Content deleted Content added
m →Public trust: DAB solve |
|||
(27 intermediate revisions by 24 users not shown) | |||
Line 1:
{{Short description|1932–1972 human experiment in Alabama, United States}}
{{Sprotected|small=yes}}
{{Use mdy dates|date=
{{infobox clinical trial
| name = Tuskegee Syphilis Study
Line 7:
| image_size = 270px
| alt =
| caption = A doctor draws blood from one of the Tuskegee test subjects.
| study_type =
| dates = 1932–1972
Line 18:
}}
The '''Tuskegee Study of Untreated Syphilis in the Negro Male'''<ref name="Newkirk2016">{{Cite news |last1=Newkirk |first1=Vann R. II |title=A Generation of Bad Blood |url=https://www.theatlantic.com/politics/archive/2016/06/tuskegee-study-medical-distrust-research/487439/ |access-date=
The Public Health Service started the study in 1932 in collaboration with [[Tuskegee University]] (then the Tuskegee Institute), a [[Historically black colleges and universities|historically Black college]] in Alabama. In the study, investigators enrolled a total of 600 impoverished African-American [[sharecropper]]s from [[Macon County, Alabama]].<ref name=":2">{{cite book|last=Reverby|first=Susan|title=Examining Tuskegee: The Infamous Syphilis Study and its Legacy|publisher=[[The University of North Carolina Press]]|location=Chapel Hill, North Carolina|year=2009|page=30|isbn=9780807833100}}</ref> Of these men, 399 had latent syphilis, with a control group of 201 men who were not infected.<ref name=":1" /> As an incentive for participation in the study, the men were promised free medical care. While the men were provided with both medical and mental care that they otherwise would not have received,<ref>{{Cite journal|last=Reverby|first=S.M.|date=1999|title=Rethinking the Tuskegee Syphilis Study: Nurse Rivers, Silences, and the Meaning of Treatment|url=http://ftp.columbia.edu/itc/hs/pubhealth/p9740/readings/reverby.pdf|journal=[[Nursing History Review]]|volume=7|pages=3–28|doi=10.1891/1062-8061.7.1.3|pmid=10063364|s2cid=35965490}}</ref> they were deceived by the PHS, who never informed them of their syphilis diagnosis<ref name=":2" /><ref name=":4">{{Cite news|title='You've got bad blood': The horror of the Tuskegee syphilis experiment|url=https://www.washingtonpost.com/news/retropolis/wp/2017/05/16/youve-got-bad-blood-the-horror-of-the-tuskegee-syphilis-experiment/|last=Brown|first=DeNeen L.|newspaper=[[The Washington Post]]|language=en|date=May 16, 2017|access-date=May 14, 2020|archive-date=May 13, 2020|archive-url=https://web.archive.org/web/20200513010907/https://www.washingtonpost.com/news/retropolis/wp/2017/05/16/youve-got-bad-blood-the-horror-of-the-tuskegee-syphilis-experiment/|url-status=live}}</ref><ref name=":5">{{Cite web|title=Descendants of men in syphilis study emerging from shadows|url=https://www.al.com/news/2017/05/descendants_of_men_in_tuskegee.html|agency=[[Associated Press]]|date=May 10, 2017|publisher=[[al.com]] |language=en|access-date=May 14, 2020|archive-date=August 9, 2020|archive-url=https://web.archive.org/web/20200809131454/https://www.al.com/news/2017/05/descendants_of_men_in_tuskegee.html|url-status=live}}</ref><ref name=":6">{{Cite news|first=Jean|last=Heller|agency=[[Associated Press]]|date=July 26, 1972|title=Syphilis Victims in U.S. Study Went Untreated for 40 Years|language=en-US|work=[[The New York Times]]|url=https://www.nytimes.com/1972/07/26/archives/syphilis-victims-in-us-study-went-untreated-for-40-years-syphilis.html|access-date=May 14, 2020|issn=0362-4331|archive-date=February 9, 2014|archive-url=https://web.archive.org/web/20140209211124/http://select.nytimes.com/gst/abstract.html?res=F40616F6345A137B93C4AB178CD85F468785F9|url-status=live}}</ref><ref name=":7">{{Cite web|title=AP WAS THERE: Black men untreated in Tuskegee Syphilis Study|date=May 10, 2017 |url=https://apnews.com/e9dd07eaa4e74052878a68132cd3803a|publisher=[[AP News]]|access-date=
The men were initially told that the experiment was only going to last six months, but it was extended to 40 years.<ref name=":1" /> After funding for treatment was lost, the study was continued without informing the men that they would never be treated. None of the infected men were treated with [[penicillin]] despite the fact that, by 1947, the antibiotic was widely available and had become the standard treatment for syphilis.<ref name=":8">{{Cite web|title=The shameful legacy of Tuskegee syphilis study still impacts African-American men today|url=https://healthpolicy.fsi.stanford.edu/news/researchers-and-students-run-pilot-project-oakland-test-whether-tuskegee-syphilis-trial-last|last=Duff-Brown|first=Beth|date=January 6, 2017|publisher=Stanford Health Policy|language=en|access-date=
