Answer

Medical Mistrust or Discrimination

In 1932, the U.S. Public Health Service, working in collaboration with the Tuskegee Institute, commenced a study to document syphilis natural history so as to justify treatment programs for the African Americans. In the study, 600 African American males were recruited into the study; 399 had syphilis and 201 did not have the disease (Centers for Disease Control and Prevention (CDC), 2020). The majority of these participants were illiterate and were just observed for the natural history of syphilis until their eventual deaths as a result of the disease (Vives & Carmona, 2016). There was no informed consent and informants were told that they were being treated for “bad blood”. “Bad blood” could imply having several ailments such as anemia, syphilis, and fatigue. The only benefits that research participants received included free meals, free medical exams, and burial insurance. The study was planned to last for 6 months, but it went on for 40 years (CDC, 2020). 

            In 1972, a story published by the Associated Press on the Tuskegee triggered a public outcry.  Public reaction made the Assistant Secretary for Health and Scientific Affairs to put in place an Ad Hoc Advisory Panel to review the study. The Panel established that participants had agreed to participate freely in the study; however, there were not informed about the purpose of the study.  It is unfortunate that the participants did not receive adequate treatment even if penicillin became the drug of choice for management of syphilis in 1947.  Besides, participants were not given a choice of leaving the study at free will.  The panel concluded that the study was ethically unjustified and on Oct 1972, the panel advised the Assistant Secretary for Health and Scientific Affairs to stop the study immediately. A month later, the secretary announced the end of the Tuskegee Study (CDC, 2020). The Tuskegee Syphilis study is described by Paul and Brookes (2015) as an egregious case of deliberate racism. The participants were just being followed but not being treated as they had been promised (Paul & Brookes, 2015). In my opinion, I do agree with the Panel that the study was unethical since the subjects were not informed that they were being studied for the natural history of syphilis; hence, they could have not be treated appropriately. I think that the researchers used some of the benefits mentioned above to lure subjects into the study without knowing risks involved in the study.

             In 1973, a class-action lawsuit was filed on behalf of the victims and their families. In 1974, an out-of-court settlement amounting $10 million was reached. The U.S. government offered to provide lifetime medical benefits and burial services for the surviving participants. The Tuskegee Health Benefit Program was formed and tasked with provision of the above medical benefits. In 1975, the offspring, widows of the participants were included in the program. The program was put under the control of the CDC and it is still in place to-date in the National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention. The last participant in the study died in January 2004 while the last widow who was receiving medical benefits under the program died in Jan 2009. There remain 11 offspring who continue to receive medical and health benefits under the study (CDC, 2020).

            Tuskegee Study made the government to change research ethics for good. The National Research Act was signed in 1974 into law leading to creation of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Commission has created basic research principles that guide researchers and research practice to date. It is also mandatory to get voluntary informed consent from potential research participants before they are recruited into the study (CDC, 2020). Ethical guidelines and principles as well as laws and regulations are necessary so as to prevent occurrence of similar studies in the future.