Who Lives, Who Dies, Who Tells Your Story

Tuskegee Part 3: The power struggle to determine how to define an unspeakable crime

Who would witness, review, and take responsibility for the 128 dead patients of the Tuskegee Syphilis Study? The 40 wives that had been infected? The 19 children born with congenital Syphilis? How do you count the innumerable loss of a loved one and a lifetime of pain and suffering at the hands of doctors?

In time, under bright, glaring lights in a White House room, 8 of the remaining survivors, their families, historians, and activists would tell their stories and accept a formal apology from the U.S. Government by way of President William Jefferson Clinton. There would be a $200,000 dollar grant for a bioethics center at Tuskegee, a commitment to community education, and a legacy of trained African American bioethicists. It was much more than the flimsy paper certificate and 25 dollars that the Public Health Service had given as a “thank you” to the participants years before. It was an acknowledgment of racist trickery.

That same year, a handful of researchers insisted on putting Tuskegee in the medical history’s context, pushing back against the already common refrain that the distrust in the African American community was “an overreaction” to a “single, isolated event”.

All of this could be said to have come out of the great work of the government-appointed panel chock full of political, academic, and economic leaders that reviewed and wrote up their findings on this medical tragedy. Harriet Washington ends part one of Medical Apartheid with the acknowledgment that this panel did successfully end the Tuskegee Syphilis Study and provided the momentum to get key laws on the books that to this day regulate U.S. human medical experimentation. But her own interviews with surviving members of the panel and the work of Dr. Benjamin Roy in his writing for the Journal of The National Medical Association show that this panel was severely, intentionally limited from day one in ways that prevented the kind of critical self-evaluation that could have broken patterns of property theft, medical abuse, and distrust in America.

The announcement of a formal investigation arrived on August 24th, 1972, led by Assistant Secretary for Health and Scientific Affairs, Dr. Merlin K. DuVal. He appointed nine members to dissect the study. From the beginning, Dr. DuVal was on the defensive. Seemingly forgetting that it was he who sanctioned the very abusive study he was reviewing, he felt “attacked” and threw out how he was loading his panel with “angry Blacks” so no one could “criticize”. The panel, as Washington points out, was not “loaded with angry Blacks”, but five African American professionals and four European American professionals who were “seasoned thinkers” in areas of science, law, medicine, and academia. Unfortunately, there was no historian. And worse, as time went on, it became very clear that Dr.DuVal and others had purposely limited the scope and ethical questions that the panel could examine. Yes, they were asked to determine whether the study should continue or be closed and if it had been right to continue the study after the penicillin treatment arrived. But the panel’s assignment was given only 12 meetings over a seven-month period to analyze a forty-year study and due to legal loopholes the PHS had created for themselves the most pressing ethical questions of the study were excluded from examination. Washington reminds us that the pressing issue was not whether the men had been properly informed of the danger they faced but the fact that they had never been informed that they were in an experiment at all.

Panel members expressed later their deep frustration with the way they were rushed, how meeting time would be used for officials to lecture them to “keep an open mind” and how they were forced to adopt softer language in their final report. There was the shocking revelation that while the panel had been told they could stop the experiment and it was to come to a halt, the experiment continued for a period of time in which the panel was meeting. Washington’s chapter “A Notoriously Syphilis-Soaked Race” goes into greater with quotes from the panelists and the confusing actions that were taken that at times seemed to sabotage the very reason the panelists were meeting.

The lack of a historian meant that there were critical timeline gaps and document cross-checks that simply did not happen. This made it harder for the panel to put into context exactly how and why so many people looked the other way or methodically slotted human beings through a clinical study that lacked proper clinical processes. The legacy of the final government panel report and investigations certainly includes an acknowledgment of wrongs. But were they the right wrongs? Why did the PHS withhold so many documents from the final investigation? And how did they get the legal cover to do this? The final report could give off and has given Americans the impression that the Tuskegee Syphilis Study was an unfortunate blunder of naive, irresponsible medical professionals who got ahead of themselves. At worst, the lie is that it was not inherently racist or evil, just a big misunderstanding of a population who never wanted treatment in the first place. At best, it was all an isolated hiccup where a rogue clinic was too curious and lost oversight. But when an investigation is directed to only look here, and not there, when they are unaware of an interconnected system of clinics that was in an international race for domination of a cure and a test, so much more disappears from history. And it’s that history, the story of a biotechnological arms race that we’ll get into next. The doctors weren’t only fighting diseases, but Nazis. And that justification and war have an impact on this story we think we know.