The study continued, under numerous Public Health Service supervisors, until 1972, when a leak to the press resulted in its termination on November 16 of that year.<ref>{{Cite web|title='I Didn't Want to Believe It': Lessons from Tuskegee 40 Years Later|url=http://advocatesaz.org/2012/11/15/i-didnt-want-to-believe-it-lessons-from-tuskegee-40-years-later/|last=Matt|date=
The 40-year Tuskegee Study was a major violation of [[Medical ethics|ethical standards]]
On May 16, 1997, President [[Bill Clinton]] formally apologized on behalf of the United States to victims of the study, calling it shameful and racist.<ref name="ClintonApology">{{cite news |title=Clinton Apologizes To Tuskegee Experiment Victims |url=http://www.cnn.com/ALLPOLITICS/1997/05/16/tuskegee.apology/ |access-date=
==History==
Line 41:
Investigators enrolled in the study a total of 600 impoverished, African-American [[sharecropper]]s.<ref name=":2" /> Of these men, 399 had latent syphilis, with a control group of 201 men who were not infected.<ref name=":1" /> As an incentive for participation in the study, the men were promised free medical care, but were deceived by the PHS, who never informed subjects of their diagnosis, despite the risk of infecting others, and the fact that the disease could lead to blindness, deafness, mental illness, heart disease, bone deterioration, the collapse of the central nervous system, and death.<ref name=":4"/><ref name=":5"/><ref name=":6"/><ref name=":7"/> Instead, the men were told that they were being treated for "bad blood", a colloquialism that described various conditions such as syphilis, [[anemia]], and fatigue. The collection of illnesses the term included was a leading cause of death within the southern African-American community.<ref name=":1" />
At the
Throughout, participants remained ignorant of the study clinicians' true purpose, which was to observe the natural course of untreated syphilis.<ref name=":2" /> Study clinicians could have chosen to treat all syphilitic subjects and close the study, or split off a [[control group]] for testing with penicillin. Instead, they continued the study without treating any participants; they withheld treatment and information about penicillin from the subjects. In addition, scientists prevented participants from accessing syphilis treatment programs available to other residents in the area.<ref>{{Cite book|last=Jones|first=James H.|url=https://archive.org/details/badbloodtuskegee00jone/page/161/|title=Bad Blood: The Tuskegee Syphilis Experiment|publisher=[[Free Press (publisher)|The Free Press]]|year=1981|isbn=978-0029166703|location=New York City|page=[https://archive.org/details/badbloodtuskegee00jone/page/161/ 161–62]}}</ref> The researchers reasoned that the knowledge gained would benefit humankind; however, it was determined afterward that the doctors did harm their subjects by depriving them of appropriate treatment once it had been discovered. The study was characterized as "the longest non-therapeutic experiment on human beings in medical history."<ref name="nyfp" />
To ensure that the men would show up for the possibly dangerous, painful, diagnostic, and non-therapeutic [[Lumbar puncture|spinal taps]], doctors sent participants a misleading letter titled "Last Chance for Special Free Treatment".<ref name=":0" />
Line 51 ⟶ 49:
The U.S. Public Health Service Syphilis Study at Tuskegee published its first clinical data in 1934 and issued its first major report in 1936. This was before the discovery of penicillin as a safe and effective treatment for syphilis. The study was not secret, since reports and data sets were published to the medical community throughout its duration.<ref name=":2" />
During World War II, 256 of the infected subjects registered for the draft and were consequently diagnosed as having syphilis at military induction centers and ordered to obtain treatment for syphilis before they could be taken into the armed services.<ref name=":15">{{Cite book|title=Doctor of Public Health Student Handbook|publisher=University of Kentucky College of Public Health|location=Lexington, Kentucky|year=2004|page=17}}</ref><ref name=Reverby2012>{{cite book |editor1-last=Reverby |editor1-first=Susan M. |title=Tuskegee's Truths: Rethinking the Tuskegee Syphilis Study |year=2012 |publisher=[[UNC Press Books]] |location=Chapel Hill, North Carolina|isbn=978-1469608723 |pages=226–28 |url=https://books.google.com/books?id=f3q0CgAAQBAJ&pg=PA226 |access-date=
