Formalised research ethics have not always been with us. At one time it was felt that ethical considerations could be left to experts and religions, without the need for regulation and legislation. Over the last hundred years this trust has all too often been shown to be misplaced, and high profile cases have shaped the research landscape we have today. This TARSK (things all researchers should know) covers one well known example.
The Tuskegee Syphilis Experiment ran from 1932 to 1972 in Tuskagee, Alabama, USA. The research started by recruiting 339 poor African-American men who had syphilis in 1932 (at a time when there was not any effective treatment) and followed their progress over the next forty years to see how the disease developed if left untreated.
At the time the project started, in 1932, there is reason to believe that its aims were positive. For example, it seems the experiment was intended to highlight the need for treatment programmes.
However, the shortcomings were numerous and appalling:
1. The 339 men recruited were not told they had syphilis and consequently went on to infect many of their wives, which resulted in 19 of their children being born with congenital syphilis.
2. By 1947 penicillin had become the standard and effective treatment for syphilis, however many of the men were not treated, nor told of their disease and the options to end it.
3. Some of the men who were aware of penicillin were given placebos to enable their progress to be recorded.
4. After the Second World War, and the medical abuses associated with the Holocaust, the Nuremberg Code was adopted to protect research subjects, but nobody involved with this experiment or overseeing it (for example the CDC) seems to have made the connection that these new rules covered them.
Although the experiment was never ‘secret’, for example, plenty of papers were published, the public in general were not aware of it. The story was eventually leaked to the press by Peter Buxton, who had spent several years trying to get the programme closed down through the official channels (for example, in 1966 the Government’s CDC confirmed the need to continue the study until all the men were dead and had been autopsied). The story was carried by the Washington Start in July 1972 and the experiment was closed the same year.
In 1976 the historian James Jones interviewed John Heller, who had been the Director of the Venereal Disease unit of the PHS from 1943 to 1948, amongst Heller’s remarks were “The men's status did not warrant ethical debate. They were subjects, not patients; clinical material, not sick people.”
In 1974 the US Government passed the National Research Act and the creation of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research helping ensure that such things could not happen in the future.
Research conducted in 1990 by Southern Christian Leadership Conference among African American churchgoers found that 34% thought AIDS was an artificial virus, 35% thought it a form of genocide, and 44% thought the Government were not telling the truth about AIDS. Many commentators have linked these beliefs to the loss of confidence created by the Tuskegee experiment.