?

In July 1972, an Associated Press story about the Tuskegee Study 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 and Reparation Begins

The advisory panel concluded that the Tuskegee Study 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 Tuskegee 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. 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 offspring 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 15 offspring currently receiving medical and health benefits.

The Tuskegee Timeline

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.

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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.

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. Motin 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

United States Public Health Service (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.

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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 and 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.

1975

Wives, widows and offspring 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 U.S. Public Health Service Syphilis Study at Tuskegee participant dies 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 dies on January 27.

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