Every medical student in the United States is taught about the notorious Tuskegee Syphilis Experiment in which hundreds of poor blacks living in Tuskegee Alabama, between 1932 and 1972 were, without their knowledge, enrolled in a study looking at the effects of untreated syphilis. Blacks with syphilis were not given antibiotics and the natural course of their disease was followed, while they received token physical examinations. The study made absolutely no sense, and was highly unethical, because penicillin effectively treats syphilis and is still used today to prevent chronic syphilis infection which can be fatal. Worse, the poor black farmers in the study weren’t even told that they had syphilis.
Recently it was reported in the news that United States government researchers working in Guatemala in the years from 1946 to 1948 used a number of methods, including prostitutes and inoculation, to purposely infected prisoners and people with mental disabilities with syphilis. The scientific purpose was to study the effects of antibiotics on the prevention of the transmission of syphilis. Though the study participants were offered treatment, there was apparently no follow-up to see if all of them have been cured of this disease which they never should have been intentionally given in the first place. The final stage of syphilis, called, “tertiary syphilis”, is fatal in 20% of patients who are untreated, and can cause neurological and mental impairment and heart disease.
When the Tuskegee experiment came to light it lead to generations of black people distrusting public health measures, the government, and fears that the HIV was intentionally engineered to harm black people. The effects of the Guatemalan experiment-which had to be made public-will likely engender some level of mistrust of Americans working and volunteering in the country. This is sad because there is a lot of good that public health measures funded by rich countries such as the United States can do in Guatemala.
However, since these experiments happened decades ago, surely nothing similar would ever be done in the name of science again?
As the HIV/AIDS pandemic continues to heavily affect areas of high prevalence, such as sub-saharan Africa, researchers are using some of the same selling points that the Tuskegee researchers used to get participants. For example, poor black farmers in the South in the 1940s had little hopes of obtaining medical care, yet this is what the Tuskegee experiment offered: free medical exams, free meals and free burial insurance. The realization among these poor black farmers that some health care was better than none at all is the same “hook” that HIV researchers use in Africa to justify vaccine and medication trials.
After all, in some African countries there may be very limited health care services so that the limited care that researchers provide is “better than nothing.” In some cases in HIV trials in Africa a known effective treatment has not been offered to patients due to a feeling that these patients never would have received the medication in the first place, or that the scientific knowledge gained outweighed the harm done.
One recent trial, (the SAPIT trial) looked at the optimal timing of HIV treatment for patients co-infected with TB (tuberculosis) and HIV. Patients in one cohort had their TB treated first, and their HIV infection was allowed to smolder well past the point when HIV medications would normally be started. In fact, patients with CD4 counts less than 200, one of the criteria for AIDS, waited as long as 11 months before beginning HIV treatment.