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The Tuskegee legacy: AIDS and the black community.

No scientific experiment inflicted more damage on the collective psyche of black Americans than the Tuskegee study. After Jean Heller broke the story in 1972, news of the tragedy spread in the black community. Confronted with the experiment's moral bankruptcy, many blacks lost faith in the government and no longer believed health officials who spoke on matters of public concern. Consequently, when a terrifying new plague swept the land in the 1980s and 1990s, the Tuskegee study predisposed many blacks to distrust health authorities, a fact many whites had difficulty understanding.

"Bizarre as it may seem to most people," declared the lead editorial in the New York Times on 6 May 1992, "many black Americans believe that AIDS and the health measures used against it are part of a conspiracy to wipe out the black race." To support their assertion, the editor cited a survey of black church members in 1990 that revealed "an astonishing 35 percent believed AIDS was a form of genocide." Moreover, a New York Times/WCBS TV news poll conducted the same year found that 10 percent of all black Americans thought the AIDS virus was "deliberately created in a laboratory in order to infect black people," and 20 percent believed it could be true.[1]

Nor were such beliefs limited to the lay public. Many black health workers, the Times continued, refused to dismiss these fears out of hand. One individual, testifying before the National Commission on AIDS, declared that she considered AIDS a manmade disease "until proven otherwise." Similar suspicions cast a shadow over efforts to control the epidemic.

The attitudes black Americans brought to AIDS were historically constructed. Scientific and medical theories were not the only elements that shaped how blacks viewed this terrifying disease: social, political, religious, and moral conceptions influenced their perceptions and understandings as well.

Above all, many black Americans saw AIDS through the prism of race, which brought more than three and a half centuries of white-black relations into focus. Slavery, sharecropping, peonage, lynchings, Jim Crow laws, disfranchisement, residential segregation, and job discrimination were the substance to which many Afro-Americans reduced all American history, forming a saga of hatred, exploitation, and abuse.

Two readers who found the editors of the New York Times strangely ahistorical drove home this point. M. William Howard, the president of the New York Theological Seminary, was mystified how anyone could think it "astonishing" that many blacks believed AIDS was a form of genocide. To him, such views were "the inevitable result of black people's living in a society in which we are so alienated from the mainstream that many of us believe America will stop at nothing to eliminate us." Another reader thought that the use of words like bizarre to describe black peoples' fears "in and of itself reeks of an insensitivity to the history of blacks in this country and why they would have good reasons to feel conspired against." As proof, the man cited "the Tuskegee experiment of the 1930's."[2] For many blacks, the Tuskegee study became a symbol of their mistreatment by the medical establishment, a metaphor for deceit, conspiracy, malpractice, and neglect, if not outright racial genocide.

Memories of the experiment refused to die. The anger and fears evoked by the Tuskegee study's disclosure in 1972 reappeared a decade later when Bad Blood was published, setting off another round of discussions as a new generation learned about the experiment. Thus, by the time the AIDS epidemic struck America, the Tuskegee study had left many black Americans suspicious of health authorities. Mistrust in the black community deepened as many white Americans expressed attitudes about AIDS victims that were remarkably similar to the beliefs most white Americans shared about syphilitic blacks earlier in the century.

As blacks surveyed their history, the Tuskegee study provided substance for their fears and evidence for their accusations. James Small, a black studies instructor at City College of New York, cited the Tuskegee study as an example of modern-day white oppression. "Our whole relationship to [whites] has been that of [their] practicing genocidal conspiratorial behavior on us," Small declared, "from the whole slave encounter right up to the Tuskegee study." To him, the Tuskegee study provided the proof to which there could be no reply, as it demonstrated how effectively the government could use science to exterminate blacks.[3]

Health officials who worked in black communities reported that the Tuskegee study had spawned a legacy of suspicion and distrust toward public health authorities. Testifying before teh National Commission on AIDS in December 1990, Dr. Mark Smith, a physician from the School of Medicine of Johns Hopkins University in Balitmore, declared that many Afro-Americans felt "alienated from the health care system and the government and ... somewhat cynical about the motives of those who arrive in their communities to help them." The Tuskegee study, he asserted, "provides validation for common suspicions about the ethical even-handedness in the medical research establishment and in the federal government, in particular, when it comes to Black people."[4]

Not surprisingly, then, many health officials encountered difficulties when they tried to study AIDS in black communities. In 1988 federal health authorities had to abandon a planned study of AIDS infections in the District of Columbia. As designed, the scrapped project proposed to ask the residents of a black neighborhood to submit to household blood tests and complete a questionnaire to determine the feasibility of a national survey to gather data on the incidence of AIDS. According to the New York Times, city officials "expressed concern that Washington's black community was being used as a 'guinea pig' in a project that would stigmatize the city and its minority communities."[5]

Despite clear and mounting evidence that the Tuskegee study's legacy of suspicion and distrust was hampering efforts to control AIDS in the black community, public health officials were remarkably slow to admit a problem existed. Asked to comment on the Tuskegee study directly, most health officials declined to defend it and sought to distance themselves from it. Simply put, it was an embarrassment, a relic of the past they preferred not to have mentioned and had just as soon see forgotten.

Other health professionals adopted essentially the same position. Despite the serious questions the Tuskegee study raised about the racial policies, ethical standards, and scientific competence of everyone who participated in the experiment, and despite growing evidence that the experiment had angered many blacks and had left them deeply suspicious of organized medicine, the medical establishment in the United States made little effort to come to grips with the Tuskegee study. No medical association conducted a symposium on the experiment; no medical journal devoted an issue to exploring what might be learned from a wide-ranging examination of the experiment by experts from different fields. Yet the Tuskegee study would not go away. For many blacks it provided the historical lens through which they viewed AIDS.

