NLM’s Collection on the US Public Health Service Syphilis Study at Tuskegee

Summary

In 1932, the U.S. Public Health Service initiated the unethical Tuskegee Syphilis Study on 600 black men in Alabama, without informed consent, under the guise of treating 'bad blood.' The study's exposure in 1972 led to its termination and the establishment of ethical research protocols, including voluntary informed consent. The victims received compensation, and in 1997, President Clinton apologized for the study. The National Library of Medicine preserves documents from this period to promote transparency and ensure past lessons inform future research.

Takeaways

• 📅 In 1932, the U.S. Public Health Service initiated the unethical Tuskegee Syphilis Study without informed consent from participants.
• 🧑‍⚕️ The study involved 600 black men, 399 of whom had syphilis, under the guise of treating 'bad blood'.
• 🏥 Participants were misled; they were told they were receiving treatment for various ailments, not just syphilis.
• 🍽️ In exchange for participation, the men were offered free medical exams, meals, and burial insurance.
• 📰 The study was exposed in 1972 by Associated Press reporter Jean Heller, leading to an investigation.
• 🏛️ The ad hoc panel appointed to investigate concluded that the study was 'ethically unjustified' and recommended its termination.
• 🔚 At the study's end, only 74 of the original 600 participants were alive; many had suffered severe consequences.
• 🏥 The study led to the infection of 40 wives and 19 children born with congenital syphilis.
• 🛡️ The investigation prompted the establishment of new ethical protocols for human subject research, including informed consent.
• 🌟 President Clinton issued a formal apology for the Tuskegee Syphilis Study in 1997, acknowledging the injustices.
• 📚 The National Library of Medicine preserves documents from the study to improve research transparency and prevent future ethical breaches.

Q & A

When did the United States Public Health Service initiate the study on the effects of untreated syphilis?

The study was initiated in 1932.

In which county and state was the study conducted?

The study was conducted in Macon County, Alabama.

How many participants were initially involved in the study, and how were they divided in terms of health condition?

The study initially involved 600 black men, of which 399 had syphilis and 201 did not have the disease.

What was the local term used by researchers to describe the condition being studied?

Researchers told the men they were being treated for 'bad blood,' a local term used to describe several ailments, including syphilis, anemia, and fatigue.

What incentives were provided to the participants for their involvement in the study?

In exchange for their participation, the men received free medical exams, free meals, and burial insurance.

When was the news about the study first reported to the public, and by whom?

The news about the study was first reported on July 25, 1972, by Associated Press reporter Jean Heller.

What action was taken by the U.S. Department of Health, Education, and Welfare following the news report?

Following the news report, the U.S. Department of Health, Education, and Welfare appointed an ad hoc panel to investigate the study.

What was the panel's recommendation regarding the continuation of the study?

In October 1972, the panel advised stopping the study, and it was ended a month later.

What was the conclusion of the panel's final report regarding previous research on African Americans with syphilis?

The panel concluded that the previous research on African Americans with syphilis was 'ethically unjustified.'

What were the health impacts on the participants' families as a result of the study?

Forty of the participants' wives were infected, and 19 of their children were born with congenital syphilis.

What changes in research protocols were implemented as a result of the study's investigation?

Voluntary informed consent for research subjects became the new standard, and an explicit requirement for government-funded research.

When did President Clinton issue a formal apology for the Tuskegee Syphilis Study?

President Clinton issued a formal Presidential apology for the Tuskegee Syphilis Study in 1997.

Where were the panel's working papers deposited for public access?

A copy of the panel's working papers was deposited in the National Library of Medicine, NLM, located on the campus of the National Institutes of Health in Bethesda, Maryland.

What is the purpose of the National Library of Medicine collecting and preserving collections like the Tuskegee Study Ad Hoc Advisory Panel's?

The purpose is to improve transparency in research and to ensure that lessons of the past inform the present and future of biomedical research, healthcare, public health, and healthy behavior.