Final Report of the Tuskegee Syphilis Study Legacy Committee — May 1996

In 1932, the United States Public Health Service (USPHS) initiated the Tuskegee Syphilis Study to document the natural history of syphilis. The subjects of the investigation were 399 poor black sharecroppers from Macon County, Alabama, with latent syphilis and 201 men without the disease who served as controls. The physicians conducting the Study deceived the men, telling them that they were being treated for “bad blood.”² However, they deliberately denied treatment to the men with syphilis and they went to extreme lengths to ensure that they would not receive therapy from any other sources. In exchange for their participation, the men received free meals, free medical examinations, and burial insurance.³

On 26 July 1972, a front-page headline in the New York Times read, “Syphilis Victims in U.S. Study Went Untreated for 40 Years.” ⁴ The accompanying article publicly revealed the details of the Tuskegee Syphilis Study—“the longest nontherapeutic experiment on human beings in medical history.”⁵ In the almost 25 years since its disclosure, the Study has moved from a singular historical event to a powerful metaphor. It has come to symbolize racism in medicine, ethical misconduct in human research, paternalism by physicians, and government abuse of vulnerable people.

The Tuskegee Syphilis Study continues to cast its long shadow on the contemporary relationship between African Americans and the biomedical community. Several recent articles have argued that the Tuskegee Syphilis Study has predisposed many African Americans to distrust medical and public health authorities.⁶ The authors point to the Study as a significant factor in the low participation of African Americans in clinical trials and organ donation efforts and in the reluctance of many black people in seeking routine preventive care. As one AIDS educator put it, “so many African-American people that I work with do not trust hospitals or any of the other community health care service providers because of that Tuskegee experiment. It is like … if they did it then they will do it again.”⁷

The Tuskegee Syphilis Study Legacy Committee is dedicated to preserving the memory of the Study while moving beyond it, transforming the legacy into renewed efforts to bridge the chasm between the health conditions of black and white Americans. To this end, the Committee is pursuing two inseparable goals:

1. to persuade President Clinton to publicly apologize for past government wrongdoing to the Study’s living survivors, their families, and to the Tuskegee community, and
2. to develop a strategy to redress the damages caused by the Study and to transform its damaging legacy.

In his recent apology for the government’s role in human radiation experiments (1944-1974), President William J. Clinton claimed that “the American people … must be able to rely upon the United States to keep its word, to tell the truth, and to do the right thing,” and that “when the government does wrong, we have a moral responsibility to admit it.”⁸ President Clinton is not alone in his belief that an apology for past wrongs is “doing the right thing.” Recently, the Southern Baptist Church apologized to all African Americans for its stand on slavery during the Civil War and the Prime Minister of Japan similarly apologized to all the people of the United States for the attack on Pearl Harbor.⁹

And yet, these apologies do not merely acknowledge wrongdoing: they act as a first step toward healing the wounds inflicted. President Clinton, for example, saw his apology as “laying the foundation stone for a new era” in trying to regain the trust of the country.¹⁰

It is within this context of doing the right thing, redressing past injuries, and regaining trust that the Committee adamantly believes that a Presidential apology to the victims of Tuskegee is critical to heal the devastating wounds that remain from this shameful episode in the history of medical research.

1. A Presidential Apology for the Tuskegee Syphilis Study

   1. Moral and physical harms to the community of Macon County

      It is clear that the U.S. government scientists irreparably harmed hundreds of socially and economically vulnerable African-American men in Macon County, their family members, and their descendants by deliberately deceiving them and withholding from them state of the art treatment. 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 therapy was less effective than penicillin would prove to be, in the 1930s every major textbook on syphilis recommended it for the treatment of the disease. After penicillin became available, the researchers withheld its use as well. Published medical reports have estimated that between 28 and 100 men died as a result of their syphilis.¹¹ Due to a lax study protocol, we cannot be sure that all the men had latent syphilis. It is therefore entirely possible that the infected men passed syphilis to their sexual partners and to their children in utero.¹² Thus the physical harm may not be limited just to the men enrolled in the Study.

   2. No public apology has ever been made

      In the aftermath of a Department of Health, Education and Welfare task force report, a Senate hearing, and an out of court legal settlement, the U.S. government provided economic compensation and continues to give free health benefits to the surviving subjects and their families. However, no public apology has ever been offered for the moral wrongdoing that occurred in the name of government medical research. No public official has ever stated clearly to the nation that the Tuskegee Syphilis Study was morally wrong from its inception, and no public official has ever apologized to the survivors and their families. Yet, an apology is sorely needed. The Committee believes that an apology from the President could facilitate the healing of the victims and the nation.

