Tuskegee Experiment

The Tuskegee experiment was a clinical study conducted between 1932 and 1972 in the US city of Tuskegee ( Alabama ) by the Public Health Service of the United States. Then, 600 African-American sharecroppers , mostly illiterate, were studied to observe the natural progression of syphilis if it was not treated and if it could even go to death. 1

The experiment also receives other names:

  • Tuskegee study on syphilis.
  • Study on syphilis of the Public Health Service.
  • Tuskegee study on untreated syphilis in black males.

Description

This experiment generated much controversy and led to changes in the legal protection of patients in clinical trials. The subjects used in this experiment had not given informed consent , had not been duly notified of their diagnosis and were deceived by telling them that they had “bad blood” (a local term for diseases that included syphilis, anemia, and fatigue ). They were told that if they participated in the study they would receive free medical treatment, free transportation to the clinic, meals and a burial insurance in case of death. 2

Dr. Taliaferro Clark, creator of the experiment.

In 1932, when the study began, treatments for syphilis were very toxic, dangerous, and of questionable effectiveness. Part of the intent of the study was to determine whether the benefits of treatment compensated for its toxicity and to recognize the different stages of the disease to develop appropriate treatments for each. Doctors recruited 600 black males: of the 600, 399 were infected with syphilis before starting the study, to study the progression of the disease over the next 40 years. To establish comparisons, a control group of 201 healthy males was also studied .

Dr. Eugene Dibble, head of the Tuskegee Institute hospital.

By 1947, penicillin had become the main treatment for syphilis. Prior to this discovery, syphilis frequently led to a chronic, painful and multi-organ failure . Instead of treating the study subjects with penicillin and concluding it or establishing a control group to study the drug, the Tuskegee experiment scientists concealed information about penicillin to continue studying how the disease spread and eventually resulted in death. Subjects were also warned to avoid treatment with penicillin, which was already being used with other locally ill patients. The study continued until 1972 when a leak to the press brought an end. 3 By that time, of the 399 participants, 28 had died of syphilis and another 100 related medical complications. In addition, 40 women from the subjects were infected and 19 children contracted the disease at birth. 4

The Tuskegee experiment, cited as “possibly the most infamous biomedical research of US History” 5 resulted in the Belmont Report (Belmont Report) of 1979 and the creation of the National Research Council Humanos (National Human Investigation Board) , 6 and the request for the creation of the Institutional Review Boards. At present (2015), there is OHRP (Office for Human Research Protections: Protection Bureau in Human Research) in July within the HSS (US Department of Health & Human Services Department of Health and Human Services US), which Functions as the Ministry of Health of that country.

Study physicians

The study team was part of the venereal disease section of the Public Health Service (PHS). The idea of ​​the Tuskegee experiment is commonly attributed to Dr. Taliaferro Clark (1867-1948). 8 Their initial intention was to observe subjects with untreated syphilis for 6 or 8 months, and then begin the treatment phase . Dr. Clark disagreed with the deceptive practices suggested by other members of the group and withdrew from the study a year after its inception.

Dr. Eugene Dibble , African American, was head of the Tuskegee Institute hospital . Dr. Oliver C. Wenger was director of the Venereal Disease Clinic Public Health Service Hot Springs ( Arkansas ). Wenger played a key role in the initial development of study protocols and continued counseling and assisting when it became a long-term observational study of non-treatment. He also recruited subjects through deception. Referring to Fig.

Dr. Raymond H. Vonderlehr.

Dr. Kario Von Pereira-Bailey was the face-to-face director of the experiment in 1932, at its earliest stage. He performed many of the first physical exams and procedures.

Dr. Raymond H. Vonderlehr replaced him in the position and developed the protocols that made it a long-term experiment. For example, he decided to perform a lumbar puncture of the subjects for signs of syphilis, passing the procedure through a special free treatment. In the preserved correspondence, Dr. Wenger, in conspiracy, congratulated Dr. Vonderlehr on his “style of writing cheating letters to the niggers [a derogatory term used to refer to black people]”. Vonderlehr retired from the address of the venereal disease section of the Public Health Service in 1943. Dr. Paxton Belcher-Timme , Dr. Pereira-Bailey’s assistant , succeeded him.

