Shaping the future of ethics and regulations in research

One of the historical experiments that was instrumental in shaping the future of ethics and regulations in research is the famously known Tuskegee experiment which was conducted without the participants giving their informed consent to participate in the study and the researchers did not inform the participants the risks and benefits of participation and the reason behind conducting the research. The Tuskegee Institute together with the Public Health Service started the study in 1932 with the aim of finding out the history of syphilis among the black men hoping that they would start treatment programs. 600 men participated in the study. 399 of the men had syphilis while 201 men did not have syphilis. The researchers were lying to the men that they were treating them for having bad blood which was a term that was used to refer to long term illnesses associated with fatigue, anemia and syphilis. This study was supposed to run for 6 months but it continued up to 40 years (Center for Disease Control, 2017).

The participants were compensated with free medical examinations, meals and burial insurance. What went wrong with the study was discovered 40 years later after a press story lead to public outcry and a review of the study was done by a panel of 9 members. The panel found out that there was no evidence to show that the men had been informed about the study and its main purpose and no facts were provided to them at all. They agreed to be examined and treated freely. Still, in 1947, after penicillin was found to be a cure for syphilis, the men were never treated using penicillin neither were they given the chance to quit from participating in the study. The study ended in 1972 and in 1973 a lawsuit was filed on behalf of the involved participants and the government promised that it would give lifetime medical benefits to all those who survived, their wives and offspring’s and they would also offer burial services to them. On 16th May 1997, the Presidential apology was given by President Clinton on behalf of the nation and in 2001 the Presidential Council on Bioethics was established. The last person to receive these benefits was a widow who died on 27th January 2009 (“Tuskegee Syphilis Study and Its Implications for the 21st Century,” 2015).

Gallagher (2014) suggests that to make the study ethical and valid, the participants were supposed to be informed about the objective behind their required participation in the study and in case they never wanted to participate, they should not be coerced into the study. Secondly, the participants were supposed to be treated using penicillin which was discovered to cure syphilis in 1947 and this would have reduced the deaths. More so, there were no records on the number of deaths that resulted from the study. The researchers were supposed to have followed up on the participants and keep records whether they died from syphilis. In a nutshell, the study violated the rights of the participants by keeping them on the dark on what was happening.

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