The Tuskegee Syphilis Study Review

By: Andrew Trinh, Alondra Andrade, Nicole Brice, Navjot Saini, Lorena R, Marie and Tajon-Scott

Basic Infomation (Background) ● Tuskegee Syphilis Study/Tuskegee Study of

Untreated Syphilis In the Negro Male - Location: Macon County, Alabama - Tuskegee University (Historically black college)

● Purpose: Observe natural progression of untreated syphilis in African Americans

● Participants: 399 African Americans with syphilis and 201 in control group

● Lasted: 1932-1972 (40 years) - Segregation- Jim Crow Laws

Ch 1: Introduction ● July 27, 1972: Mr. Charlie Pollard was a

participant with Fred D. Grey representing him in Pollard v. United States of America

● Penicillin: Discovered by Alexander Fleming in 1928, but not used until 1942 to treat bacterial infections

● “Outlined what could only be viewed as an alarming atrocity and yet another example of racial injustices perpetrated by the government in segregated Alabama” (pg. 24). Fred D. Grey

Ch 2: Macon County, Alabama ● Macon County population (1930) : 27,103

w/ 22,320 African American ● Segregation: 1932-1954 ● “Two generations... No personal

knowledge of “colored” water fountains, Jim Crow public accommodations, racial restrictions on voting and jury service, and so forth” (pg 26).

● “It was and is a place of great beauty, of extreme wealth and grinding poverty, of pain and joy” (pg. 27).

Ch 2 cont: Tuskegee University ● Professor George Washington

Carver: Develop many uses of Peanuts and Sweet Potatoes

● Historically Black College ● Julius Rosenwald Fund: Created

many black schools in Rural South ● “ I am sure that only a handful of

the 623 participants… had ever been treated by a physician” (pg. 36).

Ch 3: Origins of the Study● “The study began as a project of the Julius Rosenwald Fund, which took

an active interest in both education and health care for African Americans in the Rural South” (pg. 39).

● “All the ingredient were there… High African Americans population...Highest incidence of syphilis...virtually none had been treated” (pg42).

● “Clark’s original design was for an observation project of only six to eight months” (pg. 43)

● “Local, state, and national medical establishments...not treat syphilis...observe the effect of untreated syphilis… it was to continue for forty years” (pg47).

Ch 4. The Study, 1932-1972Phase One: October 1932 to June 1933

● Study group ○ 4,400 men and women over 18 were

tested, 990 tested positive.○ End Result: of 1,782 men 25 and older, 472

tested positive, 408 were selected● Study procedures

○ “Bad blood” ○ Physicals: second test○ “Vonderlehr’s Golden Needle Treatment”

Ch 4 Cont’dPhase Two June 1933-1965

● Study extended, two changes occurred○ Control group of non-syphilitics (200)○ Older participants were to be followed until

death for autopsies ● Autopsies and physician assessments

○ 20 year follow up: 1 refusal, 145 obtained● Incentives

○ Burial Insurance scheme (1935), Nurse Rivers○ 25 year certificate= $25, medicine

● Dr. Wenger’s speech (1950)○ Moral and ethical concern ○ Refusal of penicillin treatment. Ex: Herman○ Shorten lives by 20%

Ch 4 Cont’dThe Final Phase: 1965 to 1972

● Beginning of the end of the Tuskegee Syphilis Study (1965)○ Brown’s Decision destroyed “separate but equal” (1955)○ Rosa Park’s being arrested (1955)○ Mitchell v. Wright -> Voting Rights Act (1965)

● Municipal Election declared African American can’t vote○ Stop trading with White merchants○ Fred filed Gomillion v. Lightfoot & Lee v. Macon County

Board of Education● Uneasiness of racial attitudes and civil rights activities

○ Discussion by Dr. Sencer: Should the study by terminated? ○ PHS received help from Dr. Meyers and his staff in Alabama○ Build relationship with Macon County Medical Society &

Andrew Memorial Hospital, Nurse Elizabeth is hired (1970), study continues

Chapter 5: The Study Revealed● Surviving participants didn't know they were apart

of a study.○ Wasn't until 1972 through News outlets that

participants learned that they were apart of the study.-

● Some doctors were at fault.○ Some doctors knew about the study through its

whole reign.-● The secret of the Experiment was Very Kept.