Later, Smith, a local PHS representative involved in the study, wrote to Vonderlehr to ask what should be done with patients who had tested negative for syphilis at the time of enrollment in the study and were being used as control subjects but had later tested positive when registering for the draft: "So far, we are keeping the known positive patients from getting treatment. Is a control case of any value to the study, if he has contracted syphilis? Shall we withhold treatment from the control case who has developed syphilis?"<ref name=Reverby2012/> Vonderlehr replied that such cases "have lost their value to the study. There is no reason why these patients should not be given appropriate treatment unless you hear from Doctor Austin V. Deibert who is in direct charge of the study".<ref name=Reverby2012/>
By 1947, penicillin had become standard therapy for syphilis. The U.S. government sponsored several public health programs to form "rapid treatment centers" to eradicate the disease. When campaigns to eradicate [[venereal disease]] came to Macon County, study researchers prevented their subjects from participating.<ref name=":15" /> Although some of the men in the study received arsenical or penicillin treatments elsewhere, for most of them this did not amount to "adequate therapy".<ref>{{Cite journal|last1=Benedek|first1=Thomas G.|journal=[[Perspectives in Biology and Medicine]]|last2=Erlen|first2=Jonathon|pages=24–25|title=The Scientific Environment of the Tuskegee Study of Syphilis, 1920–1960|year=1999|volume=43|issue=1|publisher=[[Johns Hopkins University Press]]|location=Baltimore, Maryland|doi=10.1353/pbm.1999.0034|pmid=10701219|s2cid=34614156}}</ref> [[File:Tuskegee-syphilis-study subjects-talking-to-nurse-eunice-rivers.jpg|thumb|Subjects talking with study coordinator, Nurse Eunice Rivers, c. 1970|alt=]]By the end of the study in 1972, only 74 of the test subjects were still alive.<ref name=":7" /> Of the original 399 men, 28 had died of syphilis, 100 died of related complications, 40 of their wives had been infected, and 19 of their children were born with [[congenital syphilis]].<ref name=":11" />[[File:Tuskegee-syphilis-study doctor injects subject with placebo.gif|thumb|
The revelation in 1972 of study failures by [[whistleblower]] [[Peter Buxtun]] led to major changes in U.S. law and regulation concerning the protection of participants in clinical studies. Studies now require [[informed consent]],<ref name=":9">{{Cite web|title=Code of Federal Regulations Title 45 Part 46 Protections of Human Subjects 46.1.1 (i)|url=https://www.hhs.gov/ohrp/sites/default/files/ohrp/policy/ohrpregulations.pdf|date=January 15, 2009|website=[[U.S. Department of Health and Human Services]]|access-date=May 14, 2020|archive-date=March 28, 2016|archive-url=https://web.archive.org/web/20160328191725/http://www.hhs.gov/ohrp/policy/ohrpregulations.pdf|url-status=live}}</ref> communication of [[diagnosis]] and accurate reporting of test results.<ref name=":10">{{Cite web|title=Final Report of the Tuskegee Syphilis Study Legacy Committee|url=http://www.hsl.viriginia.edu/historical/medical_history/bad_blood/report.cfm|date=May 20, 1996|website=Tuskegee Syphilis Study Legacy Committee|access-date=May 14, 2020}}{{Dead link|date=November 2023 |bot=InternetArchiveBot |fix-attempted=yes }}</ref>
===Study clinicians===
The [[venereal disease]] section of the [[U.S. Public Health Service]] (PHS) formed a study group in 1932 at its national headquarters in Washington, D.C. Taliaferro Clark, head of the USPHS, is credited with founding it. His initial goal was to follow untreated syphilis in a group of African-American men for six months to one year, and then follow up with a treatment phase.<ref name=":2" /><ref name="nyfp">{{cite book|first=James H.|last=Jones|url=https://archive.org/details/badbloodtuskegee00jone_0|title=Bad Blood: The Tuskegee Syphilis Experiment|publisher=[[Free Press (publisher)|Free Press]]|year=1981|isbn=978-0-02-916676-5|location=New York City|page=91}}</ref> When the [[Rosenwald Fund]] withdrew its financial support, a treatment program was deemed too expensive.<ref name=":14">{{Cite thesis|last=Whorley|first=Tywanna Marie|date=2006|title=The Tuskegee Syphilis Study: Access and Control over Controversial Records|url=http://d-scholarship.pitt.edu/9244/1/Dissertation_Whorley_2006.pdf|publisher=[[University of Pittsburgh]]|journal=|access-date=May 14, 2020|archive-date=August 9, 2020|archive-url=https://web.archive.org/web/20200809113148/http://d-scholarship.pitt.edu/9244/1/Dissertation_Whorley_2006.pdf|url-status=live}}</ref> Clark, however, decided to continue the study, interested in determining whether syphilis had a different effect on African-Americans than it did on Caucasians. A regressive study of untreated syphilis in white males had been conducted in Oslo, Norway, and could provide the basis for comparison.