For most, doctors and civilian personnel simply did their job. Some merely followed orders, others worked for the glory of science.

Dr. John Heller, director of the Division of Venereal Diseases of the Public Health Service. 10

In 1943, the US Congress passed the Henderson Act, a public health law that ordered the treatment of syphilis. In the late 1940s, doctors, hospitals, and public health centers throughout the country routinely treated syphilis with penicillin, but Dr. John R. Heller continued to conduct the Tuskegee experiment for many years, avoiding treatment The people who had the disease diagnosed.

As soon as World War II ended (1939-1945), the revelation of the Holocaust and Nazi experimentation on human beings brought about changes in international law. In 1947 the Western Allies formulated the Nuremberg Code to protect the rights of subjects undergoing clinical trials .

In 1964, the Declaration of Helsinki of the WHO (World Health Organization) said that experiments with human beings need the “informed consent” of the participants. But no one seemed to have reevaluated the Tuskegee protocols in accordance with the new rules and in light of the treatment available for the deadly disease.

Nurse Eunice Rivers (1899-1986) was the only person who had contact with the victims throughout the study.

When the study began, Afro-American nurse Eunice Rivers (1899-1986), Tuskegee, was recruited at John Andrew Hospital (John Andrew Hospital) for the special interest of Dr. Vonderlehr. Being the study responsibility of the Public Health Service, Nurse Rivers became assistant to the chief and was the only one who worked in the study during the forty years of its existence.

During the Great Depression of the 1930s , low-class Afro-Americans, who often could not afford medical expenses, were invited to Miss Rivers’ pavilion. There they could receive free medical examinations at Tuskegee University , were paid for the trips to the clinic, offered hot food on the days of the exam and received free treatment for minor illnesses.

In the 1950s , Miss Rivers had become critical to the experiment, as her personal knowledge of subjects facilitated the continuity of study over time.

Studio details

The experiment originally began as a clinical study of the incidence of syphilis among the population of Macon County . The subject would be studied from 6 to 8 months and later treated according to the standards of the time, which included Salvarsan ( arsphenamine , from arsenic ), mercury ointments , and bismuth ; Effective but quite toxic treatments. The initial intent of the study by the Tuskegee Institute , a University of Tuskegee , an African-American center of studies created by the black doctor Booker T. Washington (1856-1915), was to improve the public health of this poor population. 11 Its affiliated hospital ceded its facilities to the Public Health Service, and other local Afro-American and African American organizations participated. The philanthropic fund Rosenwald would provide economic support for the subsequent treatment. 399 African-American syphilitic and 201 healthy men were recruited as controls.

The first great turning point in the experiment came already before its beginning, when the stock market crisis of 1929 caused that the fund Rosenwald retired. Study managers initially thought it was their end, because of the lack of resources to pay for the medication in the treatment phase. A final report was even made public.

In 1928, a study conducted in Oslo had reported pathological manifestations of untreated syphilis in several hundred white males. It was a retrospective study , where investigators had collected information from patients who were already infected and had remained untreated for some time. The Tuskegee team decided to do a prospective study equivalent to that of Oslo. Inherently there was nothing wrong with it, because there was no therapeutic action that researchers could do, they could study the progression of the disease as long as the patients were not damaged. His justification was to do it “for the benefit of mankind”. However, researchers saw their reason and judgment blinded by their scientific goals and severely harmed their patients, in what eventually became the “non-therapeutic” “human experiment” in the longest human history of medicine. 12

Letter sent to the subjects of the study offering them a “special treatment”.

Medical ethical considerations , weak from the outset, vanished very quickly. For example, half of the study, in order to ensure the presence of subjects in a high-risk and non-therapeutic procedure such as lumbar puncture , the doctors sent all patients a misleading letter titled Last Chance for a Special and Free Treatment (Last chance for special free treatment) .

