Experimentations on humans have always been met with some degree of suspicion in America. Yet, history recalls several incidents which implicated well –established agencies that have been involved. One such embarrassing incident took place at Tuskegee. This is the story of “Miss Evers Boys. ” It has come to symbolize racism in medicine, ethical misconduct in human research, paternalism by physicians and government abuse of vulnerable people. The South did not fare well during the depression of the 1930s. In fact, it resembled an underdeveloped nation.
The people, both black and white, were extremely poor, less educated than most Americans and they remained mostly rural in nature. It was apparent that money was hard to “come by. ” As a group, African-Americans were among the poorest of all groups. They were virtually paupers. They suffered from chronic unemployment, poor sanitation, inadequate diets and some even went without the benefit or rudiments of adequate hygiene. They suffered from a host of diseases including tuberculosis, syphilis, hookworms, pellagra, rickets, rotten teeth, and lower life spans than whites.
Few blacks received medical attention—although some needed it desperately. Many lived outside the world of modern medicine, going from the cradle to the grave without ever seeing a doctor. Many white physicians refused to treat black patients and there was a shortage of black doctors. In addition, there were only a handful of black hospitals in the South, and white hospitals refused to accept black patients or if they did, black patients were assigned to segregated wings that were often overcrowded.
Poverty as well as racism could be blamed for the lack of medical care in the South. Physicians often required their patients to pay as they received treatment. Poor people could not afford to do that. Therefore, many simply bore their illnesses or used folk medicine to cure themselves. To combat these and other problems, the federal government, in 1912, united all its health-related services under the Public health Services (PHS). The Public Health Services made much progress in the medical field. It waged war on hookworms, pellagra, and a host of other illnesses.
Its most effective goal was to wipe out venereal diseases. Syphilis was a killer and it was also capable of inflicting blindness, deafness, and insanity on its victims. It was associated with prostitution and loose morals. Therefore, it was a serious threat to the institution of the family. In 1918, progressive reformers were successful in pushing, through Congress, a bill which created a special division of venereal diseases within the Public Health Services. The PHS would launch its war on syphilis. The initial success was impressive.
They established more than 200 health clinics by 1919, and treated more than 64,000 patients who could not otherwise afford the health care. In the late 1920s, the PHS joined forces with the Rosenwald Found which was a philanthropic foundation based in Chicago. The purpose of the partnership was to fight syphilis in blacks in the South. In 1928 , the PHS had just completed a study of the prevalence of syphilis among more than 2,000 blacks employees of the Delta Pine and Land Company in Mississippi. About 25% of those sampled had tested positive for syphilis.
The PHS and the Rosenwald fund collaborated in treating these and this resulted in an expansion of the treatment program to five counties in the South: Albermarle County, Virginia,; Tipton County, Tennessee; Pitt County, North Carolina; Glynn County, Georgia; and Macon County, Alabama. Most doctors assumed that blacks suffered a much higher infection rate than whites because of the age-old belief that blacks were more sexually promiscuous than whites and once infected, blacks remained so because they were either too poor or too ignorant to seek medical care.
After the number of blacks who were affected had been ascertained, the PHS, with the help of the fund would then offer free treatment to those so diagnosed. Tuskegee was the county seat of Macon County, Alabama and the home of Tuskegee Institute (now Tuskegee University). Thirty-five per cent of those blacks tested in Macon County were found to be infected. This was the highest incidence in the six communities studied.
Although Tuskegee Institute boasted of a well-equipped hospital that could provide low-cost health care in the region, Macon County was home to the worst poverty and the most sickly residents that the PHS had found anywhere in the south. Dr. Taliaferro Clark Before the treatment could be implemented, the Great Depression began. The Rosenwald Fund was especially hard hit and could not provide the financial support that had been offered. Without the fund, the PHS did not have the resources to carry out the treatment program. Dr.
