the story

the study begins

Voices For Our Fathers Legacy Foundation is dedicated to preserving history and the legacies of the 625 African American men victimized and unethically treated in the United States Public Health Service (USPHS) Study of Untreated Syphilis in the Negro Male at Tuskegee and Macon County, Alabama, from 1932 - 1972. In the annals of United States (U.S.) medical history, this study stands out as the most notorious medical research scandal for its profound impact on the ethics of medical research. It is the longest lasting non-therapeutic study in U.S. medical history.

Originally known as the “Tuskegee Study of Untreated Syphilis in the Negro Male” the USPHS study, working with the Tuskegee Institute, began in 1932 in Tuskegee, Alabama, which then had the highest syphilis rate in the nation, according to some reports at the time. The study was designed to chart the natural progression of untreated syphilis and determine through autopsies what specific damage untreated syphilis does to the human body in the African American male. The USPHS study, conducted without the patients’ informed consent, initially enlisted 600 African American men -- 399 with syphilis and 201 who did not have the disease. Researchers told the men they were being treated for “bad blood” -- a local term used to describe several ailments including syphilis, anemia and fatigue. Each man was promised free medical exams, free meals and burial insurance in exchange for their participation in the study. Though approximately two-thirds of the men tested positive for syphilis, they were never informed of their status or told the true purpose of the study. Although originally projected to last 6 months, the study went on for 40 years.

what went wrong

During the 1930s, treatment for syphilis consisted of doses of arsenic and mercury. However, in 1947 penicillin became the standard syphilis treatment, leading to the USPHS opening Rapid Treatment Centers around the country. Yet, despite these medical advances, federal health officials ordered the drugs be withheld from these study participants. This study became an observation of how the disease ravaged the body as these men who were never treated experienced blindness or cognitive decline or other severe complications.

In 1972, Peter Buxtun, a former USPHS employee and ultimate whistleblower, leaked information of this unethical study to The Associated Press, sparking a public outcry that led to the Assistant Secretary for Health and Scientific Affairs to appoint an Ad Hoc Advisory Panel to review the study. The panel had nine members from the fields of medicine, law, religion, labor, education, health administration, and public affairs. The panel found that the men had agreed freely to be examined and treated; however, there was no evidence of researchers informing them of the true purpose of the study. In fact, the men had been misled and not given all the facts required to provide informed consent. The men were never given adequate treatment for their disease although penicillin became the drug of choice for syphilis in 1947. The advisory panel found nothing to show that subjects were ever given the choice of quitting the study, even when the new highly-effective treatment of penicillin became widely used throughout the United States.

the study ends AND reparation begins

The advisory panel concluded that the USPHS Study of Untreated Syphilis in the Negro Male at Tuskegee and Macon County, Alabama, from 1932 - 1972 was “ethically unjustified” – the knowledge gained was sparse when compared to the risks the study posed for its subjects. In October 1972, the panel advised immediately terminating the study. One month later, the Assistant Secretary for Health and Scientific Affairs announced the end of the USPHS Study.

In the summer of 1973, a class-action lawsuit was filed on behalf of the study participants and their families. In 1974, a $10 million out-of-court settlement was reached and, as part of the settlement, the U.S. government promised to give lifetime medical benefits and burial services to all living participants. The Tuskegee Health Benefit Program (THBP) was established to provide these services. In 1975, wives, widows and children were added to the program. In 1995, the program was expanded to include health as well as medical benefits. The Centers for Disease Control and Prevention (CDC) was given responsibility for the program, where it remains to this day in the National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention.

The last study participant died in January 2004. The last widow receiving THBP benefits died in January 2009. There are currently 12 children receiving medical and health benefits.

LASTING EFFECTS

The USPHS Study of Untreated Syphilis in the Negro Male at Tuskegee and Macon County has had a lasting impact on the field of medical research, leading to significant changes in U.S. law and ethical standards for human subject research. The National Research Act, which was passed in 1974, included the creation of federal rules to protect human participants in research.  It also led to the establishment of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research to identify standards to guide human research. The Institutional Review Boards that now review and approve research involving human subjects were also established. It led to the Blemont Report and strengthened informed consent. As a result, informed consent became a fundamental requirement in all research studies.

Despite these changes, the legacy of the study continues to reverberate in many communities, fostering an ongoing distrust of the medical establishment and serving as a powerful reminder of the vital importance of maintaining the highest ethical standards to protect human subjects.