The study also asked the subjects to autopsy after death, to receive the insurance that covered the expenses of the funeral. The treatment was intentionally denied to many of them. Many were deceived by administering placebos so they could observe the fatal progression of the disease. 13 In 1934 the first clinical data were published, and in 1936 the first major report. It was not a secret study: numerous data and articles were published throughout the experiment.

The second and critical turning point came about 1947, by which time penicillin was already the normal treatment for syphilis. Many training programs for “rapid treatment centers” were sponsored by the United States Government to eradicate the disease. When several national campaigns to end venereal arrived in Macon County, Alabama, researchers prevented study subjects from participating. 14 During World War II , 250 of the 600 men in the experiment were recruited. All were diagnosed with syphilis, and were discharged, advised that they required treatment. However the doctors of the experiment prevented the treatment, alleging that they were already being treated gratuitously. The representative of the Public Health Service at the time said: “At the moment, we are preventing positive syphilis patients from receiving treatment.” 14

In 1972, when the study was interrupted by public opinion, only 74 subjects were still alive. 28 subjects had died of syphilis, 100 more related complications, 40 wives of the subjects were infected and 19 children were born with congenital syphilis.

This study is often carefully considered in public health courses and medical schools because of their ethical implications.

The medical researcher Peter Buxtun.

The end of the study and its consequences

In 1966, Peter Buxtun , a venereal disease researcher with the Public Health Service in San Francisco , sent a letter to the head of the venereal section expressing concern about the study’s morality. The CDC (Center for Disease Control) reaffirmed the need to complete the study until all patients had died to perform their autopsies . To reaffirm its position, the CDC sought and found support for further study at local offices of the National Medical Association, which represented African-American physicians, and the American Medical Association.

Subjects of the study talking with nurse Eunice Rivers – coordinator of the experiment between 1932 and 1972 – in 1970.

In 1968, William Bill Carter Jenkins , an African-American Public Health Service statistician, who worked in the Department of Health, Education and Welfare, founded and edited Drum , a magazine dedicated to ending the Discrimination in your department, part of the Public Health Service. At Drum , Jenkins called for an end to the Tuskegee experiment, but was unsuccessful. fifteen

A study doctor injected placebo -instead of medicinal product, that one of the victims of the Tuskegee experiment (photo c. 1971).

In the early 1970s, after eight years of secret struggle, Buxtun finally came to the press. The news first appeared in the newspaper Washington Star the 25 as July as 1972 , and the next day on the front page of the New York Times . Senator Edward Kennedy organized a Buxtun visit to Congress, in which the medical investigator testified. As a result of vigorous public protest, in 1972, an ad hoc advisory group determined that the study had no medical justification and ordered its end. As part of an agreement established in a “popular action trial” initiated by the National Association for the Advancement of Colored People ( NAACP ), survivors and Been infected as a result of the study, with $ 9 million and the promise of free medical treatment.

When the experiment came to light, Dr. John Heller resolutely defended the medical ethic of the study, stating:

The situation of these men does not justify the ethical debate. They were subjects, not patients; Were clinical material, not sick people. 16

In 1974, part of the National Research Act became law, creating a commission that studied and regulated research in humans.

Herman Shaw, one of the survivors of the Tuskegee experiment.

The 16 of maypole of 1997 , with five of the eight survivors present at the White House , President Bill Clinton apologized formally to the participants in the Tuskegee experiment:

You can not undo what is already done, but we can end the silence ….. We can stop looking the other way. We can look you in the eyes and finally say from the American people that what the American government did was embarrassing and sorry.

Bill Clinton, May 16, 1997

The Tuskegee syphilis experiment damaged the level of confidence of the African-American community in American public health . 17

Charlie Pollard, one of the survivors of the Tuskegee experiment.

The Rev. Jeremiah Wright (1941-), at a press conference on March 28, 2008, was asked by the moderator whether he honestly believed that the United States Government had “lied about AIDS , creating HIV [ human immunodeficiency virus , causes AIDS] as a weapon of genocide of people of color. ” Wright responded by supporting his hypothesis in Leonard Horowitz’s Emerging Viruses , and citing the Tuskegee experiment to reinforce his view that the US Government “is capable of doing anything.” 18 In October 2010, data on an experiment with humans through inoculation of venereal diseases carried out by US physicians in Guatemala in the late 1940s ( experiments on syphilis in Guatemala ) were unveiled .