Taliaferro Clark of the PHS suggested that the treatment project could be partially salvaged by conducting a study on the effects of untreated syphilis on living subjects. There was hope that with this documentations, Congress would get them the funds they needed to run the program. The scientific study was to be done on black males. Many white southerners, including physicians, believed that although practically all blacks had syphilis, it did not harm them as severely as it did whites. Therefore, this experiment would not do real harm to black people.
Armed with these good intentions, the PHS launched its study, known as the Tuskegee Study, in 1932. Tuskegee Institute was solicited for support. Since it had a history of service to local African-Americans, its participation insured a smooth execution and acceptance. In return for its support, the institute was to receive money, training for its interns, and employment for its nurses. In addition, church and community leaders and plantation owners were recruited and encouraged to participate.
In order to get their support and cooperation, the PHS informed them that they had returned to the county in order to treat those who were infected. Black people were too poor to afford coffins and were simply wrapped in cloth and buried. They were offered a decent burial If the participated in the project. Nurse Eunice Rivers The study involved more than 399 poor black sharecroppers with latent syphilis and 201 men without the disease who served as the control group.
Instead of telling them that they had syphilis, those in the program were told that they had “bad blood,” a catch-all phrase which rural blacks used to describe a host of ailments that they could not understand. There were black doctors and nurses (the famous Miss Evers) who were part of the Tuskegee hospital who knew the truth and should be considered co-conspirators. The “subjects” were offered free medical examinations, food and transportation to and from the testing sites. Burial stipends were used to get permission from family members to perform autopsies on the study participants.
Nurse Eunice Rivers was selected to help monitor the participants. She secured permission for autopsies to be done for a $50. 00 burial stipend. The possibility of a burial policy would allow these men to receive “a decent burial,” which was considered a blessing to African Americans. The fact that African-Americans had almost no access to medical care resulted in an increased willingness on the part of African-Americans to participate in the study. For many study participants, the examination by the PHS physician was the first medical examination they had ever undergone.
The project, which was supposed to last six months, went on for 40 years. While at first, the PHS had no intentions of treating these victims, state health officials demanded, as a price for their cooperation, that the PHS provide enough medication to render them non-infectious. Consequently, all of them received a little treatment but not enough to cure them. Although the men entered into the agreement freely, there was no evidence that the 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. Many of those who worked closely with the project became fascinated with the study that they wanted to study the long range effects of syphilis. Some rationalized what they were doing by saying that the men were too poor to afford proper treatment or that they were beyond the point at which treatment would be beneficial. There is a belief that some of these doctors ceased to see the black men as human and looked at them as clinical material.
When asked why they had to receive several “back shots” (spinal taps), researchers repeatedly lied to the men, claiming the shots were “therapeutic” when in fact the spinal taps gave insight to infection from the spinal canal into the brain. When the Tuskegee Study began, the standard therapy for syphilis consisted of painful injections of arsenical compounds, supplemented by topical applications of mercury or bismuth ointments. Although this treatment was less effective than penicillin would prove to be, in the 1930s, it was the most widely recommended treatment and every medical textbook indicated this.
The results were that at least 100 black men died as a direct result of syphilis, and scores of others went blind or insane or endured chronic ill health from syphilis related complications. Through their suffering, PHS made no attempt to treat them, and on several occasions, took steps to prevent them from getting treatment on their own. There were reported cases of a list being circulated to other hospitals which identified them as a part of the study and therefore ineligible for treatment. During World War II, about 50 of the participants were ordered by their draft boards to undergo treatment for syphilis.
The PHS requested that the draft boards exclude study subjects from the requirement for treatment and the draft boards cooperated. When penicillin, the wonder drug hit the market Until the study was banned, health departments worked with the PHS to keep the study subjects from receiving treatment. There is no record of how many of the infected men passed syphilis to their sexual partners and to their children in utero. Some of the women who were infected passed it on to babies who developed congenital syphilis. Some babies were stillborn.