CDC AND PREVENTION study timeline


 

1895
Booker T. Washington at the Atlanta Cotton Exposition, outlines his dream for black economic development and gains support of northern philanthropists, including Julius Rosenwald (President of Sears, Roebuck and Company).

1900
Tuskegee educational experiment gains widespread support. Rosenwald Fund provides monies to develop schools, factories, businesses, and agriculture.

1915
Booker T. Washington dies;
Robert Moton continues work.

1926
Health is seen as inhibiting development and major health initiative is started. Syphilis is seen as major health problem. Prevalence of 35 percent observed in reproductive age population.

1929
Aggressive treatment approach initiated with mercury and bismuth. Cure rate is less than 30 percent; treatment requires months and side effects are toxic, sometimes fatal.

“Wall Street Crash”
economic depression begins.

1931
Rosenwald Fund cuts support to development projects. Clark and Vondelehr decide to follow men left untreated due to lack of funds in order to show need for treatment program.

1932
Follow-up effort organized into study of 399 men with syphilis and 201 without. The men would be given periodic physical assessments and told they were being treated. Moton agrees to support study if “Tuskegee Institute gets its full share of the credit” and black professionals are involved (Dr. Dibble and Nurse Rivers are assigned to study).

1934
First papers suggest health effects of untreated syphilis.  

1936
Major paper published. Study criticized because it is not known if men are being treated. Local physicians asked to assist with study and not to treat men. Decision was made to follow the men until death.

1940
Efforts made to hinder men from getting treatment ordered under the military
draft effort.

1945
Penicillin accepted as treatment of choice for syphilis.

1947
USPHS establishes “Rapid Treatment Centers” to treat syphilis; men in study are not treated, but syphilis declines.

1962
Beginning in 1947, 127 black medical students are rotated through unit doing the study.

1968
Concern raised about ethics of study by Peter Buxtun and others.

1969
CDC reaffirms need for study and gains local medical societies’ support (AMA and NMA chapters officially support continuation of study).

1972
First news articles condemn studies.

Study ends.

1973
Congress holds hearings and a class-action lawsuit is filed on behalf of the
study participants.

1974
A $10 million out-of-court settlement is reached. The U.S. government also promised to give lifetime medical benefits and burial services to all living participants; the Tuskegee Health Benefit Program (THBP) was established to provide
these services.

1975
Wives, widows and children were added to the program.

1995
The program was expanded to include health as well as medical benefits.

1997
On May 16th President Clinton apologizes on behalf of the Nation.

1999
Tuskegee University National Center for Bioethics in Research and Health Care hosts 1st Annual Commemoration of the Presidential Apology.

2001
President’s Council on Bioethics was established.

2004
CDC funds 10 million dollar cooperative agreement to continue work at Tuskegee University National Center for Bioethics in Research and Health Care.

2004
The last United States Public Health Service Study of Untreated Syphilis in the Negro Male at Tuskegee and Macon County, Alabama 1932 - 1972 participant passes away on January 16.

2006
Tuskegee University holds formal opening of Bioethics Center.

2007
CDC hosts Commemorating and Transforming the Legacy of the United States Public Health Service (USPHS) Syphilis Study at Tuskegee.

2009
The last widow receiving THBP benefits passes away on January 27.

2010
The children and their descendants unite to form The Voices for Our Fathers
Legacy Foundation.

 

the 625 men

Adair, Green
Adams, Coton
Adams, James
Adams, Louis
Albert, Prince
Alexander, Ben
Alexander, Joe
Alexander, Marion
Allen, Jefferson
Allen, Sam
Allen, Seldon
Anderson, George
Anderson, George T.
Anthony, Will
Askew, Seaborn
Austin, Alfred
Austin, Dean
Austin, George
Austin, Hyth
Austin, Nelson
Austin, Wiley


Baker, George
Banks, Early
Banks, Jack
Barrow, David
Barrow, Seth
Bascom, Bishop
Battle, Enoch
Battle, Lee
Beasley, Nathaniel
Beasley, Robert
Berry, John
Berry, Lomie
Bessick, Ed
Bessick, Ernest    
Black, Ishman
Black, Jim
Black, Wiley
Blackburn, Will
Blackman, Primus
Blackman, Tommie Lee
Bledsoe, Pustell
Borum, Muncie
Boyd, Grant
Boyd, Jimmie
Boyd, Richard Bernard
Boyd, Tobe
Brooks, Eli
Brown, Bailey
Brown, Doll
Brown, John C.
Brown, K. L
Brown, Logan
Brown, Riley
Brown, Vance
Bryant, J. R.
Bryant, Willie
Bryant, Winfield
Buchanan, Ben
Buchanan, Charlie
Buchanan, Charlie
Buchanan, Columbus
Buchanan Gene
Buchanan, John
Buchanan, Sol
Buchanan, Wash
Buford, James
Burton, William E.
Butler, Eli
Byrd, Sam