<ref name=":14" /><ref>{{Cite book|last=Jones|first=James H.|title=Bad Blood: The Tuskegee Syphilis Experiment|publisher=The Free Press|year=1981|isbn=978-0029166703|location=New York|pages=17–19}}</ref> The prevailing belief at the time was white people were more likely to develop neurosyphilis and that black people were more likely to sustain cardiovascular damage. Clark resigned before the study was extended beyond its original length.<ref>{{Cite book|last1=Fregni|first1=Felipe|title=Critical Thinking in Clinical Research: Applied Theory and Practice Using Case Studies|last2=Illigens|first2=Ben M.W.|publisher=Oxford University Press|location=Oxford, England|isbn=9780199324507 |date=2018|page=11}}</ref>
Although Clark is usually assigned blame for conceiving the U.S. Public Health Service Syphilis Study at Tuskegee, [[Thomas Parran Jr.]] also helped develop a non-treatment study in Macon County, Alabama. As the Health Commissioner of New York State (and former head of the PHS Venereal Disease Division), Parran was asked by the Rosenwald Fund to assess their serological survey of syphilis and demonstration projects in five Southern states.<ref>Jones (1981), pp.52–90
Oliver C. Wenger was the director of the regional PHS Venereal Disease Clinic in [[Hot Springs, Arkansas]]. He and his staff took the lead in developing study procedures. Wenger continued to advise and assist the study when it was adapted as a long-term, no-treatment observational study after funding for treatment was lost.<ref>{{Cite book|last1=Blumenthal|first1=Daniel S.|title=Community-Based Health Research: Issues and Methods|last2=DiClemente|first2=Ralph J.|publisher=[[Springer Publishing]]|date=2003|isbn=978-0-8261-2025-0|location=New York City|page=50}}</ref>
Line 68 ⟶ 66:
[[Raymond A. Vonderlehr]] was appointed on-site director of the research program and developed the policies that shaped the long-term follow-up section of the project. His method of gaining the "[[Informed consent|consent]]" of the subjects for [[Lumbar puncture|spinal taps]] (to look for signs of [[neurosyphilis]]) was by advertising this diagnostic test as a "special free treatment".<ref name=":2" /> He also met with local black doctors and asked them to deny treatment to participants in the Tuskegee Study. Vonderlehr retired as head of the venereal disease section in 1943, shortly after [[penicillin]] was proven to cure syphilis.<ref name=":0" />
Several African-American health workers and educators associated with the [[Tuskegee Institute]] played a critical role in the
Nurse [[Eunice Rivers]], who had trained at Tuskegee Institute and worked at its hospital, was recruited at the start of the study to be the main point of contact with the participants.<ref name=":2" /> Rivers played a crucial role in the study because she served as the direct link to the regional African-American community. Vonderlehr considered her participation to be the key to gaining the trust of the subjects and promoting their participation.<ref name="shadow">
{{cite journal|last1=Thomas|first1=Stephen B.|last2=Crouse Quinn|first2=Sandra|s2cid=68358316|year=2000|title=Light on the Shadow of the Syphilis Study at Tuskegee|url=http://health-equity.pitt.edu/658/1/Light_on_the_Shadow_of_the_Syphilis_Study_at_Tuskegee.pdf|url-status=dead|journal=[[Health Promotion Practice]]|publisher=[[SAGE Publications]]|location=Thousand Oaks, California|volume=1|issue=3|pages=234–37|doi=10.1177/152483990000100306|hdl=1903/22693|archive-url=https://web.archive.org/web/20160616213555/http://health-equity.pitt.edu/658/1/Light_on_the_Shadow_of_the_Syphilis_Study_at_Tuskegee.pdf|archive-date=June 16, 2016|access-date=December 12, 2014
</ref> As a part of "Miss Rivers' Lodge", participants would receive free physical examinations at [[Tuskegee University]], free rides to and from the clinic, hot meals on examination days, and free treatment for minor ailments. Rivers was also key in convincing families to sign autopsy agreements in return for funeral benefits. As the study became long-term, Rivers became the chief person who provided continuity to the participants. She was the only study staff person to work with participants for the full 40 years.<ref name=":2" />
[[File:Oliver Wenger.jpg|thumb|Oliver Wenger|215x215px]]▼
<gallery>
File:vonderle.gif|[[Raymond A. Vonderlehr]] (medical doctor)
File:Eugene Dibble.jpg|[[Eugene Dibble]] (medical doctor)
