So last week we learned about the African healer who helped create a method to save colonizers from the smallpox pandemic that ensued in the late 1700s. But this week we will discuss how the tables turned in the 1930s when several unknowing black men were used as guinea pigs to learn about the long term effect of syphilis. A guinea pig for an unethical study that only ended less than 50 years ago from today.
Back in 1928, the Oslo Norway Study helped researchers understand the manifestations of untreated syphilis in white males. Information was pieced together by histories of previous patients that lived in Norway. With the knowledge that was gained from this study, the U.S. government found it imperative to learn about the black male and the long term effect of untreated syphilis. During this time, it was believed that the effects of syphilis depended on the race of those infected. Physicians believed that syphilis had a more pronounced effect on the cardiovascular systems of black people than on their central nervous systems as did with whites. The U.S. Public Health department with the help of Tuskegee Institute, modern day Tuskegee University, decided to conduct their study in Macon County, Alabama. It would be a 6 month study and would last no longer than that.
Six hundred impoverished black sharecropper males enrolled in the study. Many of these sharecroppers were descendants of former slaves who once tilled the same land which they worked on, day in and day out. As an incentive of the study, the participants were promised free medical care. Of the men that were initially enrolled, 399 were infected with syphilis, while 201 were left uninfected as the control group. None of the participants were informed of their diagnosis, despite the risk of infecting others. They were instead told that they were being treated for “bad blood”. A term that referred to various conditions such as syphilis, anemia, and/or fatigue. The collection of illnesses the term included were a leading cause of death within the southern black community.
As the study continued, medications were given to participants with arsenic-based compounds such as arsphenamine to treat the symptoms but not eradicate the disease. Treatments such as mercurial ointments and bismuth were used as well. These mildly effective, highly toxic treatments were provided only to quell any suspicions by participants or outsiders that they were infected with syphilis. Additionally, participants were administered disguised placebos, ineffective methods, and diagnostic procedures, which were misrepresented as treatments for “bad blood”.
The study was initially planned to last for only 6 months, but it would not end until 40 years later. During these years, participants remained ignorant of the study clinicians’ true purpose, which was to observe the natural course of untreated syphilis. What is worse is that clinicians knew of the cure which was penicillin, but instead decided to continued on withholding treatment and information about penicillin. In addition, scientists prevented participants from accessing syphilis treatment programs available to other residents in the area reasoning with participants that it would benefit mankind if they did not receive any outside treatments.
As World War II rolled around, 250 of the men who where participants of the study registered for the draft. At military induction centers some were notified for the first time that they had syphilis and were ordered to obtain treatment for syphilis before they could be taken into the armed services. But in true fashion, Public Health Services researchers attempted to prevent these men from getting treatment. A Public Health Services representative was quoted at the time saying: “So far, we are keeping the known positive patients from getting treatment.” By 1947, penicillin had become standard therapy for syphilis. The U.S. government sponsored several public health programs to form “rapid treatment centers” to eradicate the disease. When campaigns to eradicate venereal (like syphilis) disease came to Macon County, Alabama, study researchers prevented their subjects from participating.
In 1972, the revelations of the study were broadcasted to the press by whistleblower Peter Buxtun. It would result in the final termination of the study in November of 1972. By the end of the study, numerous black men had died of syphilis, 40 wives contracted the disease from their husbands, and 19 children were born with congenital syphilis. 100 others died of related complications and only 74 of the participants were still alive by the end of 1972.
The Tuskegee Study was a major violation of ethical standards, and has been cited as “arguably the most infamous biomedical research study in U.S. history.” It led to major changes in U.S. law and regulation concerning the protection of participants in clinical studies. In 1974, Congress passed the National Research Act and created a commission to study and write regulations governing studies involving human participants.It also led to the 1979 Belmont Report and to the establishment of the Office for Human Research Protections (OHRP). Now studies require informed consent, communication of diagnosis and accurate reporting of test results.
It’s revelation has also been an important cause of distrust in medical science and the US government amongst black Americans, which reduces their participation in medical studies, which in turn negatively affects understanding of their health and treatment of their conditions. Which rightfully makes sense as this is yet another story about medical injustices that were done to blacks in America such as smallpox infection to win the American revolution (I will write about this one day) and the many procedures done on black female slaves to understand the woman’s reproduction system, leading the modern day OBGYN profession. Who knows what else was done that may not have been exposed to the public.
The two main perpetrators of the study was Taliaferro Clark, the head of the US Public Health Services (USPHS) in Washington D.C. who initiated the study and would resign after the first six months of the study when the Rosenwald Fund withdrew its financial support and Thomas Parran Jr., who was the former head of the venereal diseases section of the USPHS who determined the location where the study should occur, after being asked by the Rosenwald Fund to pick a location out of five southern states. Oliver C. Wenger was also a perpetrator who took the lead in developing study procedures with his staff. Wenger continued to advise and assist the study when it was adapted as a long-term, no-treatment observational study after funding for treatment was lost. Raymond A. Vonderlehr was another who was the one who advertised the study as “special free treatment.” and convinced local black doctors to deny syphilis treatments to participants in the study. In order for big conglomerates to do evil, they must have henchmen to do their bidding. Therefore, the blame does not only lie with the white professionals who were in charge of the program.
The blame also rests with several black health workers and educators who played a critical role in the study’s success. Not much is known about how much they exactly knew about the details of the study but I am sure some were administering the disease into some of their distant family members knowingly, especially as a health care professional. Robert Russa Moton, then president of Tuskegee Institute, and Eugene Dibble, head of the Institute’s John A. Andrew Memorial Hospital, both lent their endorsement and institutional resources to the government study. Registered nurse Eunice Rivers, was recruited and became the main point of contact with the participants. Rivers played a crucial role in the study because she served as the direct link to the black community in that area. Vonderlehr considered her participation to be the key to gaining the trust of the subjects and promoting their participation. As a part of “Miss Rivers’ Lodge,” participants would receive free physical examinations at Tuskegee University, free rides to and from the clinic, hot meals on examination days, and free treatment for minor ailments. Rivers was also key in convincing families to sign autopsy agreements in return for funeral benefits. As the study became long-term, Rivers became the chief person who provided continuity to the participants. She was the only study staff person to work with participants for the full 40 years. But let us remember the main blame still lies with the U.S. government. Without their initial unethical idea to unknowingly study black males, there would have never been the need for cronies to do their bidding.
As part of the settlement of a class action lawsuit subsequently filed by the NAACP in 1973 on behalf of study participants and their descendants, the U.S. government paid $10 million and agreed to provide free medical treatment to surviving participants and surviving family members infected as a consequence of the study.
On May 16, 1997, President Bill Clinton formally apologized on behalf of the United States to victims of the study, calling it shameful and racist. “What was done cannot be undone, but we can end the silence,” he said. “We can stop turning our heads away. We can look at you in the eye, and finally say, on behalf of the American people, what the United States government did was shameful and I am sorry.”
With this type of history, would you be moved to take any medication that the U.S. government wants to give you as a black person? A government who disapproved of the human experiments that were done in Europe during WWII but still allowed a study like this to occur at home to only a certain a group of people similar to the Nazis? Orrrr have we grown as a nation and this is just past history? What do you think?
Source:
Untold Stories of Histories Past 