Gender, Race, and Class in Today’s America

The Tuskegee Study

“In order for America to reach its fullest potential we must truly be one America—black, red, and white together, trusting each other, caring for each other, and never allowing the kind of tragedy which happened to us in the Tuskegee Study to ever happen again.”  --Mr. Herman Shaw, survivor.

As a project of the Public Health Service, a federal service, the original Tuskegee Syphilis study was originally intended to last from between six-eight weeks. Syphilis had become a national health problem, and clinics and studies were set up throughout the South.  The Tuskegee Study wanted to find out if it was true that African Americans and whites tended to have different long-term outcomes from the disease.  It was to be a contrast with a study with white Norwegians.

The doctors doing the research sought 400 infected black men who had had the disease at least five years and had not been treated or not been treated in any significant way. The men were told it was another public health program, something they were used to and respected because they thought they would receive free medical treatment (unrelated to their syphilis).  Fred Gray, the lawyer who represented the survivors in a class-action lawsuit and beyond, also speculated that for these hard-working, mostly poor men in Macon County, Alabama, it was something different, a distraction from their hard lives, so they were happy to participate, knowing nothing about the real purpose of the study. While the men thought they were receiving some medical treatment, treatment of syphilis had to be withheld to achieve the planned study results. Tuskegee University hosted the study but stayed away from the workings of the study itself. All levels of medical officials of public and private healthcare officials signed off on the study. White doctors in the area were brought into the loop, agreeing to avoid giving treatment that would interfere with the study. An agreement with the state determined that when participants were out of the study they would have to receive some treatment. Dr. Raymond Vonderlehr ran the study and convinced stakeholders to continue the study over forty years.  Since some participants never left the study, they were never offered treatment in those four decades.

In the second phase of the study, between 1933 and 1960, the study was extended indefinitely to see what could be learned.  They added a non-syphilitic control group.  Importantly, penicillin was discovered and became available, but it was never given to any participants.  Several times during these three decades there were campaigns out of Birmingham to treat the disease, but the participants were never allowed to participate. By the mid-1960s, the study had become “virtually a tradition within the PHS,” according to Fred Gray (48).¹  There was a new generation of doctors, and with them a new uneasiness with issues of race and civil rights. Continuation of the study was in question.  What to do about the men?  They still had not been told they had syphilis, and some had never heard of the disease.  And still, they were never asked to give their consent to participate.  Seniority and opportunity prevailed; the study continued.

Eventually, with all participants continuing with the study, Vonderlehr wrote, “The proper procedure is the continuance of the observations of the Negro men used in the study with the idea of eventually bring them to autopsy” (Gray 54).² Even though the disease could be treated by this time, Vonderlehr and the other stakeholders valued getting all they could from the outdated study over the wellbeing of the men after all these years.  One gimmick that both kept the men in the study and helped the researchers secure their bodies for autopsies was a burial insurance scheme.  The families received money for burials; the study benefitted from their bodies.

Outcomes

In 1972, after reading an article about the study in the newspaper, survivor Charlie Pollard, probably the best educated of the participants, walked into Fred Gray’s office and asked him to take on a lawsuit representing the participants and their families. Gray took on the lawsuit, which consumed most of his professional life until the 1990s. The crux of Gray’s case: the challenged parties “failed to obtain informed consent, inform them of the nature and purposes of the experiment, and inform them of the possible hazards and effects upon the health of the participants which might result from their participation” (Gray 88).³  The defendants included the United States of America, Casper Weinberger (Secretary of the Department of Health, Education, and Welfare), the state health officer and specific physicians.

After two decades, Gray was able to secure some peace of mind for the participants and their families, through settlement, not trial. First was a ten-million-dollar settlement, which grew with interest as it took so many years to track down the participants’ remaining descendants.  (He had asked for 1.8 billion dollars.) More than 6,000 individuals benefitted from this monetary distribution. Participants also received free burial expenses.  Another request of the survivors was met with the creation of two tangible memorials, the Tuskegee Human and Civil Rights Multicultural Center and the Bio Ethics Center at Tuskegee University.  It was important to these men to teach about their experience and influence change in medical research so that others did not become victims as they did. Gray stated, "This case also demonstrated that the judicial process is a viable means of rectifying wrongs perpetrated against citizens of this country regardless of their race and economic status” (134).⁴

Fred Gray and the four survivors he was working with were exceptionally touched by President Clinton’s apology on behalf of the government in 1997.  Clinton also promised and followed through on funding for the bioethics center at Tuskegee, and government research on how to re-establish trust in communities so that Black Americans would participate in medical studies to their benefit.  He also promised to strengthen bioethics training for American medical researchers.  But Clinton left us with a warning in 1997 that rings out to us today: “Science and technology are rapidly changing our lives with the promise of making us much healthier, much more productive, and more prosperous.  But with the changes we must work harder to see that as we advance we don’t leave behind our conscience.  No ground is gained and, indeed, much is lost if we lose our moral bearings in the name of progress” (Gray 165).⁵

Tuskegee Resources

Narratives from Dr. Vonderlehr and Mr. Shaw

Dr. Vonderlehr’s Introduction to the Tuskegee Study is clinical and objective in tone. He sounds reasonable when he says, “To prevent further occurrence of congenital syphilis women were treated and excluded from the study, as were young males with recently acquired infections. All participants were over 25 years of age, the majority over 40. . .included. . .those who would be at slight risk to themselves or the community if treatment continued to be withheld” (Gray, 145).⁶ By highlighting those who are omitted and dismissing others, Vonderlehr draws our attention away from the fact that indeed, men are going to suffer and die because of his study.  In contrast, Mr. Herman Shaw appeals to his audience on the occasion of the national apology with passion and a different kind of purpose.  He vehemently rejects the portrayal of the study and participants in Miss Evers’ Boys and pleads for reconciliation. “We were treated unfairly—to some extent like guinea pigs. We were not pigs. We were not dancing boys as we were projected in the movie, Miss Evers’ Boys. We were all men, and not boys, and citizens of the United States” (Gray 162).⁷ His syntax, repetition, and diction put him in front of us, pleading.

President Clinton’s Apology

Mr. Gray and the survivors were pleased by President Clinton’s speech—it’s tone, it’s content, and it’s promises.  As an English class we can look at various rhetorical appeals. His disarming tone invites listeners to appreciate the survivors: “Mr. Simmons just took his first airplane ride, and he reckons he’s about 110 years old, so I think it’s time for him to take a chance or two.  I’m glad he did” (Gray 163).⁸ He becomes more formal and appeals to a sense of ethics. In paragraphs nine and ten he admits clearly and emotionally the wrongs committed by the American government and makes the promises outlined above. Another of our essential questions is What can be done after the fact to restore medical justice?  Clinton’s speech gives us some answers, measured at least in part by the remaining participants’ feedback.

Miss Evers’ Boys

Miss Evers’ Boys, the movie, is a portrayal of the study and its participants that is offensive in its inaccuracies to both the participants and astute viewers. A great deal of Mr. Shaw’s speech addresses its racial problems and inaccuracies—and how the survivors were so angered by it as it perpetuated the lack of respect of the men rather than garnering it.