The Syphilis Experiment Alyssa Emanuelson, MS, MAT, ATC

Tuskegee Study of Untreated Syphilis in the Negro Male Study started in Tuskegee Institute with the Public Health Service – Record the natural hx of syphilis – Hoped to justify treatment programs for blacks Participants – Initially black men 399 had syphilis 201 didn’t have syphilis

Purpose of Study Determine the natural course of untreated latent syphilis The study was meant to discover how syphilis affected blacks as opposed to whites—the theory being that whites experienced more neurological complications from syphilis, whereas blacks were more susceptible to cardiovascular damage. How this knowledge would have changed clinical treatment of syphilis is uncertain.

Ethical Issues of this Study 1)No Informed Consent 2)Not informed of all known dangers 3)Participants had to agree to autopsy after death to have burial paid for 4)Scientists denied treatment to some patients in order to observe the individual dangers and fatal progression of the disease 5)Participants not given a cure, even when widely known and easily available 6)Misleading advertisement—subjects not given treatment—they were recruited for a very risky spinal tap-diagnostic

Informed Consent Conducted without the benefit of informed consent Men were being treated for “bad blood” – Ailments including syphilis, anemia, and fatigue Didn’t receive proper care to cure illness In exchange: – Free Medical Exams – Free Meals – Burial Insurance Projected to last 6 months—it lasted 40+ years

Informed Consent Continued Not informed about the whole purpose of the research Not informed of dangers of study Experiment was considered as beneficial for humankind – Human Guinea Pigs

Human Guinea Pigs Nature of study kept quiet to ensure compliance Grossly disadvantaged lifestyle made them easy to manipulate Pleased by prospect of “free” healthcare – Many had never seen a doctor before Last chance for “free medical care” – Lured men to dangerous spinal taps

Syphilis Bacterial Direct contact through oral, anal, and vaginal sex Pregnant women can pass it on to babies S/S – Sores from where entered body – Rashes in secondary stage Latent stage – Damage internal organs Treat with Penicillin

Data from study Data for the experiment was to be collected from autopsies of the men, and they were thus deliberately left to degenerate under the ravages of tertiary syphilis—which can include tumors, heart disease, paralysis, blindness, insanity, and death. “As I see it,” one of the doctors involved explained, “we have no further interest in these patients until they die.”

Penicillin By 1947 Penicillin had become standard treatment to cure syphilis Instead of closing the study and giving the cure, the scientists withheld treatment from participants

Treatment Treatment of time – bismuth, neoarsphenamine, and mercury but only 3% survive with those – Token treatment = good PR but didn’t really do anything

End of Study Study ended in 1972 after the AP exposed the study in a series of articles – More than 25 years after the known cure Consequences of study – 28 people died from syphilis – 100 died from related diseases – 40 wives and 19 children infected with syphilis

Basic Principles Required to follow today… Autonomy Veracity Beneficence Non-malficence Confidentiality Justice Fidelity Code of Ethics Scope of Practice Patient’s Rights

Activity Scavenger hunt! – With your SLP group, you are to use one of the “babies” to look up the term listed on the screen and give me an example of it that makes sense. The first group to do so wins a point the team with the most points wins

Patient Autonomy What is? Why is it important? Example…

Patient Autonomy Autonomy: right of patients to make decisions about their medical care – Medical Provider can’t influence decision – Medical provider must educate pt. but can’t make decision for pt.

Veracity What is it? Why is it important? Example…

Veracity The ethics of telling the truth Accountable for what they tell the patient White lies not okay…

Beneficence What is it? Why is it important Example…

Beneficence Action that is done for the benefit of others. Beneficent actions can be taken to help prevent or remove harms or to simply improve the situation of others. Doctors must refrain from harming pts. Weigh benefits vs. risks of treatment (big issue in Miss Evers’ Boys)

Non-Malficience What is it? Why is it important? Example…

Non-Malficience Do no harm. Physicians must refrain from providing ineffective treatments Not acting with malice toward patients. Some beneficial treatments may also have inherent risks

Confidentiality What is it? Why is it important? Example…

Confidentiality Duty to keep patient’s confidence Full and frank disclosure from pt. to MD—so that diagnosis can occur Shouldn’t reveal what was said (with exception to when pt. threatens bodily harm to self/others)

Justice What is it? Why is it important? Example…

Justice Fair distribution of health care resources Elimination of discrimination, whether based on race, gender, age, socioeconomic status, ethnicity, religion, or any other social category

Fidelity What is it? Why is it important? Example…

Fidelity Patients’ interests first in mind above all others Maintenance of patient trust and confidences Obligates them to carry out their promises to care for patients with faithful attention

Code of Ethics What is it? Why is it important? Example

Code of Ethics Competent medical care – Dignity and compassion Professionalism Respect the law Continue to study, apply, and practice knowledge relevant to the field Respect the rights of patients, families, and colleagues – Confidentiality Access to medical care for all Patient needs before personal preferences Aid in and better the community

Scope of Practice What is it? Why is it important? Example…

Scope of Practice Used by national and state/provincial licensing boards for various professions that defines – procedures, actions, and processes that are permitted for the licensed individual. What you are allowed to do as a professional – Nurse vs. Doctor – Athletic Trainer vs. Physical Therapist

Patient’s Rights What is a patient’s rights? Why are they important? Example…

Patient’s Rights Right to access of easily understandable health information Right to choice of providers Access to emergency service Taking part in treatment decision Respect and non-discrimination Confidentiality Complaints and appeals processed fairly and in a timely manner

Assignments ICC Terms Assignment Reaction Paper