Tuskegee Syphilis Study

Dr. Joseph Costa, DHSc., PA-C

Health Policy and Management

MPH 525

Aaron Sweazy

June 20, 2014

Table of Contents

Chapter Page

1.Introduction...................................................................................................................................3

The Basis of the Research............................................................................................................3

2.Exploring Ethics of Tuskegee.......................................................................................................4

Where We Went Wrong...............................................................................................................4

Why it was pursued......................................................................................................................4

Mirroring Tuskegee......................................................................................................................5

3.Personal Opinion..........................................................................................................................6

My Philosophy on Tuskegee........................................................................................................6

4.Informed Consent and Beneficence..............................................................................................9

Informed Consent.........................................................................................................................9

Individual Autonomy & Beneficence.........................................................................................10

When Consent is not Needed.....................................................................................................12

Waiving Consent........................................................................................................................13

5.Conclusion..................................................................................................................................14

Summary....................................................................................................................................14

6.Recommendations.......................................................................................................................15

References......................................................................................................................................16

3

Chapter 1.

Introduction

The Basis of the Research

Three years prior to the start of the Tuskegee Syphilis Study, the U.S. Public Health

Service (USPHS), piloted research in the rural South to determine the incidence of syphilis

amongst African-American males, and search the potentials for a mass cure. The USPHS

discovered that in Macon County, Alabama, where the city of Tuskegee is situated, there was a

peak in syphilis frequency of the six counties reviewed. This particular research in 1929 was

called The Rosenwald Study and was authored by Dr. Taliaferro Clark, Chief of the USPHS

Venereal Disease Division. In the study it was deemed mass action could be successfully

executed in African-American men from rural settings (Brandt, 1978). In 1929, the project was

shelved due to the collapsing of the United States’ economy, but in 1932 the information by Dr.

Clark was resurrected to create The Tuskegee Syphilis Study. The Tuskegee Syphilis Study has

since become a measure of how not to conduct research practices on human beings. For 40 long

years (1932-1972), the Public Health Service (PHS), partnering with the Tuskegee Institute

(currently known as Tuskegee University) conducted the Tuskegee Syphilis Study. This study

was initiated in a collection of African-American men with the idea of gaining wisdom of

syphilis and attempting to warrant treatment arrangements for blacks. The study at first had the

participation of 399 syphilis carrying black men out of 600, the remaining 201 men in the study

did not have the infection. The Tuskegee Syphilis Study was complicated greatly due to the

circumstances of it being completed lacking the permission by the men who were infected with

the syphilis to carry on the study (Centers for Disease Control, 2011).

4

Chapter 2.

Exploring Ethics of Tuskegee

Where We Went Wrong

When looking back at the significance of authoritative abuse as result of the Tuskegee

Syphilis Study, one could conclude there were many atrocities established on how research was

conducted. The USPHS duped those men in the study into believing they were actually getting

quality care. The men, were never were informed they were given syphilis, just that they were

infected with “bad blood” which then was subsequently passed on to their spouses and children.

The USPHS convinced the young black men to undergo spinal taps by designating the spinal

taps as a “special free treatment”.  The men of Tuskegee were promised health treatments and

hot food at mealtimes. The USPHS took advantage of the shortage of education and money

among the black men, and had them believe they were helping them in the long run. Sadly,

throughout the core portion of the study there were under no circumstances any real treatment

since the model of the research was to grasp in what manner untreated  syphilis reacted in

African-American men (Jones, 1981).

Why it was pursued

Initially the study began with the idea of treating and curing those infected at no cost.

Due to this, a large quantity of people began to seek treatments which in turn raised expenses for

the USPHS’ study. In reaction to the large crowds, the USPHS settled on the notion of

redirecting their effort to explore untreated syphilis. This idea came from a study which

followed Caucasian men in Oslo, Norway, engaged in early stages of syphilis at a period when

mercury was the lone thought of cure (Encyclopedia of Alabama, 2013). The personal thoughts

5

on this are the Tuskegee Syphilis Study was conducted for such a long time, because of the

willingness of the participants (albeit they didn’t know what was going on). The best way to

test effects of how something would react in a human being isn’t by testing it on monkeys, rats

or other animals, but by testing it on other humans. Unfortunately like a monkey or rat, these

young black men were treated like animals over the course of this 40 year study. It seemed the

medical profession’s quest for research was ongoing due in part to wanting an overall end result

(or mortality) of the patients in the study and to follow the progression of how their demise

came to be. Evidence of the prolonging of the study could disturbingly be linked through a

quote by one of the doctors involved in the study. The doctor, (to which no name was identified)

elaborated, “As I see it, we have no further interest in these patients until they die.” (Midwest

