Medical EthicsThe Tuskegee Syphilis Experiment

Katherine McLoone, Ph.D.

Department of Comparative World Literature and Classics

California State University Long Beach

Ethics and the BodyIntroduction

Medical Ethics

In this section we will examine the difficult intersections of ethics, empathy, and the demands of the healthcare systems on participants. Our readings on The Tuskegee Experiment will examine its historical and social context, as well as corresponding situations in American public health (i.e., the 1950s “Bowery Study”), in order to develop an understanding of the ethics of medicine, public health, and patient rights.

Questions to Think About

• What is the relationship between language and truth?

• How does literature both reveal and conceal “truth”?

• Which gives us a greater understanding of a topic: fiction or non-fiction?

• Which gives us a greater understanding of ourselves: fiction or non-fiction?

Questions to Think About

• How is power conceptualized in medical relationships?

• How do individuals relate to power structures?

• How might we deal with being “diagnosed” or “labeled”—and can we reject, alter, or amend those diagnoses or labels?

• How does privilege—social, economic, racial, gender, ableist—complicate notions of rights and responsibilities of patients?

Tuskegee Syphilis

ExperimentPart I: The Context of the Experiment

Tuskegee, Alabama

• 399 poor African-American men with syphilis studied from 1932-1972 (control group: 201 men without)

• Post-1940s, penicillin introduced

• Men not given penicillin

• Post-1947, Nuremburg Code

• Experiment did not adhere to Nuremburg Code

• 1997: The US apologized.

Tuskegee Research Abuse

• Study deceived patients into the reason for the inquiry, or even that an inquiry was occurring—it was billed as “free treatment” for “bad blood.”

• It exploited known social vulnerability.

• It willfully attempted to deny subjects access to appropriate medical care

Tuskegee Research Benefits

• Study was not racist in the beginning

• Patients did receive some monetary benefit

Questions

• Do the benefits outweigh the abuses in this trial? Why or why not?

• How does Feldshuh portray the benefits and abuses of this trial in Miss Evers’ Boys? Do they change over the course of the play?

• What is the significance of the “certificate” in Miss Evers’ Boys?

1950s Bowery Study

• Population: 1200 Skid Row residents with and without prostate cancer

• Procedure: cutting out part of the prostate for biopsy

• Treatment: surgical removal of prostate, surgical and chemical castration, estrogen

• Results: rectal lacerations, impotence, diminished sexual function

1946-48

• US government infected patients in a mental institution with syphilis and gonorrhea, sometimes withholding treatment.

Tuskegee Syphilis

ExperimentPart II: Responses to Patient/Subject

Abuse

1997 Apology by Pres. Clinton

• “What was done cannot be undone. But we can end the silence. We can stop turning our heads away. We can look at you in the eye and finally say on behalf of the American people, what the United States government did was shameful, and I am sorry ... To our African American citizens, I am sorry that your federal government orchestrated a study so clearly racist.”

Nuremberg Code

Post-WWII medical code of ethics meant to avoid evil Nazi-like actions in the future.

•Closely read the selections from the Nuremberg Code on the following slides. How does the Tuskegee Syphilis Experiment fit into this code? Does it violate the code?

Nuremburg Code 1. The voluntary consent of the human subject is

absolutely essential. This means that the person involved should have legal capacity to give consent; should be so situated as to be able to exercise free power of choice, without the intervention of any element of force, fraud, deceit, duress, over-reaching, or other ulterior form of constraint or coercion; and should have sufficient knowledge and comprehension of the elements of the subject matter involved as to enable him/her to make an understanding and enlightened decision. This latter element requires that before the acceptance of an affirmative decision by the experimental subject there should be made known to him the nature, duration, and purpose of the experiment; the method and means by which it is to be conducted; all inconveniences and hazards reasonable to be expected; and the effects upon his health or person which may possibly come from his participation in the experiment. The duty and responsibility for ascertaining the quality of the consent rests upon each individual who initiates, directs or engages in the experiment. It is a personal duty and responsibility which may not be delegated to another with impunity.

Nuremburg Code2. The experiment should be such as to yield fruitful results for the good of society, unprocurable by other methods or means of study, and not random and unnecessary in nature.3. The experiment should be so designed and based on the results of animal experimentation and a knowledge of the natural history of the disease or other problem under study that the anticipated results will justify the performance of the experiment.4. The experiment should be so conducted as to avoid all unnecessary physical and mental suffering and injury. 5. No experiment should be conducted where there is a prior reason to believe that death or disabling injury will occur; except, perhaps, in those experiments where the experimental physicians also serve as subjects.

