National Institutes of Health
The Belmont Report Ethical Principles and Guidelines for the Protection of Human Subjects of Research
It's Not 'Tuskegee' Revisited
Congress is posed to consider ill-advised legislation introduced by Rep. Gary Ackerman (D-N.Y.) that would bar the blind HIV testing of blood samples taken from newborns, writes Ronald Bayer in the Washington Post. Ackerman's proposal would permit only screening that would make it possible to notify the mothers of the babies who test HIV-positive. Republicans and Democrats alike have signed on to the proposal, illustrating the appeal of a measure that on the surface is only trying to protect mothers and their children. But, according to Bayer, the specter of the Tuskegee syphilis study--the federal experiment that traced the course of the disease in African American men, who were not informed that they had a treatable sexually transmitted disease--surrounds the debate.
Many African-Americans cite the Tuskegee experiment as grounds for cynicism about the government's intentions. From 1932 to 1972 about 400 poor black men were used as guinea pigs as scientists studied the effects of syphilis left untreated.
"It's very easy for a number of people to think that 'Well, since that happened,' ... a number of people have the idea that there's always that possibility that people who are disadvantaged may be used as guinea pigs in terms of medicine," said Thomas Blocker, Director of Health Professions at Morehouse College.
The New Tuskegee Experiment
The Village Voice
In an interview with Dwyer, Dr. Arthur Ammann, a specialist in pediatric AIDS, compared the anonymous testing of infants in New York to the Tuskegee experiment, in which black men with syphilis were observed, but not treated, in a government study. Amman also noted that, in 1983, the community agreed that anyone who had contracted HIV through a blood transfusion had a right to be informed.
Libertarians ask: Why aren't the politicians responsible for Tuskegee syphilis experiments being prosecuted?
An apology isn't enough. The politicians and government employees responsible for the Tuskegee syphilis experiments should be prosecuted by a Nuremberg-style tribunal, the Libertarian Party demanded today.
"It's outrageous that President Clinton thinks he can pay off four decades of suffering with an apology and a check," said Steve Dasbach, the party's national chairman. "The politicians who authorized this experiment and the government employees who administered it should be hunted down, prosecuted, and punished for their crimes against humanity."
Tuskegee's Long Arm Still Touches a Nerve
New York Times
The impact of the Tuskegee Study, in which blacks in the South were not treated for syphilis as part of a government study, continues to be felt as the mistrust it generated interferes with attempts to combat AIDS in certain black areas. Cornelius Baker, director of the National Association of People with AIDS, reports that "many blacks, especially in the South, simply won't take medicines," because they fear being "killed off as part of the master plan." AIDS education programs in black communities have often prompted the topic of Tuskegee.
Mistrust of Doctors Lingers After Tuskegee
The Tuskegee Syphilis Study ended a quarter of a century ago, but its effects can still be felt. The study, which followed the progress of untreated syphilis in nearly 400 poor black men, ended following publicity generated by an Associated Press article. However, many African Americans' distrust in today's medical establishment can be attributed to Tuskegee, says Dr. Carl C. Bell, executive director of Chicago's Community Mental Health Council. Although understandable, Bell notes that the skepticism is a serious obstacle to dealing with health issues in African Americans, who are worse off than whites by nearly all health measures.
An Old Experiment's Legacy: Distrust of New AIDS Drugs
New York Times
Doctors, medical researchers, and patient advocates say a pervasive mistrust of the medical establishment exists among the African American community--a distrust that has caused a significant number of African Americans with HIV/AIDS to forego valuable treatment with protease inhibitors. Infamous incidents like the Tuskegee syphilis study have convinced a large number of African Americans that AIDS is a genocidal plot devised by the white medical establishment.
'Bad Blood' Still Flows in Tuskegee Study
The infamous Tuskegee study, in which 399 African American men in Alabama did not know they were receiving placebo treatment for syphilis, and were then tracked by the federal government to study the effects of untreated disease, still exerts a powerful influence. The deceit used by the researchers and the disregard shown for the participants' health have created a suspicion of government in many segments of the African American community.