Conservative Journal [MCJ], 2009)

Mirroring Tuskegee

Although it was unknown discovered until 2009, atrocities by the United States in

medical research were happing in more than just Tuskegee. Susan M. Reverby, a medical

historian at Wellesley College located Wellesley, Massachusetts, stumbled upon documentations

by raking through the archived accounts of Dr. John Cutler, a US physician whom was also

linked to the Tuskegee study (Mail Foreign Service, 2010). Reverby discovered while the

Tuskegee Study was going on, scientists from the United States were being equally diabolical

from by infecting approximately 1,500 Guatemalans with syphilis and gonorrhea (Smith, 2010).

Unlike Tuskegee however, the Guatemalans received treatment and this study was only over a

two year span.  The Guatemalan project was co-sponsored by the USPH, the National Institutes

of Health (NIH), the Pan American Health Organization (formerly known as the Pan-American

Health Sanitary Bureau) and the Guatemalan administration (Bazell, 2010). 

6

Chapter 3.

Personal Opinion

My Philosophy on Tuskegee

Mentioned earlier in the writing was the realization by the USPHS in which they

discovered they did not have adequate amount of supplies or funding to carry on the original

base idea of treating the black men and then curing them. A bait and switch tactic was utilized

and nobody knew the difference except for the health care providers that were behind this

scheme from the get go. In the moment of realization they didn’t have the funding to carry on

the project to cure all the men, I would assume the USPHS felt trapped, and knew if they were to

release information, they would lose credibility in the eyes of many citizens. The lacking of

management is what really created a rift in the Tuskegee Syphilis study. If there had been the

correct leadership managing this experiment, things would have been done correctly.

Individuals would have been notified about the ramifications of syphilis and what the study was

proposing to find. The USPHS should have followed the three core functions of public health;

assessment, policy development, and assurance (see Figure 1 below).

Figure 1 (National Association of County & City Health Officials [NACCHO], n.d.)

7

The USPHS assessed the individuals’ health and knew what was going on, so they in a

way followed assessment but not ideally in the way a medical entity should follow protocol.

The USPHS was lacking in policy development and assurance. There should have been

information presented to those in the study through meetings either one-on-one or in a group

setting to explain what had occurred. Reading materials although ideal would probably not been

ideal due to the low socieo-economic class of those tested were more than likely illiterate.

Realizing they were in over their heads with the lack of funding for the original idea of curing

the men of Tuskegee, the USPHS should have then called upon local community partnerships

like churches to help in the collection of funding. Community involvement through an

educational process designed to enable those infected to make choices based on their condition

should have been implemented as well. Once the development of policy was in place, there

should have been links to provide care, a competent workforce to help those in need and an

overall evaluation of those infected by the Syphilis as a practice of good assurance. By

incorporating the three core functions of public health, the research of Tuskegee would have

been perhaps more ethically accepted because precautions were taken and steps followed.

Ideally, informed consent would have been the route to go with initially to avoid all the resulting

chaos. It was 20 years earlier in 1914 when Supreme Court Justice Benjamin Cardozo said it

best, “Every human being of adult years and sound mind has a right to determine what shall be

done with his body, and a surgeon who performs an operation without his patient’s consent

commits an assault for which he is liable in damages.” (Schloendorff v. Society of N.Y. Hospital,

1914) Consent gives the right to treat which really doesn’t do much if risks of the study aren’t

addressed with the patients. Following their mismanagement of the study, the USPHS in my

opinion should have come up with alternatives once they realized they did not have the funding

8

in place to follow through with the original intent of the research being conducted. A “best

alternative to a negotiated agreement” also known as BATNA (Burke & Friedman, 2011) could

have been put in place to attempt to pacify the needs of the patients infected with the syphilis.

They men were told they would have free health care if they participated in the study, but were

lied to. They should have been informed when funds weren’t available and placebos were given

instead. They continued to suffer, but if alternatives would have been given (albeit maybe not

the most desired), then the men and their families would at least have say in the matter in how

their life would be impacted, maybe have obtainable alternatives in place in lieu of medicinal

shortfalls such as supplying food and clothing to the families to appease them for their suffering

would be adequate for some. For those adhering to the alternative, they would receive the

negotiated substitute, while those not going for it, would be wait listed for the funding or

medical supplies to cure the syphilis.