File:Eunice Rivers.jpg|[[Eunice Rivers Laurie|Eunice Rivers]] (nurse)
</gallery>
{{clear}}
Line 86 ⟶ 84:
[[File:Tuskegee-syphilis-experiment-test-subjects.gif|thumb|right|250px|Group of Tuskegee Experiment test subjects]]
Several men employed by the PHS, namely Austin V. Deibert and Albert P. Iskrant, expressed criticism of the study, primarily on the grounds of
Another dissenter was Irwin Schatz, a young Chicago doctor only four years out of medical school. In 1965, Schatz read an article about the study in a medical journal and wrote a letter directly to the study's authors confronting them with a declaration of brazen unethical practice.<ref>{{Cite news|title=Dr. Irwin Schatz, the first, lonely voice against infamous Tuskegee study, dies at 83|url=https://www.washingtonpost.com/news/morning-mix/wp/2015/04/20/dr-irwin-schatz-the-first-lonely-voice-against-infamous-tuskegee-study-dies-at-83/|last=Kaplan|first=Sarah|newspaper=Washington Post|language=en|access-date=
In 1966, [[Peter Buxtun]], a PHS venereal-disease investigator in San Francisco, sent a letter to the national director of the Division of Venereal Diseases expressing his concerns about the ethics and morality of the extended U.S. Public Health Service Syphilis Study at Tuskegee.<ref>{{Cite web|title=Tuskegee Truth Teller|url=https://theamericanscholar.org/tuskegee-truth-teller/|date=December 4, 2017
In 1968, [[William Carter Jenkins]], an African-American statistician in the [[U.S. Public Health Service|PHS]] and part of the [[Department of Health, Education, and Welfare]] (HEW), founded and edited ''The Drum'', a newsletter devoted to ending racial discrimination in HEW. In ''The Drum'', Jenkins called for an end to the study.<ref>{{Cite news|title=Bill Jenkins, epidemiologist who tried to end Tuskegee syphilis study, dies at 73|url=https://www.washingtonpost.com/local/obituaries/bill-jenkins-epidemiologist-who-tried-to-end-tuskegee-syphilis-study-dies-at-73/2019/02/27/2319e142-3aa2-11e9-a06c-3ec8ed509d15_story.html|last=Smith|first=Harrison|date=February 27, 2019|newspaper=Washington Post|language=en|access-date=
Buxtun finally went to the press in the early 1970s. The story broke first in the ''[[Washington Star]]'' on July 25, 1972, reported by [[Jean Heller]] of the Associated Press.<ref name=":6" /> It became front-page news in the ''[[New York Times]]'' the following day. Senator [[Ted Kennedy|Edward Kennedy]] called [[Congressional hearings]], at which Buxtun and HEW officials testified. As a result of public outcry, the CDC and PHS appointed an ad hoc advisory panel to review the study.<ref name=":4" /> The panel found that the men agreed to certain terms of the experiment, such as examination and treatment. However, they were not informed of the study's actual purpose.<ref name=":1" /> The panel then determined that the study was medically unjustified and ordered its termination.{{citation needed|date=January 2021}}
Line 98 ⟶ 96:
In 1974, as part of the settlement of a [[class action|class action lawsuit]] filed by the [[NAACP]] on behalf of study participants and their descendants, the U.S. government paid $10 million ($51.8 million in 2019) and agreed to provide free medical treatment to surviving participants and surviving family members infected as a consequence of the study. Congress created a commission empowered to write regulations to deter such abuses from occurring in the future.<ref name=":1" />
A collection of materials compiled to investigate the study is held at the [[National Library of Medicine]] in Bethesda, Maryland.<ref>{{Cite web|title=Documents on the origin and development of the Tuskegee syphilis study 1921-1973|url=https://oculus.nlm.nih.gov/cgi/f/findaid/findaid-idx?c=nlmfindaid;idno=tuskegee264|website=oculus.nlm.nih.gov|access-date=
{{clear}}
Line 107 ⟶ 105:
In 1974, Congress passed the [[National Research Act]] and created a [[National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research|commission]] to study and write regulations governing studies involving human participants. Within the [[United States Department of Health and Human Services]], the [[Office for Human Research Protections]] (OHRP) was established to oversee clinical trials. Now studies require [[informed consent]],<ref name=":9" /> communication of diagnosis and accurate reporting of test results.<ref name=":10" /> Institutional review boards (IRBs), including laypeople, are established in scientific research groups and hospitals to review study protocols, protect patient interests, and ensure that participants are fully informed.
