Tuskegee Syphilis Study: Medical Ethics and Disclosure

Introduction

Each day, medical providers and researchers make decisions about what information is necessary to disclose to patients and under what circumstances disclosures should be made. In the clinical setting, the negative implications of a poorly considered disclosure decision can involve relatively simple problems, such as a patient being unaware that a medication may cause nausea. However, some disclosure decisions carry more serious consequences — for example, a patient undergoing intensive treatment without sufficient knowledge of their poor prognosis (Carroll, 2001). In the research setting, the result of nondisclosure can range from a subject not fully understanding the time commitment of trial participation to more extreme consequences, such as a subject participating in research without being aware of life-threatening risks (Jones, 1993).

This essay is an opinion paper about the disclosure of critical information to patients and the ethical implications regarding patient consent, benefit, and management. The author analyzes the well-known Tuskegee Syphilis Study in this context.

Disclosure as an Obligation in Medicine

During the 1960s, a dramatic shift toward patient rights began to surface. One area identified as needing reform involved providing honest disclosure to patients about their medical diagnosis and treatment options. Patients began to challenge the medical community — both in courts of law and in the court of public opinion — about whether the provider was actually in the best position to make treatment decisions on behalf of their patients. Many health care professionals argued that disclosure of a poor diagnosis would be harmful to the patient's physical and psychological well-being.

The transition from a culture of nondisclosure toward one that relies heavily upon informed consent can be traced back to several landmark legal cases. The precedent for voluntary consent originated as early as 1914, when the case of Schloendorff v. New York Hospital used the language of self-determination to justify imposing an obligation to obtain patient consent (Berg, 2001). In his opinion, Justice Benjamin Cardoza wrote: "Every human being of adult years and sound mind has a right to determine what shall be done with his own body."

In doing so, this case marked an important step toward the eventual inclusion of disclosure as a requirement for a patient to voluntarily consent to treatment. At that time the term "informed consent" had not yet been used, but the court indicated that some basic form of consent should be obtained from the patient before treatment is rendered.

The Tuskegee Syphilis Case

In 1972, the New York Times reported on a research study being conducted in Tuskegee, Alabama, in which subjects diagnosed with syphilis were left untreated so that researchers could document the natural effects of syphilis on the human body. Between 1932 and 1972, the study enrolled four hundred subjects who had been diagnosed with syphilis and two hundred subjects who served as a control group. Those diagnosed with syphilis were never told of their diagnosis; instead, they were promised transportation, hot lunches, free medical care (excluding treatment for syphilis), and free burial following autopsies. The subjects — predominantly poor and uneducated African Americans — were never informed of their condition and were never offered treatment, even after it was discovered in the 1940s that penicillin could effectively treat syphilis (White, 2003). In fact, the subjects were not even told they were participating in a research study; they were told only that they had "bad blood" and required occasional medical examinations (Reverby, 2000).

Conclusion

Despite the ethical and legal support for disclosure, the current environment of medical care and research shows a continued lack of motivation by providers to supply the level of disclosure that patients desire. In one 1989 sample of internists in the United States, a study found that most physicians, when responding to a hypothetical case, would engage in deception or "misrepresent" facts if doing so would benefit the patient or circumvent what they considered an ill-advised regulation.

Disclosure decisions carry important consequences not only for patients and research subjects, but also for health care providers and researchers themselves. These professionals may be inconvenienced by having to disclose a conflict of interest that results in lost income or slowed research (Miller & Sage, 1999). However, they may face even worse consequences — such as the destruction of their medical reputation or research career — if it is found that they failed to disclose critical information to their patients and subjects (Morreim, 2001).