CALDWELL, WILLIAM
CALHOUN, FORNEY
CAMPBELL, ALFRED
Campbell, Charlie
Campbell, Ishmael
Campbell, Jack
Campbell, Judge
Campbell, Will
Carlisle, Robert
Carmichel, Gus
Carr, Jim
Caston, Eugene
Chambliss, Henry
Chambliss, Jerry
Chambliss, Pollard
Chambliss, William
Chappel, Hillard
Chappel, Seaborn
Charlestom, Rufus
Chatman, George
Cheeks, John
Chisholm, Ben
Chisholm, Ed
Clabon, James
Clark, Joshua
Clark, Mose
Clements, Ludie
Cole, Allen
Coleman, Samuel
Collier, Isaac
Collins, Algie
Collins, Jim
Collins, John
Collins, Julius
Collice, Relice
Collins, Willie
Collis, Dan
Collis, Sylvester
Comer, Ben
Cooper, Amos
Cooper, Frank
Cooper, Gentry
Cox, Fletcher
Cox, Jeff
Cox, Redonia
Cox, Tom
Crawford, George
Crawford, Jimmie Lee
Crawford, John
Crawford, Logan
Crawford, Wash
Crawley, James
Crayton, Ernest
Crayton, Lonzie C.


Daggett, Zettie
Daniel, Albert
Daniel, Clark
Daniel, John Wesley
Daniel, Mac
Darkey, Floyd
Davis, Anthony
Davis, Bonnie
Davis, Elbert
Davis, Henry
Davis, Mariman
Davis, Martin
Day, Frank M.
Demps, Benjamin
Dennis, Nat
Dixson, Frank
Donar, Sam
Doner, Mose
Doner, Wilbert
Doner, Wiley
Donnar, Kelly
Dorsey, Alex
Dorsey, Jim
Dorsey, Will
Dowdell, Crawford
Downer, Willie
Dozier, Bill
Dubose, N. D.


Echols, D. C.
Echols, John
Echols, Pressley
Echols, Wade
Echols, Wiley
Echols, Willie
Ellingon, John A.
Ellington, Simuel
Epps, Henry
Evans, Ben
Evans, Henry Mark
Evans, Lemuel

Felton, Cleve
Felton, Tom
Fitzpatrick, Green
Fitzpatrick, Ned
Fitzpatrick, Thomas
Fitzpatrick, Willie
Foote, Bill
Foote, Joe
Ford, Abbie
Ford, Arthur
Ford, Peroy
Fort, Calvin
Fort, E. Gary
Fort, Jasper
Fort, Nathan
Fort, Sandy
Foster, Archie    
Foster, Eddie
Foster, Bonnie
Foster, David
Foster, Lee
Foster, Pomp
Foster, Reuben
Foster, William
Foy, Jim
Foy, Louis
Franklin, Ulysses


Gaines, Percy
Galgher, Ben
Gamble, Bob
Gamble, Elijah
Garner, Alfred W.
Gaston, Will
Gauchett, Nick
Germany, Albert
Germany, Fred
Gholston, Ben
Giles, Fred
Gilmer, Quincie
Gilmore, Doc
Glenn, Sam
Goode, John
Goodson, Grover
Gordon, Virgil
Gratehouse, Clayborn
Gratehouse, John E.
Gray, Desibe
Greathouse, Clifton
Green, Mose
Green, Walter
Green, Will
Greer, George
Griffin, Colonel
Griffin, Dave
Griffin, Miles    
Griffin, Samuel
Griffin, Willie
Griggs, Charlie
Grimes, Emmett
Grimes, James
Griscoll, Harvey
Grove, Frank


