The Lingering Pain Of The Tuskegee Study

TWENTY years ago, a whistle-blower in the Public Health Service had a chat with a reporter from The Associated Press. Headlines blossomed on the front pages of The Washington Star and The New York Times. As a result, the American public finally learned about the Tuskegee study, a shocking and profoundly immoral research project. Some 400 men, suffering from syphilis, were deliberately left untreated for 40 years so researchers could study the disease.

How could people have done this? Writing in a special section on the subject in last month's Hastings Center Report, a prominent journal dealing with medicine, biology and ethics, Columbia Law Professor Harold Edgar says the best answer to that question is the most obvious one. The researchers "did not see the participants as part of `their' community or, indeed, as people whose lives could or would be much affected by what the researchers did." In other words, they were poor and black and therefore alien.

The study focused on 400 males living in Macon County, Ala., most of them poor, all of them black. They had been promised "special free treatment" for syphilis, but in fact effective treatment was withheld so that the course of the disease could be studied. As incentives, the men were promised free transportation, free hot lunches and free burial.

The "special free treatment" consisted of spinal taps, conducted without anesthesia, so that researchers could check the neurological effects of syphilis as it spread. An article by two public health experts calls the study "the most notorious case of prolonged and knowing violation of subjects' rights" in medical history.

Others have cited the study as the longest-running "nontherapeutic experiment" ever conducted, but that is not quite accurate. At the outset of the project in 1932, the men were treated with mercury and arsenic-based remedies. These crude and inadequate medicines were the best available at the time. But when it became clear in the 1940s that penicillin was a safe and effective treatment, it was withheld.

The study was, in Professor Edgar's words, "racist to the core, in that no such program could possibly have continued so long but for the central fact that participants were African Americans." But he calls this an irony, since the researchers involved, far from being vicious racists, were personally committed to expanding public health services for blacks and had, in fact, gone to the trouble of getting research help from the black community.

The news that many of the researchers were high-minded do-gooders only adds to the horror. The research was undertaken, or stumbled into, in the wake of an earlier study of untreated syphilis done in Oslo, Norway. That study suggested that nothing adverse happens to two of every three men with syphilis who take no treatment at all.

Step by step, the researchers headed into a moral swamp. At first the plan was to visit Alabama for a brief look at a population with secondary syphilis. Later, doubts about the data led officials to return to Macon County. They set up a control group of uninfected men for comparison, and decided to "bring the material to autopsy" (wait for the men to die).

This meant keeping the subjects away from medicine that worked. So as word of penicillin's effectiveness spread in the 1940s, the men with syphilis had to be sealed off from the news. Newly infected men were switched into the group of study participants, while no effort was made to protect them or their families. The project glided from research to deadly manipulation to cover-up.

Today strict controls are in place to prevent such off-the-rails immoral research, but the issues raised by Tuskegee are still with us. Is it moral, for instance, for current researchers to use the results of the Tuskegee study? Citing the results not only seems repugnant; it can be viewed as a posthumous reward to those who produced the evil in the first place.

But Arthur Caplan, director of the Center for Biomedical Ethics at the University of Minnesota, writes: "Too much of what is known about the natural history of syphilis is based upon the study, and that knowledge has become so deeply embedded that it could not be removed." Caplan urges that every time the research is cited, the ethical shadow over it should also be cited.

But that will not deal with the pain many black Americans continue to feel about Tuskegee. The conspiracy theory about AIDS - that it was deliberately introduced by whites to kill off blacks - is emotionally rooted in what happened in Macon County.

In his book on Tuskegee, "Bad Blood," James Jones argues that "hidden within the anger and anguish over Tuskegee is a plea for governmental authorities and medical officials to hear the fears of people whose faith has been damaged . . . and to acknowledge the link between public health and community trust."

Tuskegee will be behind us only when that trust is restored.

John Leo is a contributing editor to U.S. News and World Report. His column appears Tuesday on editorial pages of The Times.

(Copyright, 1993, John Leo)