In 1994, a multi-disciplinary symposium was held on the U.S. Public Health Service Syphilis Study at Tuskegee: ''Doing Bad in the Name of Good?: The Tuskegee Syphilis Study and Its Legacy'' at the [[University of Virginia]]. Following that, interested parties formed the Tuskegee Syphilis Study Legacy Committee to develop ideas that had arisen at the symposium, chaired by [[Vanessa Northington Gamble]]. It issued its final report in May 1996, having been established at a meeting on January 18–19 of that year.<ref name=":16">{{Cite web|title=Final Report of the Tuskegee Syphilis Study Legacy Committee – May 1996|url=http://exhibits.hsl.virginia.edu/badblood/report/|website=Bad Blood: The Tuskegee Syphilis Study|language=en-US|access-date=
# President [[Bill Clinton]] should publicly apologize to the survivors and their community for past government wrongdoing related to the study due to the harm done to the Macon County community and Tuskegee University, and the fears of government and medical abuse the study created among African Americans. No apology had yet been issued at the time.<ref name=":16" />
# The Committee and relevant federal agencies should develop a strategy to redress the damages, specifically recommending the creation of a center at Tuskegee University for public education about the study, "training programs for [[Health professional|health care providers]]", and a center for the study of [[research ethics|ethics in scientific research]].<ref name=":16" />
Line 115 ⟶ 113:
{{blockquote|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, and I am sorry... To our African American citizens, I am sorry that your federal government orchestrated a study so clearly racist.<ref>{{Cite web|title=Apology For Study Done in Tuskegee|url=http://clinton4.nara.gov/textonly/New/Remarks/Fri/19970516-898.html|archive-url=https://web.archive.org/web/20141011090548/http://clinton4.nara.gov/textonly/New/Remarks/Fri/19970516-898.html|url-status=dead|archive-date=October 11, 2014|date=2014-10-11|access-date=2020-05-14}}</ref>}}
Five of the eight study survivors attended the White House ceremony.<ref name=":17">{{Cite web|title=A Survivor's Grace At 95, Tuskegee study participant Herman Shaw prefers reconciliation to recrimination, forgiveness to bitterness.|url=https://www.baltimoresun.com/news/bs-xpm-1997-08-24-1997236123-story.html|last=Banisky|first=Sandy|website=baltimoresun.com|date=August 24, 1997 |language=en-US|access-date=
The presidential apology led to progress in addressing the second goal of the Legacy Committee. The federal government contributed to establishing the National Center for Bioethics in Research and Health Care at Tuskegee, which officially opened in 1999 to explore issues that underlie research and medical care of African Americans and other under-served people.<ref name="About_the_Center">{{Cite web |title=About the Center {{!}} Tuskegee University |url=https://www.tuskegee.edu/about-us/centers-of-excellence/bioethics-center/about-the-center |url-status=live |archive-url=https://web.archive.org/web/20210311014629/https://www.tuskegee.edu/about-us/centers-of-excellence/bioethics-center/about-the-center |archive-date=March 11, 2021 |access-date=March 11, 2021 |website=www.tuskegee.edu |language=en-US}}</ref>
In June 2022, the [[Milbank Memorial Fund]] apologized to descendants of the study's victims for its the role in the study.<ref>{{cite news |last1=Reeves |first1=Jay |title=New York fund apologizes for role in Tuskegee syphilis study |url=https://apnews.com/article/politics-health-syphilis-race-and-ethnicity-business-0a393357b7014707cf2dd18454a3cce4 |access-date=June 21, 2022 |work=[[AP News]] |date=June 11, 2022 |language=en}}</ref>
=== Study participants ===
Line 133:
===Scientific failings===
Aside from a study of racial differences, one of the main goals that researchers in the study wanted to accomplish was to determine the extent to which treatment for syphilis was necessary and at what point in the progression of the disease it should be treated. For this reason, the study emphasized observation of individuals with late latent syphilis.<ref name=":0" /><ref name=":2" /> However, despite
Austin V. Deibert of the PHS recognized that since the
===Racism===
Line 141:
