The Tuskegee Study was a research conducted on untreated syphilis in African-American participants between 1932 and 1972 (Gray, 2013). The U.S. Public Health Service conducted it with the assistance of Tuskegee University, which was a black collect in the history of Alabama. The study intended to evaluate the dynamics around untreated syphilis. The researchers selected a total of 600 participants who were impoverished and of African-American descent. Among the 600 male participants, 399 had contracted syphilis prior to the study while the others had not had experience with the disease. Furthermore, the men were promised to receive free medical care and burial insurance, and meals by the United States government for participating in the study. In addition, they were informed that the study was supposed to last for 6 months. However, the study ended after 40 years (Gray, 2013). In the process of conducting the study, funding for the participants’ treatment was cut off with the study continuing without even informing the participants that there were no chances of treating them.
Furthermore, the investigators in the study did not inform the men who had the disease that they had it. Subsequently, none of the participants with the disease was treated. Such happened even following penicillin being proven to successfully cure the disease. During the study, the investigators told the participants that they were treating them for “bad blood,” which at the time was an expression meaning a mix of various conditions in the black community (Gray, 2013). In 1972 when the study ended, only 74 participants were alive. Of the 399 participants who had contracted syphilis in the past, 28 had died of it, 100 succumbed to related complications, while 40 of their partners had contracted the disease (Gray, 2013). In addition, 19 children from this group had been born with the disease. Based on this view, the study led to a wide variety of adverse impacts on the participants on top of being conducted amid practices that attract a wide variety of ethical questions.
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Ethical Issues
Acknowledging the presence of ethical concerns in the Tuskegee Study is critical to ensure that better research decisions are made in future research studies. As such, the Tuskegee Study, together with other research studies in the medical and psychological fields, have helped in shaping the ethical practices that are expected from all practitioners in today’s health industry, especially in relation to the conduction of research. There are a variety of ethical topics that are covered by the Tuskegee Study.
Informed Consent
The American Psychological Association (APA) outlines standards that contain what is expected of health care providers in their processes of the assessment, treatment, or research of their patients (Knapp & VandeCreek, 2012). According to the ethics code of the APA, informed consent requires that researchers should inform the subjects of their studies about the purpose of their research, the expected procedures and duration, and any potential risks to enable the participants make well-informed decisions about their involvement in the research (Knapp & VandeCreek, 2012).
Although at the time of the conduction of the Tuskegee Study the standards of the APA were not comprehensive, the ethics topic of informed consent is important. On the one hand, the participants in this study were uneducated and impoverished African-Americans, which leads to the ethical concern that they were not capable of making informed decisions. The decision to participate in this study, however, is influenced more by the attractive incentives given to the participants, including free meals and medical cover that were things that were rare for this group of participants. In addition, the researchers told the participants that their purpose was to give them free treatment for “bad blood” in order to recruit them into the study. The failure to provide information on the purpose of the study, the treatment options, and its nature depicts the insufficiency of informed consent lead to harm to the participants and other related parties.
Beneficence and Non-maleficence
Beneficence entails balancing the benefits of any treatment administered against any related costs and risks. On the other hand, non-maleficence involves avoiding inflicting harm (Timko, 2001). Given that treatments administered during studies have a risk of some form of harm occurring, these principles imply that the benefits should overdo the harm and that health care providers should minimize and avoid harm (Timko, 2001). Researchers engaged in conducting the Tuskegee Study harmed the participants. In addition, they harmed their wives and children. They also led to harm of family and close relatives of the participants who provided them with care as the treatment was not provided and thus, their condition grew worse. The ethical principles of beneficence and non-maleficence were violated in this study, as the researchers did not equip the participants with knowledge on the transmission of syphilis and thus, any measures that could be applied to prevent others, which in turn resulted in harm to such other parties including the wives of some of the participants.
Fidelity and Responsibility
The ethics topic of fidelity and responsibility was also covered in the Tuskegee study (Pope & Vasquez, 2007). These principles emphasize on building and maintenance of trust in the relationship between health care providers and their patients and the ultimate obligation of health practitioners to serve to achieve the best care for the patients. Similarly, health study researchers should establish trustful relationships with the participants in their study while accepting full responsibility for their actions. The Tuskegee Study violated these ethics requirements, especially by relying on deception to give a reflection of trusting associations between the participants in the study and the researchers. They hired African-American nurses to close the cultural gap in the relations between the participants and the researchers. Such staff in the study could also provide close support and care to the participants. Subsequently, the trusting image created through these efforts could have prevented the participants in the study from making informed decisions. Furthermore, the incentives given to the participants in the form of free treatment and meals were deceptive means of creating a better relationship between the participants and the researchers, thus, violating the fidelity and accountability principles.
Human Rights and Dignity
The ethical principle of the upholding human rights and dignity entail the protection and respect for the rights and dignity of the patients. Respect for human dignity in clinical and medical research entails respecting the self-worth of an individual (Feuillet-Liger & Orfali, 2018). The Tuskegee Study violated human rights and took advantage of the vulnerability of the participants who were impoverished and had contracted a possibly fatal disease. They used a highly vulnerable population in the study without respect to their human rights. Subsequently, the study led to further harm to vulnerable group depicting the researchers disregard for human rights and dignity.
Integrity and Justice
The ethics aspects of integrity and justice focus on being honest. In the clinical and medical fields, health care providers and researchers should uphold honesty, while ensuring that patients and participants in research studies are not presented with false and deceiving information (Israel, 2014). Besides, the researchers in the Tuskegee study were dishonest from the onset when they informed the participants that they are treating them “bad blood” while they knew that they wanted to research on syphilis. They also violated these ethical principles by not providing the promised treatment and extending the duration of the study.
References
Feuillet-Liger, B., & Orfali, K. (2018). The Reality of Human Dignity in Law and Bioethics: Comparative Perspectives . Springer.
Gray, F. (2013). The Tuskegee Syphilis Study: The Real Story and Beyond . NewSouth Books.
Israel, M. (2014). Research Ethics and Integrity for Social Scientists: Beyond Regulatory Compliance. SAGE.
Knapp, S. & VandeCreek, l. (2012). Practical Ethics for Psychologists: A Positive Approach . American Psychological Association.
Pope, K. & Vasquez, M. (2007). Ethics in Psychotherapy and Counseling: A Practical Guide . John Wiley & Sons.
Timko, R. (2001). Clinical Ethics: Due Care and the Principle of Nonmaleficence . University Press of America.