Parents were not aware of why their babies were ill or what may have killed them until years later. Of the babies who survived, there were those with serious health issues such as anemia, runny noses, skin sores, white patches in the mouth, inflamed arms and leg bones, swollen livers, jaundice and some were even born with unusually small heads. Doctors now said that if these babies had been treated with Bicillin, they could have been cured. Peter Buxton These 40 years were decades that the American consciousness was raised concerning the civil rights of black people and the ethical standards of the medical profession!
PHS published no fewer than thirteen papers concerning the study, some of which appeared in the nation’s leading medical journals and it was the subject of many sessions at medical conventions. The study ended in 1972 because Peter Buxton, known as the “whistle blower” (an expression used to identify those who expose corrupt practices of agencies), leaked the information to the press. He had been a venereal disease interviewer and investigator for the PHS. Despite his protest, the experiment continued until he exposed it.
Health officials at first tried to deny and defend their actions in the midst of much public outrage. However, because of the public’s attitude, they agreed to end their experiment. The forty year death watch was finally over, but the legacy continues. Congressional subcommittee meetings headed by Senator Edward Kennedy began in 1973. These resulted in a complete rewrite of the policy on working with human subjects. In that same year, a 41. 8 billion class action suit was filed in the U. S. District Court on behalf of the subjects.
In December, 1974, the U. S. overnment, in an out of court settlement, paid $10 million. As part of an out of court settlement, the survivors were finally treated for syphilis and offered burial services for all living participants. In addition, the men, and the families of the deceased, received a small cash settlement. There are presently, about seven survivors. Ms. Rivers testified in court The Tuskegee Study left behind some unanswered questions concerning racism in the medical profession and its serves as a reminder that class distinction and racism can cause one to negate ethical and scientific standards.
John Heller, director of the Venereal Disease unit of the PHS from 1943 to 1948 stated during an interview, “the men’s status did not warrant ethical debate. They were subjects, not patients; clinical material, not sick people. ” The suspicion and fear generated by the Tuskegee Study are evident today. In 1990, the Southern Christian Leadership Conference conducted a survey among 1056 African-American Churches in five cities. They found that 34% of the respondents believed that AIDS was an artificial virus, 35% believed that AIDS is a form of enocide introduced by the government to exterminate black people and 44% believed that the government is not telling the truth about AIDS. It is argued that the study is a significant factor in the low participation of African Americans in clinical trials, organ donation efforts, and routine preventive care. Because of the name of the project, Tuskegee Institute (now Tuskegee University) has a cloud about its name. Although the name of the study points to Tuskegee, it was a United States health Service project.
The facilities and staff of the Tuskegee Institute were involved, primarily under the directions coming from the government under the auspices of the USPH. This tragedy had obscured the achievements of the university in improving health care of African-Americans. In 1996, the Tuskegee Syphilis Study Legacy Committee made a final report to President Bill Clinton. They recommended a public apology and that a center be established at the university to preserve the national memory of the study so that people will not forget. On May 16, 1997 the President made that apology.
On hand for the occasion was Vice President, Al Gore and Dr. David Satcher of the Center for Disease Control. Macon County resident, Herman Shaw was 94 years old at that time. Shaw was one of the survivors. He said of Mr. Clinton’s apology, “in my opinion, it is never too late to work to restore trust and faith. ” But Shaw also called for a permanent memorial so that future generations might learn about what happened. “We were treated unfairly, to some extent like guinea pigs,” Shaw said. “The wounds that were inflicted upon us cannot be undone. ” Others on hand or who viewed by satellite, were Carter Howard, 93; Charlie Pollard, 91 and Fred Simons, 100.
Simmons said he was anxious to receive the apology. It helped make up years of discomfort—and that scary month almost 50 years ago when he was bleeding from sores, unable to walk or eat and nearly died from starvation. His grandson, Michael said, “They thought he was going to die, but then one day he started getting better. There was never any cure. We just prayed a lot. That worked better than anything. ” President Clinton announced the creation of a government bioethics fellowship for minority students funded by the Department of Health and Human Services and a proposed $200,000 planning grant for a bioethics center at Tuskegee University.
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