Nuremburg Code6. The degree of risk to be taken should never exceed that determined by the humanitarian importance of the problem to be solved by the experiment.7. Proper preparations should be made and adequate facilities provided to protect the experimental subject against even remote possibilities of injury, disability, or death.8. The experiment should be conducted only by scientifically qualified persons. The highest degree of skill and care should be required through all stages of the experiment of those who conduct or engage in the experiment.

Nuremberg Code

9. During the course of the experiment the human subject should be at liberty to bring the experiment to an end if he has reached the physical or mental state where continuation of the experiment seems to him to be impossible.10. During the course of the experiment the scientist in charge must be prepared to terminate the experiment at any stage, if he has probable cause to believe, in the exercise of the good faith, superior skill and careful judgment required of him that a continuation of the experiment is likely to result in injury, disability, or death to the experimental subject.

Principles of Patient Rights

Principles of Patients Rights' and Responsibilities was developed and Approved by the National Health Council Board of Directors, January 1995 1 (Directors 1995)

•Closely read the selections from the Principles of Patient Rights on the following slides. How does the Tuskegee Syphilis Experiment fit into these principles? Does it violate the principles?

Principles of Patient Rights

1. ALL PATIENTS HAVE THE RIGHT TO INFORMED CONSENT IN TREATMENT DECISIONS, TIMELY ACCESS TO SPECIALTY CARE, AND CONFIDENTIALITY PROTECTIONS.

Patients should be treated courteously with dignity and respect. Before consenting to specific care choices, they should receive complete and easily understood information about their condition and treatment options. Patients should be entitled to: coverage for qualified second opinions; timely referral and access to needed specialty care and other services; confidentiality of their medical records and communications with providers; and, respect for their legal advanced directives or living wills.

Principles of Patient Rights

3. ALL PATIENTS HAVE THE RIGHT TO KNOW HOW COVERAGE PAYMENT DECISIONS ARE MADE AND HOW THEY CAN BE FAIRLY AND OPENLY APPEALED.

Patients are entitled to information about how coverage decisions are made, i.e., how "medically necessary" treatment is determined, and how quality assurance is conducted. Patients and their family caregivers should have access to an open, simple, and timely process to appeal negative coverage decisions on tests and treatments they believe to be necessary.

Principles of Patient Rights

6. ALL PATIENTS HAVE THE RIGHT TO KNOW WHAT PROVIDER INCENTIVES OR RESTRICTIONS MIGHT INFLUENCE PRACTICE PATTERNS.

Patients also have the right to know the basis for provider payments, any potential conflicts of interest that may exist, and any financial incentives and clinical rules (e.g., quality assurance procedures, treatment protocols or practice guidelines, and utilization review requirements) which could affect provider practice patterns.

Patient Responsibilities

1. PURSUE HEALTHY LIFESTYLES.

2. BECOME KNOWLEDGEABLE ABOUT THEIR HEALTH PLANS.

3. ACTIVELY PARTICIPATE IN DECISIONS ABOUT THEIR HEALTH CARE.

4. COOPERATE ON MUTUALLY ACCEPTED COURSES OF TREATMENT.

Synthesis Questions

• How do the Nuremberg Code and the Principles of Patient Rights compare? Is it possible to violate one and not the other?

• What is the relationship of race to the experiment? Why did President Clinton call the experiment racist?

Tuskegee Syphilis

ExperimentPart III: The People, Fictionalized and

Real

Miss Evers’ Boys

• Author David Feldshuh is a physician

• How does he portray the patients/subjects in this medical experiment?

• How does he portray the doctors in this medical experiment?

• How does he complicate the role of Nurse Evers, based on real Nurse Eunice Rivers?

Miss Rivers, R.N.(according to Dr.

Kampmier)“One cannot work with a group of people over a long period of time without becoming attached to them. This has been the experience of the nurse. She has had an opportunity to know [the patients] personally. She has come to understand some of their problems and how these account for some of their peculiar reactions. These ties are stronger than simply those of patient and nurse. There is a feeling of complete confidence in what the nurse advises...”

Questions

• How does Feldshuh draw on Kampmeir’s characterization of Nurse Rivers/Evers?

• How does he portray the relationship between Nurse Rivers/Evers and the subjects of the experiment?

• How does that portrayal complicate notions of guilt, innocence, and responsibility?