On the opposite end of the spectrum, a radical idea I had for the given situation albeit

controversial as well, would have be to take all the names of those infected that were males

should have went into a draft (like Vietnam). However, unlike Vietnam you would prefer if your

name was drawn, as you would be given treatment to alleviate and hopefully cure your

symptoms. In the proposed draft model I would also have made it so if your name was drawn;

all minors that are immediately related to the father, living within the household would be treated

as a preventative measure to keep them from getting syphilis. If a child had already contracted

syphilis, the proper medical actions should take place to treat them and follow ups should occur

for all in the household as well. If you are married, your spouse would be allowed to receive

treatments additionally, with the hopes of potentially preventing the likelihood of

recontamination of the syphilis due to sexual intercourse.

9

Chapter 4.

Informed Consent and Beneficence

Informed Consent

 The procurement of informed consent is founded on the premise of moral principles.

While legally signed documentations are extremely vital this day in age with public health, in an

informed consent situation they signed documents are not adequate when unassisted. Informed

consent should include assistance through a method of communication which allows for a patient

to have the empowered ability to create an educated and controlled conclusion about accepting or

rejecting medical treatment (The American College of Obstetricians and Gynecologists [ACOG],

2009). The ideology of informed consent was created to keep the best interest of a patient’s

moral principles in mind when treatment is presented. Objectives, deliverables, and anticipated

impact of what informed consent should provide can be found in below (see Figure 2).

Figure 2 (Clinical Trials Transformation Initiative [CTTI], 2013)

10

Individual Autonomy & Beneficence

Informed consent at its greatest value would utilize individual autonomy for the patient.

The chief idea of individual autonomy ideally is to afford the opportunity of the patient in

question to come to a conclusion what methods of treatments would be in their best interest. The

informed consent of the individual should additionally be manifested in the patient without

submitting to the influence of outside powers (Stanford Encyclopedia of Philosophy [SEP],

2009). To aid in individual autonomy, the beneficence of medical authorities explaining all

potential ramifications (the facts) of treatment should be made in order for the patient to make

the most educated decision as possible (without forcing them to decide what that physician

necessarily thinks is best) when determining treatment options. The controversial physician Dr.

Jack Kevorkian was a huge proponent of individual autonomy. Kevorkian was best known

assisting patients in “assisted suicide” and was even debated as an angel of mercy or a murderer

on the cover of Time Magazine (See Figure 3)

Figure 3(Liess & TIME Magazine, 1993)

11

Dr. Kevorkian’s thought on individual autonomy was simple when he stated the

following; “the patient's autonomy always, always should be respected, even if it is absolutely

contrary_ the decision is contrary to best medical advice and what the physician wants.”

(Kevorkian, 1996). The benefit of allowing patients to make decisions based on their personal

philosophies of medical care, gives them greater trust in the medical field. Individual autonomy

is needed in society because not all situations are the same for everyone. An example of

autonomy for individuals might be; an 80 year old widow who was in a vehicle crash and wishes

not to have procedures to save her life, or a young married couple who has to decide to risk the

life of the mother to save an unborn child with no guarantee of both surviving. Forcing people to

adhere to principles not suitable for their beliefs, will be met with opposition as humorously

show in Figure 4.

Figure 4(Diy.despair.com, n.d.)

12

When Consent is not Needed

Hypothetically speaking say you are a doctor on the way home from work. As you are

driving along you notice someone waving frantically at you to pull over. There is a person lying

face down in on a nearby sidewalk, and the person who flagged you down is a fellow pedestrian.

The victim is unconscious, and not breathing, and appears to have had a heart attack. The

victim further appears to be a male in his mid-60’s but does not have any information on him to

verify age or their faith. You inform the fellow pedestrian to call 9-1-1 and you begin chest

compressions.  When the ambulance arrives, they are able to save the man, unfortunately though

he is left with partial paralysis due to the amount of time he was deprived of oxygen. Because

your intent was to save the person based on your morality and public sense of duty, consent

wasn’t necessary due in part to what is known as a Good Samaritan Law (American Academy of

Orthopedic Surgeons (AAOS) & Morris, 2014). Additionally, if a person is incompetent where

they cannot freely act on their own accord, they could be free of autonomy in making the

consent, which in turn would then be handled by a surrogate. An example of the

aforementioned could be as follows: A person is a bull-rider and they get bucked off and gored

resulting in a vegetative state, a second party (family typically if there, if not a doctor) has the

right to quit treatment of the patient if they believe there are no other solutions that could help.

Back in 1983 there was a classic example of a surrogate consent mentioned above, which

occurred in the case of Barber v. Superior Court (1983). In the case it was reasoned that a

doctor’s failure to continue care of a brain- dead individual came at the wishes of the individual’s

family, and because of those wishes it is not illegal due to family consent, and consequently is

not punishable under the extent of the law (Barber v. Superior Court, 1983).

