The Other Tuskegee Tragedy

Not long ago, the 75th anniversary of the Tuskegee Syphilis Study was commemorated. The story is more and more familiar to scientific researchers, who are now required to undergo ethics training whenever human participants are involved in an NIH-funded project. To sum it up, this nightmare out of the darkest medical mystery-cum-X-Files conspiracy consisted in conduct syphilis experiments on six hundred black men for over forty years—from 1932 to 1972—without their consent.

The patients were deprived of treatment, not offered access to penicillin when it started being used with the general population in the late 40’s, and were lied to about their diagnoses. The “study” took advantage of the underprivileged background of the participants by offering as “compensation” free medical exams, meals, and burials. To a Jew, this is eerily reminiscent of some of the so-called “experiments” that took place in the Nazi death camps: a difference being that pain and suffering were inflicted on the Tuskegee subjects by default rather than through more “pro-active” measures.

To the greater shame of the medical community, it took an exceedingly long time to realize how unethical the Tuskegee Study was: none of the reports was confidential, and in was not until 1972 that articles appeared in newspapers condemning the study. An official apology from the US government (the CDC had supported the study as late as 1969) had to wait until 1997.

How could it be worse? Through an article in this month’s issue of the American Journal of Public Health, I learned that the syphilis study wasn’t the only shameful story somehow connected to the name of Tuskegee. In “Race and the Politics of Polio,” Yale medical historian Naomi Rogers tells the story of the discrimination against blacks during the fight against Poliomyelitis.

In the 1920s, Roosevelt had bought a place called Warm Springs, which he converted into a polio rehab center. But the center accepted only white patients, and used only whites for the medical and administrative staff while employing blacks in menial jobs. In 1936, a controversy bubbled to the surface at Warm Springs, as it appeared that while black organizations had contributed financially to its upkeep, yet there was still no access to care for black patients.

The arguments opposing integration rested for a good part on faulty statistical data (and faulty interpretation) regarding the distribution of the polio epidemic: whites were supposedly much more susceptible to the disease than blacks.

In 1937, the black support for Roosevelt had not been vindicated at Warm Springs. Faced with mounting criticism and pressure, Roosevelt finally gave his public support to a treatment center at Tuskegee, which opened in 1941. This was still some sort of decoy, and black polio patients were only admitted to Warm Springs at the end of 1945. The Tuskegee polio center had contributed to the progressive acknowledgment by the medical community of the indiscriminate nature of the disease. However, as late as 1954, black children still were still waiting outside white public schools to receive their polio vaccine shots.

Rogers notes how, as compared to the syphilis study case, discrimination with respect to polio treatment was “a more palatable issue for civil rights activism.” Syphilis, a sexually transmitted disease, evoked much stronger “racist connotations” than polio, which furthermore hit mostly children.

What should we learn from two shames of Tuskegee? Much is made of the syphilis study in manuals of medical “cultural competency:” it is said that the memory of it in the black community leads to a persistent distrust of health care institutions. Obviously, the discrimination in the treatment of polio should also be counted. How is it possible to “repair” the damage so that blacks in the U.S. do not have to undergo such undue hardships again?

Disparity in health care is still, unfortunately, prevalent. As a counterpart to Joey’s call for financial generosity, I would like to encourage as many of you as possible to volunteer in health care or social services for under-served populations. Although there has been an increase in the number of health care volunteers in the U.S. lately, the system has also been increasingly dependent on the generosity of people giving their time in order to provide free care for the impoverished. This means that we need more volunteers to sustain the effort, and particularly more highly trained volunteers, preferably professionals in their fields.

It is only through giving back to the community that we will be able to erase the scars of the past.