The Ghost of Tuskegee
In a commentary in the Washington Post, Health Editor Abigail Trafford notes that even after President Clinton issues the nation's belated apology to the survivors and relatives of those who took part in the Tuskegee experiment, the incident's legacy will persist. She cites a persistent and widespread distrust of the medical establishment by African Americans.
Black Distrust Legacy
National Public Radio Online
NPR's Brenda Wilson reports myths surrounding the Tuskegee experiment have made it more difficult for health professionals and doctors to treat AIDS among African Americans, since many are reluctant to use experimental drugs.
Close-up: Tuskegee experiment's legacy is the spread of suspicion
The Seattle Times
The so-called Tuskegee experiment has since become a national symbol of science run amok, a metaphor in the black community for sinister motives in medical research.
Yet many believe the legacy of Tuskegee rattles society even now, in ways that an apology by Clinton only begins to address. A quarter-century after the experiment was ended, distrust of the medical establishment lingers among minorities in ways that can affect not only medical science but also minority members' health.
About the study on syphilis, black men
The Seattle Times
The Tuskegee Study of Untreated Syphilis in the Negro Male, which lasted from 1932 to 1972, involved 600 black men, 399 of whom had syphilis and 201 of whom did not. The men signed up with the U.S. Public Health Service, which was conducting a study on the effects of syphilis on the human body.
Sour Legacy of Tuskegee Syphilis Study Lingers
The Tuskegee syphilis study, even with President Clinton's apology Friday on the government's behalf, remains a low point for the public health service.
The experiments have left a legacy of mistrust in the African-American community that is tangible enough to be measured by social scientists in the Birmingham, Alabama, area.
"About 22 percent of African-Americans who we surveyed in the Birmingham area had some mistrust with regards to participating in research studies because of the Tuskegee Syphilis Study," said Lee Green of the University of Alabama.
Tuskegee Experiment's Legacy: Lack of Trust
Sixty-five years after the federal government undertook its syphilis research project on unsuspecting African-American men, President Clinton apologized to the survivors and all victims' families.
In 1932, the government recruited 399 men from an area around Tuskegee, Ala., for syphilis research. The indigent men, most of them sharecroppers, were told they were receiving free medical treatment for "bad blood." The men were not told they had syphilis, nor were they ever treated for the disease, even after penicillin was found to be a cure in the 1940s.
Syphilis Study Leaves Legacy of Mistrust
Twenty-five years after the Tuskegee Syphilis Experiment, black men in Alabama tend to distrust health promotion activities and medical research programs, according to a three-year study conducted by Professor Lee Green of the University of Alabama. Lee found that 27 percent of black males professed less interest in participating in health programs because of Tuskegee, while only 4 percent of white men expressed the same sentiment.
Scientists Defend Ethics of AIDS Research
The Journal's editorial compared the trials, which are designed to uncover less costly alternatives to AZT to treat women in poorer nations, to the Tuskegee syphilis study.
Shades of Tuskegee
Marcia Angell, executive editor of the New England Journal of Medicine, recently wrote an editorial that fiercely criticized the studies, calling them unethical and akin to the infamous Tuskegee syphilis experiment which knowingly withheld treatment from patients for the sake of science.
Africa AIDS Study Generates Anger, Bitter Exchanges
Ethics: A controversy over unethical AIDS research has been drawing more and more reactions, including one by the US White House. Should ethical standards in medical research be relaxed or circumvented when dealing with the poor and deprived?
It's AIDS, Not Tuskegee
Although it is unfortunate that the standard of care in Africa is no care at all, Ho explains that the placebo trials were designed by Africans to help Africans and are conducted with informed consent. Although use of a placebo in AIDS clinical trials in the United States is considered unethical, the African tests are practical and expedite the search for answers to questions about AZT treatment, Ho concludes.
Wall Street Journal
In a Wall Street Journal commentary, New England Journal of Medicine Executive Editor Marcia Angell defends her criticism of the Centers for Disease Control and Prevention and the National Institutes of Health for sponsoring placebo-based AZT trials among HIV-infected pregnant women in developing nations.