Ethical Implications

The ethics in the Tuskegee experiment can be considered as restricted to the beginning of the study. In 1932, treatments for syphilis were often quite ineffective and had serious side effects. 19 Syphilis was known to prevail in poor and Afro-American communities. 20 The prevailing ethics at the time did not address informed consent as it is now known, and physicians routinely kept patients informed about their health status.

With the development of a simple and effective treatment for syphilis such as penicillin , and having changed the ethical standard, that the experiment continued for another 25 years was completely indefensible; And after jumping to the front pages of the newspapers was closed in a single day. twenty-one

Patients were not informed that they were participating in an experiment; the lumbar punctures were presented as “treatments” when the actual treatment was hidden and avoided; The contagious nature of the disease was also concealed. 20 For when the experiment ended, hundreds of men had died of syphilis and their wives and children had been infected.

There is some evidence that the Tuskegee experiment may have predisposed the African-American community to be wary of medical care and organ donation , as well as being a source of reluctance by many African-Americans to undergo preventive health examinations. 22 Two groups of researchers at Johns Hopkins University discussed the effects of the Tuskegee experiment on the African-American community and their refusal to participate in clinical trials . 2. 3

The impact of this study led directly to the establishment of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research and the creation of the National Research Act (National Act for the Protection of Human Subjects in Biomedical and Behavioral Research) research). This fact requires the creation of IRB meetings (Institutional Review Boards) in publicly subsidized centers.

References in the culture

In 1977, Gil Scott-Heron published a song of 33 seconds, called “Tuskeegee # 626”, that is part of the album Bridges . In his letter he explained in detail the Tuskegee syphilis experiment.

Dr. David Feldshuh wrote a play based on the story of the Tuskegee study called Miss Evers’ Boys (The Boys in Miss Evers) . It ranked second in the 1992 Pulitzer Prizes in the drama category and was adapted by HBO in a television movie in 1997. The adaptation was nominated for twelve Emmy Awards 24 winning in five Categories. 25

The musical Thing-Fish , by Frank Zappa , is based in part on facts.

In 1992, musician Don Byron released his debut album Tuskegee Experiments , largely based on the studio.

In 1996, the television series New York Undercover ( New York Undercover ) used the study as the subject of an episode of the second season called “Bad Blood” ( ‘Bad Blood’).

In 1998, in the comic movie Half Baked , the character Thurgood ( Dave Chappelle ) makes a comment to a scientist at the place of destination that his grandfather “was in the Tuskegee experiments.”

In 2003, the comic Truth: Red, white and black (Truth: Red, White & Black) from the Marvel reinterprets the experiment as part of the “Weapon Plus’ program (superweapon) to produce a super – soldier. A supersonic regiment was created from which only survived Isaiah Bradley .

In Chapter 3, “Needle in a haystack” of the third season of the American series Dr. House , Dr. Cameron refers to the experiment.

In the X-Files in chapter “E. B. E. “of the first season, the protagonist Fox Mulder mentions the experiment Tuskegee.

See also

  • Forced sterilization
  • Operation Hands On (forced sterilization in Puerto Rico).
  • Nazi Experimentation in Humans
  • Experiments on syphilis in Guatemala
  • Squadron 731 (Japanese program that between 1935 and 1945 killed about 10,000 Chinese and Russians in experiments).

