Medical Ethics The Tuskegee Syphilis Experiment Katherine McLoone, Ph.D. Department of Comparative World Literature and Classics California State University

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  • Medical EthicsThe Tuskegee Syphilis ExperimentKatherine McLoone, Ph.D.Department of Comparative World Literature and ClassicsCalifornia State University Long Beach

  • Ethics and the BodyIntroduction

  • Medical EthicsIn 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 AboutWhat 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 AboutHow is power conceptualized in medical relationships?How do individuals relate to power structures?How might we deal with being diagnosed or labeledand can we reject, alter, or amend those diagnoses or labels?How does privilegesocial, economic, racial, gender, ableistcomplicate notions of rights and responsibilities of patients?

  • Tuskegee Syphilis ExperimentPart I: The Context of the Experiment

  • Tuskegee, Alabama399 poor African-American men with syphilis studied from 1932-1972 (control group: 201 men without) Post-1940s, penicillin introducedMen not given penicillinPost-1947, Nuremburg CodeExperiment did not adhere to Nuremburg Code1997: The US apologized.

  • Tuskegee Research AbuseStudy deceived patients into the reason for the inquiry, or even that an inquiry was occurringit 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 BenefitsStudy was not racist in the beginningPatients did receive some monetary benefit

  • QuestionsDo 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 StudyPopulation: 1200 Skid Row residents with and without prostate cancerProcedure: cutting out part of the prostate for biopsyTreatment: surgical removal of prostate, surgical and chemical castration, estrogenResults: rectal lacerations, impotence, diminished sexual function

  • 1946-48US 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. ClintonWhat 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 CodePost-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 Code9. 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 RightsPrinciples 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 Rights1. 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 Rights3. 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 Rights6. 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 Responsibilities1. 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 QuestionsHow 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 BoysAuthor David Feldshuh is a physicianHow 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