The conception which lay behind the U.S. Public Health Service Syphilis Study at Tuskegee in 1932, in which 100% of its participants were poor, rural African-American men with very limited access to health information, reflects the [[Racism in the United States|racial attitudes in the U.S. at that time]]. The clinicians who led the study assumed that African-Americans were particularly susceptible to [[Sexually transmitted infection|venereal diseases]] because of their race, and they assumed that the study's participants were not interested in receiving medical treatment.<ref name=":0" /><ref name=":18">{{Cite journal|last=Howell|first=Joel|title=Race and U.S. Medical Experimentation: The Case of Tuskegee|journal=Reports in Public Health, University of Michigan|year=2017|volume=33Suppl 1|issue=Suppl 1|pages=e00168016|doi=10.1590/0102-311X00168016|pmid=28492710|doi-access=free}}</ref>
Taliaferro Clark said, "The rather low intelligence of the Negro population, depressed economic conditions, and the common promiscuous sex relations not only contribute to the spread of syphilis but the prevailing indifference with regards to treatment."<ref name=":18" /> In reality, the promise of medical treatment, usually reserved only for emergencies among the rural black population of Macon County, Alabama, was what secured
===Public trust===
The revelations of mistreatment under the U.S. Public Health Service Syphilis Study at Tuskegee are believed to have significantly damaged the trust of the black community toward public health efforts in the United States.<ref>{{Cite journal|last1=Thomas|first1=SB|last2=Quinn|first2=SC|date=November 1991|title=The Tuskegee Syphilis Study, 1932 to 1972: implications for HIV education and AIDS risk education programs in the black community|journal=Am J Public Health|volume=81|issue=11|pages=1498–505|doi=10.2105/AJPH.81.11.1498|pmid=1951814|pmc=1405662}}</ref><ref name=":19">{{Cite journal|last1=Alsan|first1=Marcella|last2=Wanamaker|first2=Marianne|date=2018|title=Tuskegee and the Health of Black Men|journal=Quarterly Journal of Economics|volume=133|issue=1|pages=407–55|doi=10.1093/qje/qjx029|pmid=30505005|pmc=6258045}}</ref> Observers believe that the abuses of the study may have contributed to the reluctance of many poor black people to seek routine [[preventive care]].<ref name=":19" /><ref>{{Cite web|title=Tuskegee's ghosts: Fear hinders black marrow donation - CNN.com|url=https://www.cnn.com/2007/HEALTH/02/07/bone.marrow/index.html|website=www.cnn.com|access-date=
While the final report of the Tuskegee Syphilis Study Legacy Committee noted that the study had contributed to fears among the African American community of abuse and exploitation by government officials and medical professionals,<ref name=":16" /> medical mistreatment of African Americans and resulting mistrust predates the Tuskegee Syphilis Study.<ref name="Shadow" /> [[Vanessa Northington Gamble]], who had chaired the committee, addressed this in a seminal article published in 1997<ref name="Yuko">{{Cite news |last=Yuko |first=Elizabeth |date=March 9, 2021
A 2016 paper by [[Marcella Alsan]] and Marianne Wanamaker found "that the historical disclosure of the [Tuskegee experiment] in 1972 is correlated with increases in medical mistrust and mortality and decreases in both outpatient and inpatient physician interactions for older black men. Our estimates imply life expectancy at age 45 for black men fell by up to 1.4 years in response to the disclosure, accounting for approximately 35% of the 1980 life expectancy gap between black and white men."<ref name=":19" />
Line 154:
Distrust of the government, in part formed through the study, contributed to persistent rumors during the 1980s in the black community that the government was responsible for the HIV/AIDS crisis by having deliberately introduced the virus to the black community as some kind of experiment.<ref>{{Cite book|last=Jones|first=James H.|title=Bad Blood: New and Expanded Edition|publisher=Simon & Schuster|year=1993|isbn=978-0-02-916676-5|pages=220–41}}</ref> In February 1992 on ABC's ''[[Prime Time Live]]'', journalist [[Jay Schadler]] interviewed Dr. Sidney Olansky, Public Health Services director of the study from 1950 to 1957. When asked about the lies that were told to the study subjects, Olansky said, "The fact that they were illiterate was helpful, too, because they couldn't read the newspapers. If they were not, as things moved on they might have been reading newspapers and seen what was going on."<ref name="shadow" />
On January 3, 2019, a United States federal judge stated that [[Johns Hopkins University]], [[Bristol-Myers Squibb]] and the [[Rockefeller Foundation]] must face a $1 billion lawsuit for their roles in a [[Guatemala syphilis experiments|similar experiment affecting Guatemalans]].<ref>{{Cite news|date=January 4, 2019
Some African Americans have been hesitant to get [[COVID-19 vaccine|vaccinated against COVID-19]] due to the Tuskegee experiments.<ref>{{Cite news|last=Elliott|first=Debbie|date=
==Ethical implications==