○ Gray, though very knowledgeable about concerns in the country (including healthcare) had no knowledge either.-■ Gomillion v. Lightfoot (1957)

Ch 5 Cont’dHow Did the press find out about the study?

● Peter Buxtun ● Venereal disease interviewer-under public health services-

○ He was the first ethical sensitive person to know about the study and Voice the wrongdoings about the Study/experiment.■ I was shocked by statements such as “An Important phase of the study has

been the performance of Autopsies”...”...morality and morbidity are considered higher among untreated syphilitics”

● Dr. Irwin J. Schatz○ Sent a letter to the public Health service officials upon learning

about the experiment, with no response.

Ch 5 Cont’d● Continues Investigation

○ Buxton worried that the disclosure of this gruesome study would jeopardize future Congressional funding of other PHS projects.

○ His Superiors were very shocked at the statement that he had made and warned him that he could be fired if he proceeded with further investigation.-

○ Though they were afraid, they still forwarded his report to the CDC (center for disease control)-

● Dr. William J. Brown○ On November 9, 1966 Buxtun wrote to him and The Chief of The VDD (Venereal Disease

Division)○ Called him out about the study in his letter.-○ Addressed that the participants were given placebos when they were told that they were

being treated.● Questions were raised: 1.)Was this performed to examine autopsies from syphilitic patients? (meaning

they endured purposely) 2.)Were the men fully treated? 3.) Were they told about the study? 4.) is the study continuing?

Ch 5 Cont’dConference held in Atlanta (Center for disease control)

● Present was; Dr. Buxton, Dr. John Cutler, Dr. James Spencer and others…● Buxtun felt the conference was meaningless and it didn't get anywhere.

○ He feared he would be fired, but he was not.○ Later in 1968 Buxtun wrote Dr. Brown again-

● The study continued● 1972 Buxtun leaked the story to the San Francisco Associated Press● News got out around Atlanta and San Francisco and eventually around the world.

Chapter 6: The Lawsuit● Background

○ Fred D. Gray represented the plaintiffs in this class-action lawsuit against the government from when it was brought to his attention in 1972 and up until its settlement in 1975.

○ Filed on July 24, 1973 under Pollard v. U.S. Public Health Service- Charlie Pollard, a surviving victim of the study, led a group of survivors and sought

representation from Gray against those who were legally responsible for operating and maintaining the experiment.

● Initial Investigation○ The government violated the constitutional rights of the participants, knew that the

participants had syphilis, and did not treat them.○ The Public Health Service did not tell the participants that they were in a study, that they had

syphilis, and that there was treatment available for syphilis. In addition, they also misled participants into believing that they were getting free medical treatment.

○ The study had no rules and regulations, and was racially motivated and discriminated against African Americans.

Chapter 6: The Lawsuit (cont.)● The Allegations

○ The participants were poor, rural African Americans who did not know that they were part of and being used in an experiment, and were not told they had syphilis. ■ However, participants alleged that they were injured both physically and mentally.

○ The study was announced under the guise of being a new health care program where notices were only circulated throughout African American communities.

○ The government violated the “rights guaranteed under the Fifth, Ninth, Thirteenth, and Fourteenth Amendments to the Constitution of the United States, and Article I, Section VI of the Alabama Constitution of 1901” (pg. 88).

● Defendant’s Responses to Allegations○ Defendant Dr. R. L. Myers, State Health Officer, denied the basic allegations and explained

“that there were insufficient information to determine whether or not all of the subjects were African American, poor, or uneducated” (pg. 89).

○ The United States government denied all allegations; however, they did admit that the participants were African American and the study was conducted by the federal government.

Chapter 6: The Lawsuit (cont.)● Challenges Encountered

○ During discovery, when asked to bring forth documents during the early years of the study, the government claimed that there were “no records available as far as the government knew” (pg. 90).■ A medical researcher, James H. Jones, had

found early records of the study (1931-1939) in the National Archives.

