The Tuskegee study: Abandonment of ethics
New center to offer degrees, research opportunities
Historians and researchers at Tuskegee (AL) University would like the legacy of the syphilis experiments begun in the 1930s to serve not only as a reminder of what can happen when bioethics principles are forsaken, but also as an impetus for people of all races to work together in research and health care. For this reason, they have developed a proposal to establish a center for bioethics in research and health care.
In making a formal apology to the survivors of the Tuskegee study, President Clinton announced a $200,000 funding grant to establish the center.
"It is apparent that we need to move beyond the study and transform its legacy into renewed efforts to bridge the chasm between the health conditions of black and white Americans," says Frank J. Toland, professor of history at Tuskegee. Among other goals, the center hopes to:
• create and maintain a museum documenting the study, including endangered records and documents;
• conduct national education efforts, including professional conferences, aimed at helping bioethics professionals and clinical researchers develop ethically responsible research and health care among diverse populations;
• conduct public education in schools, in community organizations, and among health care professionals on the ramifications of the study.
"There are significant challenges facing the field of bioethics, largely in the areas of genetics and research, and if we are not careful we could easily go morally astray again," says Benjamin F. Payton, PhD, president of Tuskegee University and a doctor of ethics.
Efforts to include minority fellowships
In addition to funding the new center, the Clinton administration announced the following three initiatives:
1. The Department of Health and Human Services will develop strategies to involve communities, especially minority communities, in research and health care and issue a report of these strategies to the President by the end of November 1997.
2. By May 1998, the federal government will complete and disseminate bioethics training materials for all researchers.
3. By September 1998, post-graduate fellowships in bioethics will be available to minorities who will be recruited to enroll in bioethics graduate programs.
A desire to discover a Negro disease’
"What many people do not understand is that the Tuskegee syphilis experiments came about because the researchers believed they would actually prove that there was a racial hierarchy," Payton tells Medical Ethics Advisor.
"The scientists involved in the research wrote the protocols revealing great excitement. They believed they were on the verge of discovering A Negro Disease,’" he says.
The Tuskegee Study of Untreated Syphilis in the Negro Male, as it was officially named, was undertaken by the U.S. Public Health Service in 1932. Originally, the study was a syphilis control demonstration project that was scheduled to last six to eight months. In all, the study ran for 40 years.
Macon County, AL, was chosen for the study because of its high prevalence of syphilis (35%), much of it untreated. It was rural and had a high incidence of poverty and an 84% black population. All 600 study subjects were African American. Except for one nurse, all medical professionals were white.
Patients were recruited into the study with the promise of treatment, yet they received none, despite the advent of penicillin use just eight years after it was discovered. The purpose of the study became merely data collection on untreated syphilis, Payton says.
Subjects joined the study through churches, schools, and community gatherings, and their blood tests often were done at makeshift tables set up under trees. The local Red Cross House required recipients of its services to submit to blood tests, as did the Reconstruction Finance Corporation, an agency that provided public jobs to the unemployed.
Ethical breaches led to reforms
Payton says that the ethical breaches of conduct in the Tuskegee study have fostered distrust among blacks but also have led to policies about informed consent and research conduct. Now, he says, the study’s legacy must lead ethicists to examine the disparity in health morbidity and mortality in African American populations.
The Tuskegee bioethics center is expected to offer both undergraduate and graduate programs in bioethics. The center will partner with other research universities to develop a broad range of research and education on all aspects of bioethics, Payton says.
The first national African American center for bioethics is being established at Tuskegee University, says its president, because the initial changes must come from within black institutions of higher learning. In the final analysis of the plan, however, they must reach across a total spectrum.
(Editor’s note: The information about the Tuskegee syphilis experiments presented in this article was taken from a history developed by Tuskegee University.)
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