13

Waiving Consent

Consent is has long been known to not be needed if you are informed of all your rights

and willingly decide to waive those rights. Although this isn’t as common in the public health

field, it does play out through the legal system if a person chooses to waive their right to remain

silent (MirandaWarning.org, n.d.). The waiving of consent for some areas of clinical

investigation already exists to an extent.  In a “dammed if you do, dammed if you don’t” society,

loopholes have already been masterminded by those in the medical fields. Usually in the fine

print of documents you sign to permit surgery for example, it states in the event of paralysis or

even death, the individual and their family waives their rights to sue. This is an experience I

personally have encountered in dealing with treatments for Hodgkin’s Lymphoma. For some

individuals if they don’t sign the documentation, and the procedure is not deemed a necessity

(such as a cosmetic surgery), then the physicians involved have the right to deny doing your

surgery. Vulnerable populations to this day are still being duped into test markets for research,

case in point while walking along in Las Vegas this past winter there was a research company

offering $50 if you participated in a 10 minute survey. On the medical standpoint I have seen

where you can make money by selling your breast milk, to me this is a whole new level of not

only taking advantage of a person financially but physically as well, with incentives of selling as

high as $2 an ounce(Batai, n.d.). In spite of having guidelines such as the Nuremberg Code and

the Belmont Report there are some unethical practices still going on to this day. I personally see

a fallacy in the Belmont Report is many folks do not fully comprehend what is going on in terms

of medical practice due to language barriers(US Department of Health and Human Services

(HHS) [HHS], 1979), such as when translation from someone fairly new to the English language

attempts translating to a relative, resulting in mixed messages.

14

Chapter 5.

Conclusion

Summary

. This Tuskegee Syphilis Study was initiated in a collection of African-American men

with the idea of gaining wisdom of syphilis and attempting to warrant treatment arrangements for

blacks. The study at first had participation of 399 syphilis carrying black men out of 600 total,

the remaining men in the study did not have the infection. The Tuskegee Syphilis Study was

complicated greatly due to the circumstances of it being completed lacking the opportunity of

permission by the men who were infected with the syphilis The proceedings that took place at

Tuskegee were proven to be of poor policy by the USPHS. By not planning adequately for large

amounts of patients coming forward to seek treatments, they in turn created a “scape-goat”

mentality which backfired. The men of the Tuskegee Syphilis Study, were never were

informed they were given syphilis, just that they were infected with “bad blood” which then was

subsequently passed on to their spouses and children. The USPHS convinced the young black

men to undergo spinal taps by designating the spinal taps as a “special free treatment”.  The men

of Tuskegee were promised health treatments and hot food at mealtimes. The atrocities of the

Tuskegee Syphilis Study to this day are comparable to the evils of Hitler’s Nazi regime and the

countless hours of testing on innocent Jewish individuals in camps. Forty years of torture

occurred to our own citizens by our own public health service. Thanks in part to the sacrifices of

the Tuskegee men’s well-being; we have many safeguards in place these days in the ideals of the

Nuremberg Code and the Belmont Report. Individuals nowadays have more freedoms in self-

governance by informed consent as well.

15

Chapter 6.

Recommendations

In order to prevent events like the Tuskegee Syphilis Study from ever happening again

there should be some things looked at. Studies financially coming short should not be allowed

to “bait and switch” like in the Tuskegee Syphilis Study, without informing those involved with

the study as to the shortfalls financially. Additionally, in the given scenario, remuneration for

any sustained medical ailments suffered from the studies should be paid in full by the

organization conducting the study. In a case of studies involving low socio-economic patients,

adequate time and explanations should be given in person, or through an approved translator

provided through the agency conducting the test with the approved translator being signed off on

by a third party with no relation to the organization conducting the study. Women past the first

trimester of pregnancy should not be allowed to be in any clinical trial not associated with

pregnancy and the betterment of it, in order to protect mother and fetus. I believe we also should

utilize those individuals incarcerated on death row for an exemption to medical studies. By

taking those who have committed some of the foulest of carnages we could in turn save potential

lives in the future by using them as human test subjects. My thought on this is if we are planning

on injecting them, hanging them or electrocuting them, why not think of the greater good and

utilize them (albeit some may cry unethical) to improve medical advancements? Outside of the

prison walls however should be based on competency of individuals involved, meaning if you

aren’t of a set mindset, then you can’t participate in certain studies. Reward folks for being

smart or having celebrity status that participate through higher incentives for the educated and

affluent to subject themselves to testing, like creating an endowment for $1 million to their

favorite university or nonprofit agency in the event of death due to the study.