○ Personal representatives were the only ones who had the legal right to bring forth action on behalf of each of the deceased participants.

Chapter 6: The Lawsuit (cont.)● The Evidence

○ Public Health Service personnel prevented participants from receiving treatment at other public health clinics.■ The defendants visited local doctors and gave them a list of the participants. The

local doctors cooperated and agreed not to treat any of the patients for syphilis.■ In 1941, they stopped local draft boards from calling the participants for wartime

physicals.○ Doctors and nurses gave placebos and painkillers to participants as an incentive to stay in

the program. In addition, they sent annual follow ups to participants.■ Participants were told it was a form of treatment.

○ Doctors reported that the participants with syphilis “were dying faster, and experiencing higher rates of heart morbidity than were the controls” (pg. 93).

Chapter 6: The Lawsuit (cont.)● The Settlement

○ Settled in 1975 for ten million dollars

○ Financial compensation for each of the living

participants and the heirs of the deceased

participants

○ Continue the health care program for the

living participants and widows and children of

any of the participants

Chapter 7: An Abrupt End to the Study● Assistant Secretary of HEW, Dr. Merlin K. Duval,

“announced [on August 24, 1972] that an

investigation would be conducted by the

Tuskegee Syphilis Study Ad Hoc Panel” (pg. 101).

● “On November 16, 1972, HEW Assistant Secretary

Duval issued an administrative order ending the

Study” (pg. 101).

Chapter 8: Aftermath

● Tuskegee Syphilis Study ended in 1972○ Lawsuit settled in 1975

● Experiment was seen as a case of racial discrimination○ Over 623 men involved in the Experiment

● Booked published in 1998○ At this time seven of the men are still living

● Miss Evers’ boys○ Film was a dramatization of the study and upset many

Chapter 8: Aftermath (Appendix B)● April 8, 1997, Press Conference - An apology is being held with the President from the government , at

Shiloh Baptist Church.● Statement of Fred D. Gray- Men were mislead into participating in a study “were being treated for

whatever their ailments were, even though they were not told their ailment” (pg. 149)

Chapter 8: Aftermath (Appendix B) Cont.

● Fred D. Gray

- Filed a lawsuit in 1972, he represented these participants. - Government agreed to pay about seven million dollars to the living

participants and “the heirs of the deceased participant's” (pg. 149).- Congress passed laws which prohibited similar occurrences to what

occurred in the Tuskegee Syphilis Study.

Ch 9: The Presidential Apology ● On May 16, 1997, President

Clinton said,

“What was done cannot be undone. But we can end the silence. We can

stop turning our heads away. We can look 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.”

Chapter 10: The Legacy● The truth comes out-

○ President and Vice made speech issuing apology in 1997 exposing truths as well○ Vice president Gore stated: “the experiment was one of the most shameful chapters in the

history of American Medicine”● The experiment put a scare on Americans leading them to think twice about things such

as:■ Donating blood■ Being organ donors■ Taking their children to get vaccinated etc.

● President directly blamed the government for their wrongdoings● President also voiced his concerns, stating how these men in the study were betrayed.

Ch 10 Cont’d● Mr Shaw felt as though a weight was lifted after

Hearing what the President sad to say.-

- The Apology ceremony put into perspective just how important and severe this case was.

- Persons involved received medical care, burial expenses and financial remuneration

- This placed case emphasis on the proper way to conduct studies that involved humans pathing the way for further ethics review.

Chapter 11: Beyond Tuskegee● Trust to be restored● After the Apology Clinton tried to find a way to “best involve the

community, especially minorities, in research and healthcare”-● Still occurring in African American Community● Wrongful science experiments were still happening , in 1998 there was a

forum in which Gray was invited.● Community health activist Loretta Jones spoke to an event in LA in 1989

where 1,500 infants (black and brown) were experimented on with vaccines. Also possible AIDS vaccines to African americans because of their supposed “high risk”

Chapter 12: Epilogue “ I wrote this book primarily to tell the real story of the tuskegee Syphilis Study from

my perspective as a veteran civil rights Lawyer who was the Attorney for

participants….. Telling the real story”

(p.141)

Thank YouAny Questions?