Increase / Dr. Walter Edmondson of PHS took a blood sample from a 1953 Taskigi study participant in Milstead, Macon County, Georgia.

National Archives / Public Heritage

This year marks 50 years since The New York Times unveiled the infamous A study of Taskiga’s syphilis, thanks to a frustrated social worker who told the press. By the time it broke down in 1972, experiments had been conducted on unsuspecting black men in the Taskigi area of ​​Alabama for 40 years. All 400 or so men have contracted syphilis, and all have been told they are being treated for the disease, except that they are not.

The researchers in charge of the study instead deliberately discontinued treatment to monitor disease progression if it progressed uncontrollably. Speech in the study led to public outcry and a heated debate over informed consent, which ultimately led to a number of rules to prevent such ethical errors in the future. The study of Taskiga’s syphilis has since become an important case study in bioethics, but public awareness of its existence is of poor quality at best. A new paper published in the American Journal of Respiratory and Critical Care Medicine, attempts to correct this, and he argues that federal regulation is not enough to prevent such unethical research.

“Citizens are obliged to remember the victims of any major disaster, as people have been doing since September 11,” newspaper author Martin Tobin told Ars. “The men in Taskiga received serious injuries, including death, at the hands of the U.S. government’s prime minister of health. Refusing to remember what happened to these people is to add another layer of trauma to what they have already experienced. “

Tobin, a professor of medicine at Hays Veterans Hospital and Loyola University School of Medicine in Chicago’s Strich, wanted to make sure memories are not ignored in favor of another 50th anniversary this year. Watergate scandal, which dominated national headlines in 1972 and eventually led to the resignation of President Richard Nixon two years later. There have been a number of previous scholarly articles on the study of Taskiga written by historians or ethicists. But over 45 years of practice, Tobin conducted his share of research on patients, and he felt that the experience gave him a unique perspective.

An unidentified participant in a study in a cotton field.
Increase / An unidentified participant in a study in a cotton field.

CDC / National Archives / Public Heritage

Tobin is also a teacher who understands the power of good history to impart fundamental principles. “As paradoxical as it may seem, scandals provide strong guidance on research ethics because scandals give the human face abstract principles that are violated,” Tobin said. “Everything a researcher needs to know about research ethics is contained in Taskiga’s history, and it’s more instructive than getting handouts about informed consent and abstract concepts.”

The scourge of syphilis

Unlike many research projects that question ethics, Taskiga’s research was notable because it was not done in secret. She had the full support of many prominent leaders of the medical profession. The idea originated in 1932 from Taliafer Clark, then director of the Public Health Service (PHS), a forerunner of today’s Centers for Disease Control and Prevention (CDC). Clark read about a 1928 study with white people conducted in Oslo, Norway. He thought it would be a great idea to conduct a similar study using poor black lobsters in Macon County, Alabama, many of whom have contracted the disease. At the time, syphilis was a serious health problem, and it was believed that the effects of the disease depended on the patient’s race.

Subjects were recruited with the help of a black nurse named Eunice Rivers; her participation was key to gaining the trust of shareholders. In exchange for participation, the subjects were promised a free examination, free transport to the clinic and back, hot meals these days and free treatment for any minor ailments. Rivers was also able to persuade many families to agree to expose the corpse in exchange for funeral assistance, which is of great concern to project managers. “When the colored population learns that accepting free hospital care means posthumous, every dark-skinned person will leave Macon County,” wrote a colleague of one of the doctors on the project.

However, researchers lied to men about their condition; they told them they were being treated for “bad blood” and not for syphilis. They also lied about “treatments”; men were given dummy pills, even after penicillin was found to be effective against syphilis and became widely available. And they lied about the need for painful lumbar punctures to test for neurosyphilis, telling subjects that they were therapeutic rather than purely diagnostic.

Several physicians expressed concerns about the ethics of the study in 1955 and 1965, but their warnings were ignored. In December 1965, a social worker of Czech descent named Peter Buxton joined the CDC by then to interview patients with sexually transmitted diseases. He soon wrote to the CDC expressing “serious moral concerns” about Taskiga’s research. When the CDC invited him to a meeting in Atlanta to discuss the issue, Buxton was outraged by CDC doctor John Charles Cutler, who clearly “thought I was crazy”. Undaunted, Buxton rewrote the CDC in November 1968, and this time director David Senser founded the Blue Ribbon Panel group in February of the following year to discuss ethical issues.

When the board decided that men should not be treated – they found the study too important for science – Buxton contacted the press. The Washington Star published this story on July 25, 1972, and the next day it appeared on the front page of The New York Times. Public outcry forced a special advisory group to conduct a further investigation, and the study was finally stopped in October 1972. By then, 28 subjects had died of syphilis, 100 had died of concomitant complications, 40 of the subject’s wives had been infected, and 19 children were born with congenital infants.

https://arstechnica.com/?p=1851436

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