Stephen B. Thomas and Sandra Crouse Quinn, co-directors of the Minority Health Research Laboratory at the University of Maryland, saw this truth driven home repeatedly. As experts in health education, Thomas and Quinn worked with a variety of groups to plan educational programs to combat AIDS in the black community. In their travels across the country they detected a pattern in the seminars and workshops they conducted on AIDS. Every time the program was opened for discussion someone in the audience invariably brought up the Tuskegee study. Often the individual who did so was a lay person, but not infrequently a health professional raised the subject. And once broached, the Tuskegee study unleashed such outbursts of anger, suspicion, fear, and mistrust that it became difficult to move the discussion back to AIDS education.

Struck by the power of the emotions they were hearing, Thomas and Quinn decided to study the Tuskegee study's legacy in the black community as it related to the AIDS epidemic. Among other things, they found that many health officials who work in black communities "are uncomfortable responding to the issue of genocide and the Tuskegee study." Typically, health officials ignored these issues, a response that often led to "a loss of believability and further alienation."[6]

According to Thomas and Quinn, health officials needed to try a different approach. "One culturally sensitive response would be for public health professionals to discuss the fear of genocide evoked by the AIDS epidemic," they advised. "They must be willing to listen respectfully to community fears, share the facts of the Tuskegee study when it arises as a justification of those fears, and admit to the limitations of science when they do not have all the answers." Above all, Thomas and Quinn advised health officials not to dismiss black peoples' fears out of hand.

In their effort to understand and to chronicle the Tuskegee study's legacy, Thomas and Quinn had to maintain a careful balancing act. On the one hand, they had to describe black fears of genocide sympathetically and to explain why many blacks shared these fears; on the other hand, they had to make it clear they did not believe AIDS was a white conspiracy to exterminate blacks. Separating himself from conspiracy thinking, Thomas called the genocide theory a "disaster myth," an explanation developed by people who needed to make sense of a calamity that had befallen them. By providing psychic comfort, "disaster myths" enabled people to function after something catastrophic occurred, but Thomas felt compelled to dispel the myth of genocidal conspiracy because it interfered with efforts to control AIDS. "There are Black professionals with Ph.D.'s and M.D.'s behind their names who say safe sex [with condoms] equals a lower Black birth rate, which equals Black genocide. This is ridiculous," he thundered.[7]

While most black professionals denounced such theories as nonsense, many shared Thomas's concern that conspiracy theories were impeding treatment and educational programs to combat AIDS. "It's dangerous to be preoccupied with these theories when we need to work on containing the disease," declared Dr. Wayne Greaves, chief of infectious diseases at Howard University Hospital. "I'm too busy worrying about caring for sick patients and educating people about AIDS to get caught up in this kind of inane rhetoric." Dr. Alvin F. Poussaint, associate professor of psychiatry at Harvard Medical School, stated the matter more bluntly: "If we say that AIDS is a conspiracy to kill us off, it relieves us of any responsibility for helping to stop the disease's spread."

Most leaders in the black community endorsed this view. When Newsweek inquired about the conspiracy theories that were sweeping the black community, none of the black academics, politicians, and civic activists interviewed in 1992 subscribed to the genocide theory, at least not in the literal sense. Yet many educated and thoughtful blacks detected a pattern of neglect aimed at American cities that smacked of racism. "You don't need five people in a room saying we're going to jam black people. But if you decide cities are last on your list, and 60 percent of African-Americans live in cities, you have targeted African-Americans," Julianne Malveaux, an economist and writer based in San Francisco, stated. "There is deliberate disregard," she added. "I'm not willing to call it a conspiracy, [but] this is neglect that is not benign."[8]

Lorene Cary, a Newsweek contributing editor, suggested that the problem reached beyond the cities to include blacks everywhere. "We Americans continue to value the lives and humanity of some groups more than the lives and humanity of others. It is not paranoia, it is our historical legacy and present fact," she insisted, adding that such thinking "influences the way we spend our public money and explains how we can read the staggering statistics on black Americans' infant mortality, youth mortality, and mortality in middle and old age, and not be moved to action."[9]

As a symbol of racism and medical malfeasance, the Tuskegee study may never move the nation to action, but it can change the way Americans view illness. Hidden within the anger and anguish of those who decry the experiment is a plea for government authorities and medical officials to hear the fears of people whose faith has been damaged, to deal with their concerns directly, and to acknowledge the link between public health and community trust. Government authorities and medical officials must strive to cleanse medicine of social infections by eliminating any type of racial or moral stereotyping of people or their illnesses. They must seek to build a health system that will make adequate health care available to all Americans. Anything less will leave some groups at risk, as happened at Tuskegee.

References

1. New York Times, 12 May 1992.

2. New York Times, 29 May 1992.

3. Karen Grisby Bates, "AIDS: Is It Genocide?" Essence, no. 21, September 1990.

4. Stephen B. Thomas and Sandra Crouse Quinn, "The Tuskegee Syphilis Study, 1932 to 1972: Implications for HIV Education and AIDS Risk Education Programs in the Black Community," American Journal of Public Health 81, no. 11 (1991): 1498-1505, at 1498-99.

5. New York Times, 17 August 1989.

6. Thomas and Quinn, "Tuskegee Study," p. 1503.

7. Bates, "AIDS: Is It Genocide?" p. 78.

8. Newsweek, 6 April 1992, p. 21.

9. Lorene Cary, "Why It's Not Just Paranoia: An American History of 'Plans' for Blacks," Newsweek, 6 April 1992, p. 23.
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Title Annotation:Twenty Years After: The Legacy of the Tuskegee Syphilis Study
Author:Jones, James H.
Publication:The Hastings Center Report
Date:Nov 1, 1992
Words:2224
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