December 6, 1999
Volume 52, No. 14
Thomas: Tuskegee atonement begins with an apology
In the 1940s, when Nazi doctors went on trial for experiments on humans, the world heard the term "research crime" for the first time. Most Americans believed such abuses could never happen here. On a hot day in July 1972, however, the national front-page news described an experiment sponsored by the U.S. government.
In Macon County, Ala., a sample of black men went untreated for syphilis. Over four decades, as some of them died, the government went to great lengths to ensure that men in the "Tuskegee Study" were denied treatment, even after penicillin became the standard of care in the mid-1940s.
A quarter-century after that public revelation, on May 16, 1997, President Bill Clinton issued a formal apology for the Tuskegee Study of Untreated Syphilis in the Negro Male, the longest nontherapeutic experiment on human beings in the history of medicine and public health. The study, conducted under the auspices of the U.S. Public Health Service (PHS), was originally projected to last six months but spanned to 40 years, from 1932 to 1972. The men were never told they had the sexually transmitted disease.
The 600 black men in the study (399 with syphilis and a control group of 201) were the sons and grandsons of slaves. Most had never been seen by a doctor. When announcements were made in churches and cotton fields about a way to receive free medical care, the men showed up in droves. Little did they know the high price they would pay over the next four decades as they were poked and prodded by an endless array of government medical personnel. Even as some men went blind and insane from advanced syphilis, the doctors withheld treatment, remaining committed to observing their subjects through to the predetermined "end point"-autopsy. To ensure the families would agree to this final procedure, the government offered burial insurance--at most $50--to cover the cost of a casket and grave.
The project finally stopped after Peter Buxtun, a former PHS venereal disease investigator, shared the truth about the study's unethical methods with an Associated Press reporter. Congressional hearings led to legislation strengthening guidelines protecting human subjects in research. Fred Gray, a civil rights attorney, filed a $1.8 billion class action lawsuit that resulted in a $10 million out-of-court settlement for the victims, their families and their heirs.
During the ceremony in the East Room of the White House, the president directed his words to Carter Howard, Frederick Moss, Charlie Pollard, Herman Shaw, Fred Simmons, Sam Doner, Ernest Hendon and George Key, the study's sole survivors, all of whom are over 90 and the first five of whom were present for the occasion.
Clinton and the others present experienced forgiveness from men who suffered at the hands of PHS doctors. The president placed responsibility for the abuse on the medical research establishment, stating, "The people who ran the study at Tuskegee diminished the stature of man by abandoning the most basic ethical precepts. They forgot their pledge to heal and repair." The government, Clinton announced, was providing a $200,000 grant to help establish a center for bioethics in research and health care at Tuskegee University as part of a "memorial" to the victims. Shaw expressed gratitude to Clinton "for doing [his] best to right this wrong tragedy and to resolve that Americans should never again allow such an event to occur."
Parts of Macon County still look like they did in 1932. The route to Tuskegee Square pushes past shaky mobile homes and a decrepit motel, between eroding embankments of red clay that look like gashes of flesh. The eight survivors of the study have lived long enough to see the final chapter in the history of race and medicine in America. Today, however, they remain economically poor, living in the same town and attending the same churches where they were recruited in 1932.
For many black people, the Tuskegee legacy generates anger that hangs in the air like smoke. People are not laboratory animals. No one should suffer when a proven treatment is available, as penicillin was for syphilis by the early 1940s. Using people in medical research without their informed consent, and engaging in subterfuge to do so, is ethically unconscionable, particularly when the people are vulnerable and lack access to any other medical care.
Remarkably, some people still say the Tuskegee Study was a valid and well-intentioned effort to learn more about a disease that was rampant among black men in Macon County. They say the men were not harmed and probably were helped by taking part in the study. The government doctors were viewed as progressive compared to local physicians. The Rosenwald Fund that financed the study was dedicated to increasing the number of "Negro" health professionals in the South. It is ironic that during the study the men had regular visits from government doctors. Today, Tuskegee has no 24-hour health care. The men in the study trusted their doctors; today, syphilis remains an epidemic in areas where many black people do not trust the treatment.
For far too many African Americans, the Tuskegee legacy casts a shadow over biomedical research, medicine and public health practice. It is used as reason not to take advantage of early treatment for preventable diseases, not to participate in clinical research. The underrepresentation of blacks as blood donors, their reluctance to sign organ donor cards, their fear of being tested for AIDS and their hesitancy to have their children immunized threatens the health and well-being of us all. Trust, once given unconditionally, now must be earned. How can black people trust what their doctors tell them, what public health agencies tell them, when they know the men in the Tuskegee Study had syphilis and were not treated?
Rebuilding trusts begins with an apology from a president who was not even alive in 1932. Over the years, the Tuskegee legacy has undergone transformation from science to conspiracy to metaphor. It is an American tragedy made of a volatile confluence of race and medicine. It is part of the collective memory of many African Americans, fueling suspicion and fear toward medical and public health research. It is still being deeply woven into the tapestry of American life. An indelible pattern is evolving as each of us responds to the contingencies and values exposed by Tuskegee. In a way, the legacy connects us to people who suffer under oppression-from Africans on the Middle Passage to Native American tribes forced to extinction, to Holocaust victims, to survivors of apartheid.
An apology is an expression of our humanity, a balm on the sores of resentment and retaliation. It will not heal all wounds but is an essential gesture in the healing process and a cue to action for the rest of us to move toward atonement and racial reconciliation. It may be the first step in addressing the fear and mistrust that shape the behavior and attitudes of many African Americans not only toward participating in medical research but also toward receiving the health care they need and deserve.
Stephen Thomas is an associate professor in public health. This essay first appeared in Academic Exchange.