Dr. Kampmeir,“The Tuskegee Study”

“An exposition of the quarter-truth publicized will not reach the eyes of newsmen. It is just as well for it would be over their heads; furthermore they live to write today and forget tomorrow, irresponsible in the 'dissatisfaction' they create. Only a handful of us are left, who had much experience...and who had thus might put this recent 'tempest in a teapot' into proper historical perspective.”

Dr. Kampmeir,“The Tuskegee Study”

“"In our free society, antisyphilitic treatment has never been forced. Since [the subjects of the experiment] did not elect to obtain treatment available to them...[responsibility] lay at the subject's door and not in the Study's protocol.”

Dr. Kampmeir,“The Tuskegee Study”

“At no time in the 40 year [sic] Tuskegee Study is there a hint that treatment desired by a subject was denied him; in fact all the periodic reviews reveal that more and more of the subjects had chosen to be treated under the same circumstances as others in their community, albeit inadequately.”

"[W]hy should these men be singled out over their fellows in the community for treatment not forced upon others…”

Questions

• What is Dr. Kampmeir’s justification for characterizing the Tuskegee Study as a “tempest in a teapot”?

• Dr. Kampmeir argues that treatment should not be forced. Do you agree? Why or why not?

• What does “in the community” mean in Kampmeir’s explanations? How does Feldshuh portray that community in Miss Evers’ Boys?

Synthesis Questions

• Bearing in mind the patients rights and responsibilities, were the men—according to Kampmeir’s portrayal—in a position to exercise their right to be informed about choices?

• How does Feldshuh’s portrayal complicate notions of patient/physician responsibility?

Tuskegee Syphilis

ExperimentPart IV: Miss Evers’ Boys

Miss Evers’ Oath

I solemnly pledge myself before God and in the presence of the assembly;

To pass my life in purity and to practice my profession faithfully;

To hold in confidence all matters revealed to me in the practice of my calling;

To abstain from knowingly administering any harmful medicine;

To do all in my power to maintain the standard of the nursing profession;

To endeavor with loyalty to aid the physician in his work;

To devote myself to the welfare of those patients committed to my care.

Questions & Activity

As a group, closely read Miss Evers’ oath. Then respond to the following questions:

1.Why does Feldshuh being Miss Evers’ Boys with this oath?

2.Did Miss Evers break her oath as it is portrayed here?

3.How might this oath be amended to reflect post-Tuskegee concepts of patient rights and responsibilities?

Questions & Activity

On the following slide are a selection of quotations from the text.

1.As a group, choose one of the quotations and explore its meaning in the context of the play.

2.Prepare to present your explanation to the class.

Questions & Activity

• The “messy middle ground” (44)

• The role of explanation (22-26)

• The role of translation (20-21)

• The importance of a good bedside manner “never been a great patient doctor” (33)

• The importance of mediation (3)6

• The role of Dr. Brodus as an African-American physician (41, 25)

• The importance of honesty and the role of miscommunication (43).

Synthesis Questions & Activity

On the following slide are a selection of questions.

1.As a group, choose one of the questions.

2.Locate two passages within the text that help you answer the question.

3.Craft a thesis statement in response to the question that draws on the evidence you have located within the play.

4.Prepare to present your explanation to the class.

Synthesis Questions and Activity

• Why does Feldshuh focus on the character of Miss Evers?

• How does that focus complicate our understanding of guilt in this situation?

• Identify a passage that portrays social, institutional, or personal conflicts as regards race and power in this play. Where does Feldshuh place the blame?

Synthesis Question

Does literature help us understand ethical issues? Why or why not?

Reference List

----, “The Nuremberg Code,” Department of Health and Human Services. Web.

----, “Principles of Patients' Rights and Responsibilities,” National Health Council. Web.

----, “The Tuskegee Timeline,” Center for Disease Control and Prevention. Web.

Aronowitz, Robert, “The Bowery Series and the Transformation of Prostate Cancer, 1951-1966,” Bulletin of the History of Medicine 88.2 (Summer 2014): 287-317.

Feldshuh, David, Miss Evers' Boys (Dramatist Play Services, Inc. 1998).

Kampmeier, R. H., "The Tuskegee Study of Untreated Syphilis". Southern Medical Journal 65.10 (1972): 1247–51.

White House Office of the Press Secretary, “Presidential Apology: Remarks by the President in Apology for Study Done in Tuskegee,” The East Room. Released May 16, 1997. Available via CDC website, op. cit..