The U.S. Public Health Service Syphilis Study at Tuskegee highlighted issues in race and science.<ref>{{Cite news|last=Chadwick|first=A.|date=July 25, 2002|title=Remembering the Tuskegee Experiment|work=NPR}}</ref> The aftershocks of this study, and other [[Human experimentation in the United States|human experiments in the United States]], led to the establishment of the [[National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research]] and the [[National Research Act]].<ref name=":13" /> The latter requires the establishment of institutional review boards (IRBs) at institutions receiving federal support (such as grants, cooperative agreements, or contracts). Foreign consent procedures can be substituted which offer similar protections and must be submitted to the ''[[Federal Register]]'' unless a statute or Executive Order requires otherwise.<ref name=":13" />
In the period following World War II, the revelation of [[the Holocaust]] and related [[Nazi human experimentation|Nazi medical abuses]] brought about changes in international law. Western allies formulated the [[Nuremberg Code]] to protect the rights of research subjects. In 1964, the [[World
Writer James Jones said that the physicians were fixated on African-American sexuality. They believed that African-Americans willingly had sexual relations with infected persons (although no one had been told his diagnosis).<ref>{{Cite book|last=Jones|first=James H.|title=Bad Blood: The Tuskegee Syphilis Experiment|publisher=Free Press|year=1993|location=New York|pages=22–23|chapter=A Notoriously Syphilis-Soaked Race}}</ref> Due to the lack of information, the participants were manipulated into continuing the study without full knowledge of their role or their choices.<ref>{{Cite book|last1=Katz|first1=Ralph|title=The Search for the Legacy of the USPHS Syphilis Study at Tuskegee|last2=Warren|first2=Rueben|publisher=Lexington Books|year=2011|location=Lanham}}</ref> Since the late 20th century, IRBs established in association with clinical studies requirements that all involved in the study be willing and voluntary participants.<ref>{{Cite journal|last=Perkiss|first=Abigail|date=2008|title=Public Accountability And The Tuskegee Syphilis Experiments: A Restorative Justice Approach|journal=Berkeley Journal of African-American Law & Policy|pages=70}}</ref>
The Tuskegee University Legacy Museum has on display a check issued by the United States government on behalf of Dan Carlis to Lloyd Clements, Jr., a descendant of one of the U.S. Public Health Service Syphilis Study at Tuskegee participants.<ref name=":20">{{Cite news|last=Clements|first=Lloyd
==Society and culture==
Line 188:
* Avant-garde metal band [[Zeal & Ardor]]'s song "Tuskegee", from the 2020 EP ''Wake of a Nation'', is about the Tuskegee Syphilis Study.
* Jazz musician [[Don Byron]]'s 1992 album ''[[Tuskegee Experiments]]'' was inspired by the study.
*Atlanta rapper [[JID]] juxtaposes his life to the Tuskegee Experiment in his 2021 song "Skegee".<ref>{{Cite web|title=J.I.D pays homage to the historical Tuskegee experiments in Alabama in "Skegee" video – Music News|url=http://abcnewsradioonline.com/music-news/2021/2/25/jid-pays-homage-to-the-historical-tuskegee-experiments-in-al.html|url-status=live|access-date=
;Television
Line 214:
;Video production
*''[[Medical Racism: The New Apartheid]]'' (2021) exploits the Tuskegee trials to promote [[COVID-19 misinformation]].<ref name=mark>{{Cite news|last1=Zadrozny|first1=Brandy|author-link1=Brandy Zadrozny|last2=Adams|first2=Char|date=
==See also==
Line 220:
* [[Declaration of Geneva]]
* [[Eugenics in the United States]]
* [[Kennedy Krieger Institute's Lead-Based Paint Abatement and Repair and Maintenance Study]]
* [[Guatemala syphilis experiments]]
* [[Human experimentation in North Korea]]
* [[Human subject research]]
Line 326 ⟶ 328:
{{Commons category}}
* {{cite web|url=http://tuskegeestudy.weebly.com/|title=Bad Blood: The Tuskegee Syphilis Study|publisher=Claude Moore Health Sciences Library, [[University of Virginia]]}} (Archived.)
* {{cite web|title=Patient medical files |url=https://www.archives.gov/southeast/finding-aids/tuskegee.html|website= National Archives and Records Administration Southeast Region|location= Morrow, GA|date=
* {{cite web|publisher=Michigan State University|url=http://www.msu.edu/course/hm/546/tuskegee.htm |archive-url=https://wayback.archive-it.org/all/20001027222606/http://www.msu.edu/course/hm/546/tuskegee.htm |url-status=dead |archive-date=October 27, 2000 |title=Review of the TSS}}
* {{cite web|url=https://www.cdc.gov/tuskegee/ |title=U.S. Public Health Service Syphilis Study at Tuskegee|publisher= [[Centers for Disease Control]]|date=October 3, 2018
{{Medical ethics cases}}
|