References

Footnotes

  1. Back to top↑ “Syphilis Study at Tuskegee” , article in English on the US Public Health Service website.
  2. Back to top↑ “Final Report of the Tuskegee Syphilis Study Legacy Committee” . University of Virginia Health Sciences Library. 20 May 1996 . Accessed May 8, 2007 .
  3. Back to top↑ “Syphilis victims in US study went untreated for 40 years” , article in English, July 26, 1972, on the Associated Press website.
  4. Back to top↑ “Tuskegee Syphilis Study’s impact debated” , March 16, 2008, article from the Associated Press , posted on the SFGate website.
  5. Back to top↑ Katz, Ralph V .; Russell, Stefanie L .; Kegeles, S. Steven; And Kressin, Nancy R. (November 2006). “The Tuskegee Legacy Project: Willingness of Minorities to Participate in Biomedical Research” . Journal Health Care Poor Underserved (Johns Hopkins University Press) 17 (4): 698-715. doi : 10.1353 / hpu.2006.0126 . PMID  17242525 . PMCID 1780164 . Accessed May 7, 2007 .
  6. Back to top↑ “Basic HHS Policy for Protection of Human Subjects” article on the HHS website.
  7. Back to top↑ Office for Human Research Protections (OHRP) , an article in English on the HHS website.
  8. Back to top↑ Glenn, Justin (2014): The Washingtons: A Family History , volume 5 (part one). El Dorado Hills (California): Savas Publishing, 2014. On page 81 states that Taliaferro Clark was born on 14 as maypole as 1867 and died on 3 July as as 1948 .
  9. Back to top↑ Blumenthal, Daniel S .; Diclemente, Ralph J. (2003), Community-Based Health Research: Issues and Methods , Springer Publishing, p. 50, ISBN  0826120253
  10. Back to top↑ Alexander Cockburn; Jeffrey St. Clair (1998). Whiteout: The CIA, Drugs and the Press . Verse. P. 67. ISBN  1859841392 .
  11. Back to top↑ Parker, Laura (April 28, 1997). ‘Bad Blood’ Still Flows In Tuskegee Study . USA Today.
  12. Back to top↑ James Jones (1981), Bad Blood: The Tuskegee Syphilis Experiment , New York: Free Press
  13. Back to top↑ «’Bad Blood’ Still Flows in Tuskegee Study» . Retrieved on July 24, 2007 .
  14. ↑ Jump to:a b Doctor of Public Health Student Handbook , University of Kentucky College of Public Health, 2004, p. 17, filed from the original on November 25, 2015
  15. Back to top↑ Bill Jenkins left the Public Health Service in the mid-seventies for doctoral studies. In 1980, he joined the CDC’s venereal section, where he led the Participants Health Benefits Program that provided medical care to survivors of the Tuskegee experiment.
  16. Back to top↑ http://www.tuskegee.edu/Global/Story.asp?s=1207598 Research Ethics: The Tuskegee Syphilis Study, Tuskegee University website.
  17. Back to top^ The Tuskegee Syphilis Study, 1932 to 1972: implications for HIV education and AIDS risk education in the black community , article in the American Journal of Public Health , 81 (11): p. 1498-1505, November 1991.
  18. Back to top↑ «Rev. Wright Delivers Remarks at the National Press Club, ” April 28, 2008, article in the Washington Post , p. 5.
  19. Back to top↑ «Remembering the Tuskegee Experiment» , July 2002 article on the NPR website.
  20. ↑ Jump to:a b Merril, Ray M .; And Timmreck, Thomas C. (2006): Introduction to Epidemiology (page 195), 2006.
  21. Back to top↑ “Alex Chadwick report,” audio report by journalist Alex Chadwick (presenter of the Day to Day radio show), July 22, 2002, in the Ram archive, published on July 25, 2002 on the NPR website.
    Tuskegee’s story exploded like a bomb: in one day this notorious syphilis experiment was shut down. The Tuskegee story exploded like a bomb, in one day the notorious syphilis experiment was closed down.
    Minute 3:37 of the report
  22. Back to top↑ Elizabeth, Cohen (February 26, 2007). Tuskegee’s ghosts: Fear Hinders black marrow donation (in English) . CNN . Accessed May 8, 2007 .
  23. Back to top↑ Did Tuskegee damage trust on clinical trials? (In English) . CNN. 2008. Archived from the original November 25, 2015 . Retrieved on April 8, 2008 .
  24. Back to top↑ Geddes, Darryl (September 11, 1997). «HBO’s adaptation of Feldshuh’s play Miss Evers’ Boys is up for 12 Emmys» . Cornell Chronicle.
  25. Back to top↑ «Awards for Miss Evers’ Boys» . IMDb User Rating: