There is no doubt that research has the potential to be exploitative – the researchers generally have a lot more to gain than any single research participant. But does that make it a ‘crime’? Well, lets look at the Tuskegee syphilis experiment that took place between 1932 and 1972. This study was undertaken by the US public health service to investigate the natural progression of untreated syphilis. The study involved 600 African-American particpants who enrolled under the auspices of receiving free meals, health care and a free burial service.
Yet the study was not what it had seemed to these participants – in fact, when the they were examined they were not told whether or not they actually had syphilis. Whilst 399 of the participants did have syphilis when the study began, they were in fact told they were being treated for ‘bad blood’ – a local term for illnesses including syphilis, anaemia and fatigue.
Nevertheless the study was conducted during the years of the Great Depression and funding was soon cut off. But indeed, the study was not terminated; instead it continued without informing the men that they were not going to receive treatment. Even by 1947 when penicillin had been proven as first line syphilis treatment, scientists prevented the participants from accessing the drug, even stopping them enrolling on treatment programs elsewhere.
The controversy of this case was only exposed in 1972 by a whistleblower, after numerous of the men in the study had died of syphilis. This case thus led to changes in US law and regulation on protection of participants in clinical studies. While the Tuskegee case is not unique, it has been described as the ‘longest non-therapeutic experiment on human beings in medical history’. But what it serves to demonstrate is that shortcomings in research protection are so pronounced in global health trials.
Whilst today many more laws and protective measures are in place, most of these measures rely on the cooperation of those conducting the research and we must not be ignorant to the potential for exploitative research to occur; instead we must draw on what we have learnt through past scenarios to ensure that such human rights violations do not occur under the guise of research in the future.