Jones condemns Tuskegee - Federal syphilis study took science too far, speaker says
The Stanford Daily
Researchers sometimes wrongfully justify morally questionable experiments in the name of scientific progress, Dr. James Jones told a crowd of about 150 in Fairchild Auditorium yesterday.
The U.S. Public Health Service's Tuskegee Syphilis Study was such a case, said Jones, who spoke as part of Martin Luther King Jr. Celebration Week.
The associate history professor at the University of Texas and author of "Bad Blood" said the Tuskegee experiment - carried out in Macon County, Ala., from 1932 to 1972 - began as an attempt by the U.S. Public Health Service to learn more about syphilis and discover treatments for the African-American population.
HIV Prevention and Intervention in the African American Community: A Public Health Perspective
The AIDS Knowledge Base
Despite its impact on the African American community, AIDS is not typically perceived among African Americans as an issue requiring the same level of intervention and concern as other public health issues, such as violence and drug abuse. One frequently cited reasons for this apathy -- particularly to government-sponsored AIDS education campaigns -- is the existence of a lingering "backlash" to the Tuskegee Syphilis Study, one of the most infamous studies of race and disease in the history of American science. The study was designed to observe the progression of syphilis in an untreated study population of some 399 African Americans in Alabama. It was administered by a small group within the U.S. Public Health Service between 1932 and 1972.
From its inception to its abrupt halt in 1972 as the result of public outrage, the directors of the study refused to acknowledge any ethical responsibility to the study's subjects or the failure to be treated for syphilis when penicillin became available. The Director of Venereal Diseases at the Public Health Service from 1943 to 1948 went to far as to claim in 1976 that, "The men's status did not warrant ethical debate. They were subjects, not patients; clinical material, not sick people."
Clinical Trials, Health Care, and The Tuskegee Legacy
University of Cincinnati
On July 26, 1972, the New York Times reported on what it called the "longest running non-therapeutic experiment on human beings in medical history." Departing from their Hippocratic oath to "first, do no harm," physicians from the U.S. Public Health Service allowed nearly 400 poor, black sharecroppers with syphilis to go untreated for forty years. These men from Macon County, Alabama were told they were being treated for "bad blood." However, they were all actually part of an experiment designed to study the progression of syphilis—a potentially fatal sexually transmitted disease.
Tuskegee Meeting Report Released to Public; More Minority Involvement in Clinical Trials Urged
American College of Radiology
The report reflects the proceedings from a national meeting that addressed the issue of minorities and medical clinical trials. The meeting was held last winter in Tuskegee, AL, the site of the infamous Tuskegee Syphilis Study trial, which involved 400 impoverished African-American men.
Because of fears generated by the Tuskegee experiments, where the 400 men were left untreated by U.S. government scientists to examine the effects of the disease, African-Americans have been reluctant to take part in other clinical trials. NCI has reported that while African-Americans make up 15% of the population, only 2-4% of those participating in cancer prevention trials are African-Americans.
Distrust of White Clinicians Hampers Efforts in Communities of Color
Adding to these imbalances is distrust that stems from unethical experiments involving African Americans, including the notorious Tuskegee Syphilis Study from 1932 to 1972. To address the HIV situation among African Americans, the National Minority AIDS Council recommends several solutions, including directing federal funds to follow national HIV trends, having the CDC fund sustained HIV prevention interventions for African Americans, and having the CDC fund a national effort to lower HIV infection among homosexual African Americans.
'Dangerously flawed' AIDS research criticized
Public Citizen, a consumer group affiliated with Ralph Nader, accused the government of deliberately denying AIDS-infected patients access to AZT, a drug that reduces the transmission of AIDS. The group's claims are based on federal documents it obtained on the research.
"It's Tuskegee part two," Public Citizen's Director Dr. Sidney Wolfe said, in reference to the notorious experiment involving African-American patients in Alabama. From 1932 to 1972 about 400 poor black men were used as guinea pigs as scientists studied the effects of syphilis when left untreated.