Hagins, G. B.
Hagood, Andrew
Hall, Cary
Hamilton, Columbus
Haney, Sherman
Hann, Freeman
Hardy, Albert
Harper, Clifton
Harper, Robert
Harris, Adolphus
Harris, Alonzo
Harris, Elisha
Harris, George
Harris, Jake
Harris, Jake
Harris, James
Harris, Lewis
Harris, Theodore
Harris, Will
Harris, Will Smuch
Harris, William
Harrison, Edward
Harrison, Willie
Hart, Frank
Hart, John
Hart, L. Z.
Harvey, Charlie
Harvey, Walter
Hatten, Ludie    
Hatten, Sandy
Hatten, Square
Hawkins, Henry
Henderson, Absalom
Henderson, Dick
Henderson, Hilliard
Henderson, James
Hendon, Ernest
Hendon, Louie
Henry, Johnnie
Hicks, Phil
Hicks, William
Hill, Phillip
Hoffman, Clayborn
Holiday, Joseph H.
Holmes, Zan
Howard, Carter
Howard, Tony
Hudson, John
Huffman, Bennie Lee
Huffman, Marcus
Hugley, Arthur
Hurt, Will
Hutchinson, Zack


Iszell, Minor


Jackson, David
Jackson, Fleming
Jackson, Isiah
Jackson, James
Jackson, Jim
Jackson, Martin
Jackson, Randall
Jackson, Roosevelt
Jackson, Stephie
Jackson, Tom Pony
Jackson, Tommy J.    
James, Clinton
James, George
James, Jessie
James, John C.
James, Jorden
James, Wilbert
Jenkins, Howard
Jenkins, West
Jenkins, William, Jr.
Jenkins, Willie
Jenkins, Willie
Johnson, Charles
Johnson, Feagin
Johnson, G. C.
Johnson, Jimmie
Johnson, Johnnie J.
Johnson, Price
Johnson, Simon
Johnson, Spencer
Johnson, Sylvester
Johnson, Thomas J. C.
Johnson, Tommie
Jones, Chancey
Jones, Clifford
Jones, Dan Jeff
Jones, Hayes
Jones, Henry
Jones, Major
Jones, Roosevelt
Jones, Shepherd L.
Jones, Willie
Jones, Willie Moffett
Jonking, Jim
Julkes, Albert
Julkes, Ephrom
Julkes, Warren

Kelley, John K.
Kelly, Ad
Kelly, Mitchell
Kennebrew, Usher
Key, Charlie B.
Key, George
Key, Henry
Key, Jesse
Key, Nathan
Key, Ned
Kindell, R. T.
Kitt, Edmond


Laine, Nathaniel
Lane, John Edward
Lane, Johnnie W.
Lane, Wylie
Laster, James
Laury, Andrew
Levett, William
Lewis, Peter
Lewis, Sherman
Ligon, Riley
Lockett, George
Lockwood, W. P.
Long, Sims
Long, Will
Love, Milton


Macon, V. M.
Maddox, Jesse
Mahone, Dave L.
Mahone, Fonzie
Manley, Charlie Young
Martin, Governor
Martin, Lewis
Martin, Roosevelt
Martin, Wesley
Mason, Frazier
Mays, Clabon
McGrady, Thomas
McKee, Essex
McMullen, Wash
McNeill, Willie
Menefee, Joe
Menefee, John
Miles, William
Mims, Richard
Mindingal, Samuel
Mitchell, Gary
Mitchell, John
Moore, Aaron
Moore, Abner
Moore, Alonzo
Moore, Ezekiel
Moore, Felix
Moore, Frank
Moore, Marshall
Moore, Willie Bill
Morgan, Lenza
Morrest, Hobbie
Moss, Frank
Moss, Frederick
Moss, Grant
Moss, John J.
Moss, Otis
Motley, Peter
Mott, Julius
Murphy, Dock
Murray, Albert
Multry, Jim
Myrick, I. S.


Neal, Rufus
Neal, Rubin
Norwood, Ed
Nunley, Willie


Ogletree, York    
O’Neal, Thaddeus


Pace, Eddie
Pace, Elmore
Pace, Evans
Pace, George
Pace, Henry
Pace, Lonzie
Pace, Nelse
Pace, Otis
Pace, Steve
Padgett, Whitelaw
Parker, Eli
Parker, Will
Patterson, Cleve
Paulk, Frank
Payne, Ludie
Pearsall, Pender
Pendleton, John
Pendleton, Ed D.
Phillips, Tom
Phillips, Charlie
Phillips, Ed
Phillips, John Williams
Phillips, Ned
Philpot, Prince
Philpot, Roland
Pinkard, Charlie
Pinkard, Charlie Lee
Plezes, Walter
Polk, Albert
Pollard, Charlie
Pollard, Elbert
Pollard, Lucius
Pollard, Osburn
Pollard, Vertis
Pollard, Will
Pollard, Woodie
Porch, Bertha
Potts, Jethro
Pruitt, Taylor
Pugh, Armistead
Pugh, Arthur


