Introduction
The Tuskegee Study of Syphilis in the Negro Male carried out in 1932-72, is a medical study to record the natural history of syphilis cases amongst the Blacks in Tuskegee. When the research began, there was no proven medicine to treat and cure the disease. A total of 600 men participated in the study, where 399 of them had already contracted syphilis and were used for experimental purposes, while the remaining served as control subjects (Tuskegee University, n.d.). The black men who participated in the research were unfairly exploited through enticements since they were poor and illiterate sharecroppers.
The researchers did not disclose information to participants regarding the disease. Instead, they deceived them that they would get treated for “bad blood,” a local phrase commonly used to describe several diseases, including syphilis, fatigue, and anemia. The researchers promised study participants free medical examinations and treatment for minor infections, transport to and from clinics, and food on examination days. In addition, they would cater for burial expenses and give stipends to surviving family members. Due to their vulnerability and illiteracy, they accepted to be part of the study since the promised benefits were a dream and they could not critically consider them. (Tuskegee University, n.d.). Shockingly, no promises got fulfilled; the study became a misery rather than beneficial.
Jean Heller, an Associated Press journalist, broke the news to the world on July 25, 1972, that the 40-year “study” had left dozens of black families infected and others dead. The revelation triggered an international public outcry and compelled the government to initiate a series of interventions to mitigate the menace of the disease on the Blacks (Tuskegee University, n.d.). An Ad Hoc Panel comprising professionals from various fields, including medicine, law, religion, and education, was established to review the alleged study.
The panel concluded the review and found out that there were several ethical violations in the study. Despite the men agreeing to examination and treatment, human scientific protocols that ensure their safety and well-being were ignored or violated. The researchers never told them about the “Tuskegee Study of Untreated Syphilis in the Negro Male”, which was the actual name and purpose of the study, as well as the consequence of the treatment or failure to get treatment during this study. The men never knew the impacts of the treatment on their partners and children conceived after participating in the research. The panel also found that after penicillin got approved as a treatment and cure for syphilis, the participating men had no option of ceasing as part of the study (Tuskegee University, n.d.). However, they got a reprieve when Attorney Fred Gray represented them in a lawsuit that saw them get over $9 million in compensation.
The Willowbrook Hepatitis Studies (1963-1966)
The Willowbrook Hepatitis Studies of 1963 is a study in history conducted in Willowbrook on hepatitis of hepatitis. It was purposed to reveal the natural history, prevention, and possibly vaccine or cure for the disease. The medical team, led by Dr. Saul Krugman, conducted a risky and controversial trial on hepatitis in mentally challenged children. They decided to expose a few of the newly admitted children in the facility to the Willowbrook strain of hepatitis. They made the decision informed on the observations and findings from the previous cases where most newly admitted children would get infected. The previous findings showed that the cases of infection in children between 3-10 years were mild, with no deaths. In addition, research has shown that exposed children are likely to develop immunity against the strain of hepatitis; thus, artificially introducing infection becomes prophylactic. The exposed children were safely isolated from the risk of exposure to other infectious diseases within the facility (Rosenbaum, 2020). These actions had to with the parents’ consent of these children, who had to be adequately counseled by a psychiatric social worker.
Initially, the counseling was offered to individual parents but would later change to groups, allowing them to have a vigorous discussion and raise concerns about their children. After these sessions, the parents would be allowed to think about it and make informed decisions and follow up be conducted after a fortnight to confirm what the parents had opted for (Rosenbaum, 2020). If they agreed, they would sign the consent and be free to withdraw at any time and have their children discharged from isolation and trials.
Dr. Krugman, a vocal and lead researcher in the facility, made very controversial decisions in the study that raised medical concerns. He indirectly coerced parents to let their children be part of the research and be kept in new and neat research rooms with adequate staff. Some parents claim that Dr. Krugman assured them their children would be safe and get the vaccine in the research wards. He took the risk of infecting mentally challenged children with a potentially deadly infection, which he felt comfortable taking a trial. The experiments would also involve exposing a recovered patient to check whether reinfection would occur (Rosenbaum, 2020). Despite the success of his effort to tame hepatitis in Willowbrook, the risky and controversial actions to achieve this received praise and criticism in equal measures.
How to Avoid Ethical Violations in a Research
Informed consent is one of the paramount issues to consider to avoid ethical violations. Individuals or groups participating in any study should be respected and allowed to make decisions without coercion. They should be allowed to take part in the research by volition. People with compromised ability to make decisions, such as children and the mentally challenged, must be respected and protected. Information regarding participants and the details of their input in a study should be private and confidential; it should be shared or accessed by an unauthorized third party (Tajir, 2018). Some information, such as medical conditions or reports, should be treated with the utmost confidentiality.
Conclusion
When conducting research, beneficence should be part of the ethical consideration. It ensures maximum benefits of information from the study participants while minimizing the harm that might occur. During a study, safety from physical, psychological, or spiritual is guaranteed at all times, thus giving participants ample environment to provide all the relevant information the researcher needs. Anyone volunteering to give information on a given subject matter should unconditionally be given an opportunity without discrimination and their input respected. In addition, research carried out in emergencies should focus more on how to save the situation instead of creating a sensational report (Tajir, 2018). Such studies will be of great help when similar or closely related occurrences happen on a future date.
References
Rosenbaum, L. (2020). The Hideous Truths of Testing Vaccines On Humans. Forbes. Web.
Tajir, G. K. A. (2018). Ethical Treatment of Participants In Public Health Research. Journal of Public Health and Emergency. Web.
Tuskegee University. (n.d.). About the USPHS Syphilis Study. Tuskegee University. Web.