Find information from your text and/or from other reputable sources. Provide a brief, yet thorough overview of the experiment and the ethical problems involved in the scenario. Cite your sources.
Discuss which of the three major principles from the Belmont Report (1. Respect for Persons, 2. Benficience, 3. Justice) are violated in the situation you chose. Discuss all that are applicable. This requires that you not only identify the principle but explain how/why it was violated.
Discuss how the requirement of Informed Consent is essential to preventing the ethical issues you have identified and how it’s requirement in your chosen situation would now protect a participant.
Sample Answer
The Tuskegee Syphilis Study: A Case Study in Ethical Failure
The Tuskegee Syphilis Study, conducted by the U.S. Public Health Service (USPHS) between 1932 and 1972, stands as a stark example of ethical violations in research. The study involved 600 African American men, 399 of whom had syphilis, and 201 who did not. The men were recruited with misleading information and were not adequately informed about the study’s purpose or the risks involved. Initially, the study aimed to observe the natural progression of untreated syphilis. However, even after penicillin became a standard treatment for syphilis in the 1940s, the men were not offered the treatment. Instead, they were actively prevented from receiving it, under the guise of “special free treatment” for their “bad blood.” Researchers used deceptive tactics to prevent the men from seeking outside medical care, which would have likely led to their syphilis being treated. Many of the men suffered severe health consequences, including neurological damage, blindness, heart disease, and death. The study continued for 40 years, long after effective treatment became available. (Brandt, 1978).
Full Answer Section
Ethical Principles Violated:
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Respect for Persons: This principle emphasizes the autonomy of individuals and their right to make informed decisions about their own lives. The Tuskegee Study egregiously violated this principle. The men were deceived about the study’s true nature and were not given the opportunity to choose whether or not to participate. They were not informed of their diagnosis or the availability of treatment, denying them the ability to make informed choices about their health. The researchers actively misled the participants, betraying their trust and undermining their autonomy.
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Beneficence: This principle requires researchers to maximize benefits and minimize harms to participants. The Tuskegee Study clearly failed this test. The researchers not only failed to provide treatment that would have benefited the men, but they also actively harmed them by withholding it. The study caused significant physical and psychological harm to the participants, their families, and the broader African American community. The long-term health consequences of untreated syphilis were well-documented by the 1940s, yet the researchers chose to continue observing the disease’s devastating effects rather than offer treatment, thus prioritizing research goals over the well-being of the participants.
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Justice: This principle demands that the benefits and burdens of research be distributed fairly. The Tuskegee Study disproportionately targeted a vulnerable and marginalized group â African American men â for research that offered them no potential benefit. While the study aimed to understand the natural history of syphilis, this knowledge was not intended to directly benefit the participants. Instead, the research focused on observing the disease’s progression in a population already facing significant health disparities. This represents a clear injustice in the selection of research participants and the distribution of research burdens.
The Role of Informed Consent:
Informed consent is absolutely essential to preventing the types of ethical violations that occurred in the Tuskegee Study. Informed consent means that participants must be fully informed about the following:
- The purpose of the research
- The procedures involved
- The risks and benefits of participation
- Their right to withdraw from the study at any time
In the Tuskegee study, the men were not adequately informed. They were deceived about the nature of the study and were not told about the availability of treatment. Had they been given complete and accurate information, they would have likely made different choices about participating.
How Informed Consent Would Have Protected the Participants:
If the men in the Tuskegee Study had been properly informed and given the opportunity to provide informed consent, they would have been protected in the following ways:
- Choice: They would have been able to choose whether or not they wanted to participate in the study, knowing the true purpose and the risks involved.
- Treatment: They would have been informed about the availability of penicillin and would have been able to seek treatment for their syphilis.
- Autonomy: Their autonomy would have been respected, and they would have been able to make their own decisions about their health, rather than being treated as mere objects of study.
The Tuskegee Syphilis Study serves as a crucial reminder of the importance of ethical principles and the necessity of informed consent in research. It highlights the devastating consequences that can occur when research prioritizes scientific knowledge over the well-being and autonomy of human subjects.
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