Randolph, Joe
Randolph, Johnnie
Randolph, Major
Randolph, Robert
Ray, George
Ray, William
Reed, Andrew
Reed, Doughlas
Reed, Fletcher
Reynolds, Charles
Reynolds, Gus
Rhone, C. H.
Ries, Clinton
Robbins, Tom
Roberson, Lige
Roberts, Bob Lee
Robinson, Albert
Robinson, Butler
Rockmore, Ben
Rogers, Henry
Rowell, Charlie
Rowell, Edmond
Rowell, Theodore
Ruff, R. L.
Rush, Lieutenant
Rush, Wash
Russell, Clarence
Russell, Jeff
Russell, Willie


Samuel, Bill
Samuel, George    
Samuel, Odell
Samuel, Tom George
Sanford, Emmet
Sanford, Fletcher

Scott, Lester
Scott, Nelson
Scott, William
Seatts, John
Shaw, Charlie
Shaw, Herman
Shelton, John
Shelton, Purvies
Shumpert, Paul
Simmons, Freddie
Simmons, John
Simpson, Bennie
Simpson, Simmie
Sinclair, Anderson
Sinclair, Oscar
Sistrunk, Henry
Slaughter, John
Smith, Cain
Smith, Dudley
Smith, Eugene
Smith, Hillard
Smith, Jimmie
Smith, Joe
Smith, John Wesley
Smith, Lieutenant
Smith, Low
Smith, Richard
Smith, Robert Harvey
Smith, Thomas Kelly
Sparks, Ed
Speed, Olin
Spivey, Jim
Stewart, Mack
Storey, Millard    
Swanson, Mark
Swanson, Please, Sr.
Swanson, Tom
Swanson, Tump
Swanson, Will Bossy
Swanson, Willie
Swift, Lawrence
Swift, Son
Swint, Andrew


Talbert, Oscar
Talley, Louis
Tarver, Eugene
Tarver, Oscar
Tate, Edward
Tate, Louis
Tate, Robert Lee
Tatum, Mayso
Tatum, Sylvester
Taylor, Richard
Taylor, Van
Taylor, Warn
Twemple, George
Theney, Bob
Thomas, Jessie
Thomas, Pat
Thompson, Peter
Thompson, Willis
Tinsley, Edison
Todd, Walter
Tolbert, George Washington
Tolbert, Jim
Tolbert, Ocie
Tramble, Willie
Trammell, Percy
Tredwell, Alf
Turk, Will
Turner, Joe
Turner, West
Turpin, Jim
Tyner, Stephen
Tyson, Freddie Lee


Upshaw, Milton


Veal, Jim
Veals, Coleman


Wade, Mitchell
Waggoner, John
Walker, Andrew
Walker, John Warren
Walls, Joe Nathan
Ware, Alex
Warren, Altlee
Warren, Ed
Warren, Sonnie
Watson, John Henry
Watson, John L.
Watt, Willie
Weathers, Alonzo
Weatherspoon, Sam
Webb, William
Welch, Dan
West, Anthony
Wheat, Tobe
Wheeler, Jake
White, Archie
White, Leonard
White, Sonny
Whitlow, Ed
Whitlow, Motelle
Williams, Albert
Williams, Andrew
Williams, Bill
Williams, Bill Henry
Williams, Bill Jesse
Willaim, Coleman
Williams, Eugene
Williams, George
Williams, Henry
Williams, James
Williams, Lewis
Williams, Mathew
Williams, Meshach
Williams, Morris
Williams, Reuben
Williams, Steve J.
Williams, Tom
Willis, J. W.
Willis, Wilbur
Wilson, Governor
Wilson, Houston
Wilson, Logan
Wilson, Roy
Wimbush, James
Wood, Charlie, Jr.
Wood, Charlie, Sr.
Wood, Grant
Wood, Louis
Woodall, Nelson
Woodall, R. D. 
Woolfolk, Jessie
Wright, Clarence
Wright, Ernest
Wright, Jim
Wright, Ludie
Wright, Rev. T. W.
Wright, Will
Wyatt, Tom


Yancey, Booker
Yarbrough, Mark
York, Harrison
Young, Jack