16

References

American Academy of Orthopedic Surgeons (AAOS), & Morris, E. (2014, January 14). Liability under “Good Samaritan” Laws. AAOS Now January 2014 Issue. Retrieved from http://www.aaos.org/news/aaosnow/jan14/managing3.asp

Barber v. Superior Court, Citation. 22 Ill.147 Cal.App.3d 1006, 195 Cal.Rptr. 484 (Ct. App. 1983) Bloomburg Law (California Ct. App 1983).

Batai, M. (n.d.). 5 Ways to Make Money With Paid Medical Research Studies & Donations. Money Crashers. Retrieved from http://www.moneycrashers.com/paid-medical-research-studies-donations/

Bazell, R. (2010, October 1). U.S. apologizes for STD experiments in Guatemala. NBCNEWS.com, . Retrieved from http://www.nbcnews.com/id/39456324/ns/health-sexual_health/t/us-apologizes-guatemala-std-experiments/#.U6S9T_ldWSo

Brandt, A. M. (1978, December). Racism and Research: The Case of the Tuskegee Syphilis Study. Hastings Center Magazine. Retrieved from http://www.med.navy.mil/bumed/Documents/Healthcare%20Ethics/Racism-And-Research.pdf

Burke, R. E., & Friedman, L. H. (2011). Essentials of Management and Leadership in Public Health . Sudbury, MA: Jones & Bartlett Learning.

Centers for Disease Control (2011, June 13). U.S. Public Health Service Syphilis Study at Tuskegee. . Retrieved from http://www.cdc.gov/features/tuskegee/index.html

Clinical Trials Transformation Initiative. (Cartographer). (2013). Snapshot of CTTI’s Informed Consent Project [Informative Chart]. Retrieved from http://www.ctti-clinicaltrials.org/what-we-do/study-start-up/informed-consent

Diy.despair.com. (Cartographer). (n.d.). AUTONOMY [Humor Poster]. Retrieved from http://trendspig.com/static/db71ef87d1b67575235f3a5926e90037.jpg

Encyclopedia of Alabama (2013). Tuskegee Syphilis Study. Retrieved from http://www.encyclopediaofalabama.org/face/Article.jsp?id=h-1116

Jones, J. H. (1981). “Last Chance for Special Free Treatment”. In Bad Blood (Rev. 1993 ed. (pp. 113-131). [Google Books]. Retrieved from www.books.google.com

Kevorkian, J. (1996, May 14). FRONTLINE Show #1416-The Kevorkian Verdict [Television transcript]. : Public Broadcasting Service.

17

References (Cont.)

Liess, S., & TIME Magazine (1993, May 31). Cover Photo: Doctor Death. . Retrieved from http://content.time.com/time/covers/0,16641,19930531,00.html

Mail Foreign Service (2010, October 4). U.S. apologises for scientists DELIBERATELY infecting mentally ill patients with STDs . . Retrieved from http://www.dailymail.co.uk/news/article-1317062/US-apologises-scientists-infecting-mentally-ill-patients-STDs.html

Midwest Conservative Journal. (2009, December 15). TUSKEGEE II. Retrieved from http://themcj.com/?p=8481

MirandaWarning.org. (n.d.). What are your Miranda Rights? Retrieved from http://www.mirandawarning.org/whatareyourmirandarights.html

National Association of County & City Health Officials. (Cartographer). (n.d.). Functions of Public Health in Systems Management [Public Health Chart]. Retrieved from http://www.naccho.org/topics/infrastructure/CHAIP/

Schloendorff v. Society of N.Y. Hospital, 211 N.Y. 125, 105 NE 92 http://wings.buffalo.edu/bioethics/schloen0.html (1914).

Smith, S. (2010, October 2). Wellesley professor unearths a horror: Syphilis experiments in Guatemala. The Boston Globe. Retrieved from http://www.boston.com/news/local/massachusetts/articles/2010/10/02/wellesley_professor_unearths_a_horror_syphilis_experiments_in_guatemala/

Stanford Encyclopedia of Philosophy. (2009). Autonomy in Moral and Political Philosophy. Retrieved from http://plato.stanford.edu/entries/autonomy-moral/

The American College of Obstetricians and Gynecologists. (2009). Informed Consent (Update of “Informed Consent” in Ethics in Obstetrics and Gynecology, Second Edition, 2004). Retrieved from https://www.acog.org/Resources_And_Publications/Committee_Opinions/Committee_on_Ethics/Informed_Consent

US Department of Health and Human Services (HHS). (1979, April 18). The Belmont Report. . Retrieved from http://www.hhs.gov/ohrp/humansubjects/guidance/belmont.html