50 Years After the Tuskegee Revelations: Why Does the Mistrust Linger?

The COVID-19 pandemic proved that mistrust of the government’s public health efforts stems not only from manipulated political anger toward federal policies but also from personal and collective memories of medical and public health experiences.¹

Fifty years ago this past July, media outlets across the country reported that between 1932 and 1972 the US Public Health Service had been conducting an experiment in and around Tuskegee, Alabama, to study, but not treat, hundreds of African American men who had the noncontagious stage of latent syphilis.² Throughout its 40-year history, the government doctors lied to the men, telling them over and over again they were being treated for an unspecified sickness called “bad blood” that might or might not be syphilis. Many of the men had their lives shortened, and scores died from not being treated. Although they were supposed to be at the noncontagious stage, many passed the dangerous disease on to their sexual partners, wives, and children.³ After 1972, “Tuskegee” entered our public health and medical vocabulary as a metaphor for racism in medical research and public health practices.

After the Tuskegee Study was disclosed to the broader public, the efforts to acknowledge it and provide reparations began.⁴ The case demanded litigation. Fred Gray, the iconic Alabama civil rights lawyer who represented Rosa Parks and Martin Luther King during the Montgomery bus boycott, filed and settled a lawsuit that gave modest sums to the surviving subjects, controls, and the families of the deceased. In addition, the Center for Disease Control (later renamed Centers for Disease Control and Prevention) provided medical care, then health care, for any issues to the remaining men and any of their wives and children who had contracted syphilis. A badly flawed federal report followed, evaluating some of the research malpractice embedded in the Tuskegee Study. Several years later, knowledge of the Tuskegee Study was instrumental in pushing the government to establish guidelines that require the principles of justice, beneficence, and respect for persons in federally funded human participants’ research.

THE LEGACY BEGINS

These measures were too modest and too few to prevent the Tuskegee Study’s ongoing damage to African Americans because it followed on so many other experiences.⁵ When a medical procedure harms or kills an individual patient, a malpractice lawsuit may provide financial compensation to the victim and their family. Often, only the family and the doctor or hospital know about it. When a study that injures or kills scores of its subjects is conducted by a government agency, however, the damage extends far beyond the immediate victims. An entire populace or group can have their trust in government shattered and collective memories, both false and true, become the truths that shape their response to offers of positive health interventions when new health crises arise.⁶

The rumors about what happened in Tuskegee began as soon as the news broke 50 years ago, especially the false belief that the men were actually infected by the government doctors, rather than had the disease already. This belief is reinforced time and again whenever a photo taken by the Public Health Service in the 1950s that shows a White doctor doing a blood draw with a syringe on a Black man’s arm is viewed. If you do not look closely, it looks as if an injection is being administered. Then, when the AIDS epidemic erupted and spread in the early 1980s, researchers found that memories of the Tuskegee Study vitiated the trust many African Americans had in offers of health care.⁷ Many African Americans, including educated professionals, believed that HIV was a manmade disease created in laboratories for the explicit purpose of perpetrating genocide on Black people.⁸

After these rumors circulated, especially that the study’s men had been given the disease by the government, “Tuskegee” provided a partial answer to why this theory about HIV had traction. Yet, many in Black communities who were disposed to believe the worst of their government had a much deeper vision of the past linked to their day-to-day lives. Their perspective reached back to their ancestors who were captured by slave traders in Africa; to the horrors of the “middle passage”; to those trapped for centuries in the nightmare of slavery; to the dashed hopes of “40 acres and a mule” after the Civil War; to the economic impoverishment created by sharecropping, the crop lien system, and convict labor; to Jim Crow laws, lynch laws, and the erection of legal barriers that restricted African Americans’ right to vote for the better part of a century; to knowledge of other medical horror stories; and to the drug wars that fueled mass incarceration. Then there is, of course, most importantly, the mistreatment in individual recent medical encounters that layered on the collective past.

In the 1990s, as the 20th anniversary of the Tuskegee Study rolled around, documentary film makers provided a visual memory. The federal doctors who were involved and still alive expressed little to no remorse in their filmed interviews. Angered by this response, a group of historians and health providers, aided by the Black Congressional Caucus, successfully lobbied President William J. Clinton to offer a formal federal apology in 1997 to the last six surviving subjects, their families, and the entire African American community.⁹ That was an important gesture, but it could not end the mistrust. It was only one step toward truth and reconciliation. It merely acknowledged the past. It did not change the present nor shape the future.

COVID-19 AND RENEWED MISTRUST

When the COVID-19 pandemic hit 23 years later, the Tuskegee Study seemingly once again complicated the government-sponsored vaccine rollout in many African American communities.¹⁰ Working to overcome misinformation, suspicions, and mistrust, frontline physicians and other health providers offered reassurances that the vaccine was safe and effective. Indeed, the leaders of the Voices for Our Fathers Legacy Foundation, the organization that represents the descendants of the men in the Tuskegee Study, made a public service announcement to explain why they were taking the vaccine and why others should as well.¹¹ Despite these efforts, many doubters in Black communities remained unpersuaded, prompting some journalists to opine that African Americans were trapped in the past, unable to escape raw memories of the rancid racism that had blighted Black lives throughout US history.¹²

Yet the problem was not limited to abuses in the distant past. For many African Americans, the absence of trust in the government’s medical policies and directives flowed from their everyday lives and was tied to the here and the now. Significantly younger mortality rates for both Black men and women compared to Whites, cancers diagnosed later and treated less aggressively, disturbingly higher maternal and infant mortality rates, complaints of pain routinely discounted—the list goes on and on, and the disparities have gotten worse.¹³ Nor are the problems limited to diminished life expectancy and the low quality or lack of medical care. The outrages are as fresh as the latest state laws to hinder African Americans from voting or the fear of what might happen if they or their child got stopped by the police for driving while Black.¹⁴

RESTORING TRUST

Once trust in medical professionals and the government is weakened, how can it be created or restored? President Clinton’s formal apology was an important, albeit insufficient, first step. This past June, there was a moving ceremony in the city of Tuskegee itself that was covered by the Associated Press and widely reported in the press.¹⁵ The Milbank Memorial Fund, a New York City‒based public health foundation, acknowledged the role it had played in supporting the Tuskegee Study by financing the burial stipends that were used to induce the families to allow autopsies on the study’s men to further the research.¹⁶ Accepting the apology and a major contribution the Fund made to their education fund, the Voices for Our Fathers Legacy Foundation was gracious in its response to this attempt at healing through historical reparations.

In the half century since it ended, the Tuskegee Study has become our nation’s most powerful symbol of scientific racism, moral blindness, and mind-numbing arrogance in the name of “science.” If its tragic story is going to promote change for the good, however, it must serve as a reminder to public health and medical communities of the long-term consequences of what we do. We need to provide care instead of harm, and we must acknowledge the structural racism that underlies the mistrust. What we do every day in our public health and medical practices is what matters. Fifty years from now, when the 100th anniversary of the Tuskegee Study arrives, we hope people will remember its history as the disparities become history as well.