The Tuskegee Syphilis Experiment
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Transcript of The Tuskegee Syphilis Experiment
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The Tuskegee Syphilis ExperimentAN ETHICAL BREACH IN THE NAME OF SCIENCE
Caela Long, Marissa McGovern, Zack Marsh, Christopher Merrill, and Christina Monnie
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Background of the Study
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What is Syphilis? Sexually Transmitted Disease
Symptoms include (but not limited to): Sores Rashes Brain Damage/Death
Three Stages of Syphilis (examined in this study): 1) Primary: single sore lasting 3-6 weeks2) Secondary: skin rashes and more sores3) Latent: no sores, dormant form of the disease
- Late/Tertiary: deadly form, attacks central nervous system other vital organs such as the heart and liver
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Syphilis and Study Timeline
1900 2013
1905: Bacterium causing syphilis isolated
1907: Blood test for syphilis developed
1926: 35% prevalence of syphilis in African Americans
1929: mercury and bismuth treatment <30% effective
1931: Rosenwald Fund discontinues funding
1932: PHS follow up studies commenced. Interns/nurses from Tuskegee Institute get involved.
1945: Penicillin accepted as treatment of choice
1972: First news articles condemn studies. Study ends.
1973: Congress holds hearings and lawsuit on behalf of participants
1974: Participants receive $10 million settlement
2004: Last participant dies
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Origins of the Study The initial goal was to understand and examine the prevalence of syphilis in Macon
County, Alabama among African American males. Funded by the Julius Rosenwald Fund.
Cut funding in 1931 due to the racial associations of the results. 35% of African American males in Macon County had syphilis.
U.S. Public Health Service (PHS) conducted follow up studies led by: Tuskegee Institute provided resources and interns (for training) Dr. Taliaferro Clark formulation of study Dr. Raymond Vonderlehr selected the participants
The “modified” goal was to study untreated syphilis in African Americans compared to Europeans. Started in 1932.
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The Tuskegee Syphilis Experiment The study included:
399 infected African American men 201 uninfected African American men
These men were promised: Free medical care/treatment Free burial
The duration of the study was from 1932-1972.
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How did the PHS prolong this study for 40 years?
They thought the patients wouldn’t seek medical help anyways Since the patients were still suspicious of hospitals Rationalized the racial aspects of the experiment:
Poor They did not treat the control group who got syphilis The patients thought they were being treated The promises of free medical care/treatment and free burial Ignored criticism from papers Public was never informed CDC, AMA, and NMA all supported its continuation in 1969
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The Main Reason for the Successful Prolongation
The PHS prevented the patients in the study from being treated
Kept local doctors from providing treatment
Informed Alabama Health Department to not treat the patients
Informed the government/military not to treat the drafted patients of the study
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The Termination of the Study The Whistleblower
Peter Buxtun PHS Venereal Disease Investigator Questioned the morality and ethics of the experiment The PHS decided to still let the project go until completion Buxtun went to the press in the early 1970s
In 1972 it was finally brought to the public’s attention Jean Heller of the Associated Press was published in the
New York Times The study ended quietly and suddenly
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Ethical Concerns
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Evidence of Ethical Violations
Never informed that they were part of a medical study
Patients were being treated for “bad blood”
Treatment was withheld from the patients
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What caused the breach in ethics? Early treatments using heavy metals (mercury) were not
administered to the patient.
The medical staff tracked the patients assuring that patients were not administered treatment.
Penicillin treatments were never given to the patients.
Paid for their Burials enticement The patients and their families were never told the bodies would be
autopsied.
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Ethical or Not?
Syphilis in African American males is different than syphilis in white males and needed to be further studied
Early treatment for the disease was dangerous
Many of the men were too sick for Penicillin treatment to be effective
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Outcomes
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Outcomes: Patients
At least 28 of the 399 affected men died from advanced syphilis
Some wives and children of those in the study contracted the disease because the men weren’t treated
National Association for the Advancement of Colored People (NAACP) filed a class-action lawsuit Won $10 million to be divided among the participants of the study
Those still alive, wives, widows, and children got free health care
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Outcomes: Society
National Research Act
Law created to protect human subjects in research
Passed in 1974
National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research was created as a result.
The Belmont Report summarized the basic ethical issues that needed to be followed when doing research
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Outcomes: Formal Apology
President Clinton apologized to those involved and had a ceremony for them in 1997.
"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.”
-President Clinton
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Cost to Society
African Americans not trusting in the public health system or the government
In a survey given to African Americans by Oregon State 16% believe that AIDS was created by the government to control the black population and 15% believe it is a form of genocide
African Americans have less confidence that efforts are trying to be made to control AIDS and other health problems in their communities
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Overview/Recommendations
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Overview
Reported 28 men died directly: 100 more died of related complications 40 wives reported having some form of syphilis 19 children were born with congenital syphilis
Indirect Implications Who knows?
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Who is Culpable? What Could’ve Prevented This?
Directly: PHS Doctors Clark and Vonderlehr
Indirectly: Tuskegee Institute
Interns/Nurses Afraid? Eunice Rivers
Government and Outside Doctors trying to administer Penicillin
Why didn’t anyone speak up? Didn’t it cross their mind?
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Preventing A New Tuskegee Experiment Difficult to Imagine
Clinical Trials Placebo vs. Treatment
Long Studies Obsession
Recommendations: Arm Yourself with Knowledge Institutional Review Boards protect from outside distractions
First line of defense present before every study Ask questions Look into treatments used Be active in the studies “See Something, Say Something”
Pressure Superiors
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Piecing It All TogetherRelevance
Beneficiaries Present and Future Clinical StudiesStudentsProfessions with Science Backgrounds
Especially Researchers
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References Brandt, Allan M. “Racism and Research: The Case of the Tuskegee Syphilis Study.” The
Hastings Center Report , Vol. 8, No. 6 (Dec., 1978), pp. 21-29 Brunner, Borgna. “The Tuskegee Syphilis Experiment.” 2005. Retrieved June 07, 2013. "Case Study 3: The Tuskegee Syphilis Study" Online Ethics Center for Engineering 7/20/2006
National Academy of Engineering Accessed: Thursday, June 13, 2013 <www.onlineethics.org/Education/precollege/scienceclass/sectone/chapt4/cs3.aspx>
Chadwick, A. (Performer) (2002). Remembering tuskegee [Web series episode]. In Morning Edition. Washington DC: National Public Radio. Retrieved June 06, 2013, from http://www.npr.org/programs/morning/features/2002/jul/tuskegee/
Manuel-Logan, R. (2012, July 26). Black Urban Legends, Black Conspiracy Theories HIV AIDS | Breaking News for Black America. Breaking News for Black America | News One. Retrieved June 06, 2013, from http://newsone.com/2026978/black-urban-legends-hiv-aids/
“Research & Economic Development.” History of Research Ethics. Web. 13 June 2013. www.ors.umkc.edu
“The Tuskegee Timeline." Centers for Disease Control and Prevention. Centers for Disease Control and Prevention, 15 June 2011. Web. 13 June 2013
Images Acquired using www.google/images