   3. The harmful legacy of the Study

      The historical record makes plain that African American’s distrust of the medical profession predates the revelations of the Tuskegee Syphilis Study and involves a myriad of other social and political factors. Nevertheless, the Study has become a powerful symbol for the fear of exploitation in research and the deprivation of adequate medical care that is widespread in the African-American community. Recent articles argue that Tuskegee has created a climate of suspicion that taints the relationship between many African Americans and the medical profession. The Tuskegee Study is offered as the reason why few blacks participate in research trials,¹³ why the need for transplant organs by African Americans widely surpasses the supply,¹⁴ and why African Americans often avoid medical treatment.¹⁵ It is also offered as an explanation as to why rumors about genocide persist in the African-American community, ranging from the notion that AIDS is a plot to exterminate black people to the idea that needle exchange programs fuel a drug epidemic that disproportionately affects black neighborhoods.¹⁶ For many African Americans, the fact that the Tuskegee Study occurred at all proves that black life is not valued. The Committee believes that an apology combined with a strategy for addressing the damages of the Tuskegee legacy would begin the process of regaining the trust of people of color.

   4. The harm done to the community and the University

      Because the name of the study points to Tuskegee Institute (now Tuskegee University) rather than the United States Public Health Service, it clouds the funding and responsibility for the Study. Although facilities and staff of the Tuskegee Institute were involved, primary direction came from the government under the auspices of the USPHS. The notoriety of the Study obscures the achievements of the Tuskegee Institute in improving the health care of African Americans. These achievements include initiating National Negro Health Week, building the John A. Andrew Hospital, creating the John A. Andrew Clinical Society, establishing a nurses training school, and organizing a school for midwives.

2. The Apology: Context and Opportunity

   The Committee urges President Clinton to apologize on behalf of the American government for the harms inflicted at Tuskegee. The apology should be directed to those most directly harmed: to the elderly survivors of the Study, to their families, and to the wider community of Tuskegee and its university. Also included within the apology should be all people of color whose lives reverberate with the consequences of the Study.

   As the highest elected official of the United States, the President should offer the apology for the Study which was conducted under the auspices of the United States government. The significance of a presidential apology was recognized recently when the President apologized to those harmed by Cold War radiation experiments as a way to regain confidence of the American people. In the context of President Clinton’s stated desire to bridge the racial divide, this apology provides the opportunity to begin to heal the racial wounds that persist in this country.

   Given the ages of the living participants and the period of time since the Study was disclosed, we believe that the apology should be offered swiftly. There are only eleven survivors; a twelfth died as recently as March 3, 1996. We recommend that the government issue the apology from Tuskegee University, perhaps linked with an early meeting of the new National Bioethics Advisory Commission (NBEAC). Because the Tuskegee study is a starting point for all modern moral reflection on research ethics, a meeting of the NBEAC at Tuskegee in conjunction with a Presidential apology would be an ideal new beginning.

3. Transforming the Legacy

   Although a public apology is necessary to heal the wounds of Tuskegee, it alone would not be sufficient to assure the nation that research like the Tuskegee Syphilis Study will not be duplicated. Despite the significance of a Presidential apology, it must not be an isolated event. Consequently, the Committee also recommends the development of a mechanism to move beyond Tuskegee and to address the effects of its legacy. The Committee strongly urges the development of a professionally staffed center at Tuskegee University, focused on preserving the national memory of the Study and transforming its legacy.

   Regret for past mistakes must be accompanied by a determination to prevent future wrongs. Until now for black Americans the legacy of the Tuskegee Syphilis Study has been a negative one–a symbol of their mistreatment within American society. The proposed Center could help transform the legacy of Tuskegee into a positive symbol for all Americans by demonstrating the importance of acknowledging past wrongs, rebuilding trust, and practicing ethical research.

   The new Center’s mission would be to preserve the national memory of the Syphilis Study for public education and scholarly research, and to analyze and disseminate findings on effective and ethically acceptable ways to address the profound mistrust that is the tragic and enduring legacy of this Study, especially among African Americans and other persons of color. (See Appendix 1.)

   Although the Committee sees the creation of a Center as the most valuable attempt to redress the damages of Tuskegee, we envision several possible concurrent programs. These include:

   1. A Minority Health Initiative, similar in scope to the newly established Women’s Health Initiative;
   2. Training programs for health care providers to better understand the social and cultural issues of providing health care and of conducting research in communities of color;
   3. A clearinghouse to help investigators conduct ethically responsible research.

   The Committee recommends that funding for the Center must combine government and private funding. The announcement of a federal challenge grant would be very useful as a catalyst for future fundraising efforts. It is undeniable that the Tuskegee Syphilis Study has adversely affected the attitudes that many African Americans hold toward the biomedical community and the United States government. But despite the long shadow that it casts, we now have an opportunity to challenge this legacy and create a more beneficial one.