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The Dangers of DifferenceAuthor(s): Patricia A. KingSource: The Hastings Center Report, Vol. 22, No. 6, (Nov. – Dec., 1992), pp. 35-38Published by: The Hastings CenterStable URL: http://www.jstor.org/stable/3562948Accessed: 15/04/2008 13:19

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Hastings Center Report, November-December 1992 Hastings Center Report, November-December 1992

appraise "research" as opposed to "experimental therapies," for we draw lines between these categories more sharply than the reality makes desirable.

appraise "research" as opposed to "experimental therapies," for we draw lines between these categories more sharply than the reality makes desirable.

t has been sixty years since the beginning of the Tuskegee syphilis experi- ment and twenty years since

its existence was disclosed to the American public. The social and ethical issues that the experiment poses for medicine, particularly for medicine's relationship with African Americans, are still not broadly un- derstood, appreciated, or even re- membered.' Yet a significant aspect of the Tuskegee experiment's legacy is that in a racist society that incor- porates beliefs about the inherent in- feriority of African Americans in contrast with the superior status of whites, any attention to the question of differences that may exist is likely to be pursued in a manner that bur- dens rather than benefits African Americans.

The Tuskegee experiment, which involved approximately 400 males with late-stage, untreated syphilis and approximately 200 controls free of the disease, is by any measure one of the dark pages in the history of Amer- ican medicine. In this study of the natural course of untreated syphilis, the participants did not give informed consent. Stunningly, when penicillin was subsequently developed as a treat- ment for syphilis, measures were taken to keep the diseased partici- pants from receiving it.

Obviously, the experiment provides a basis for the exploration of many ethical and social issues in medicine, including professional ethics,2 the limitations of informed consent as a means of protecting research sub- jects, and the motives and methods used to justify the exploitation of persons who live in conditions of

t has been sixty years since the beginning of the Tuskegee syphilis experi- ment and twenty years since

its existence was disclosed to the American public. The social and ethical issues that the experiment poses for medicine, particularly for medicine's relationship with African Americans, are still not broadly un- derstood, appreciated, or even re- membered.' Yet a significant aspect of the Tuskegee experiment's legacy is that in a racist society that incor- porates beliefs about the inherent in- feriority of African Americans in contrast with the superior status of whites, any attention to the question of differences that may exist is likely to be pursued in a manner that bur- dens rather than benefits African Americans.

The Tuskegee experiment, which involved approximately 400 males with late-stage, untreated syphilis and approximately 200 controls free of the disease, is by any measure one of the dark pages in the history of Amer- ican medicine. In this study of the natural course of untreated syphilis, the participants did not give informed consent. Stunningly, when penicillin was subsequently developed as a treat- ment for syphilis, measures were taken to keep the diseased partici- pants from receiving it.

Obviously, the experiment provides a basis for the exploration of many ethical and social issues in medicine, including professional ethics,2 the limitations of informed consent as a means of protecting research sub- jects, and the motives and methods used to justify the exploitation of persons who live in conditions of

Patricia A. Kng is professor of law, George- town University Law Center, Washington, D.C.

Patricia A. King, "The Dangers of Difference," Hastings CenterReport22, no. 6 (1992): 35-38.

Patricia A. Kng is professor of law, George- town University Law Center, Washington, D.C.

Patricia A. King, "The Dangers of Difference," Hastings CenterReport22, no. 6 (1992): 35-38.

Finally, the Human Genome Proj- ect will bring to the forefront of human consciousness awareness of the range of variability not only among individuals but among

Finally, the Human Genome Proj- ect will bring to the forefront of human consciousness awareness of the range of variability not only among individuals but among

The Dangers of Difference

by Patricia A. King

The Dangers of Difference

by Patricia A. King

severe economic and social disad- vantage. At bottom, however, the Tuskegee experiment is different from other incidents of abuse in clini- cal research because all the partici- pants were black males. The racism that played a central role in this trag- edy continues to infect even our cur- rent well-intentioned efforts to reverse the decline in health status of African Americans.3

Others have written on the scien- tific attitudes about race and heredity that flourished at the time that the Tuskegee experiment was conceived.4 There has always been widespread in- terest in racial differences between blacks and whites, especially differ- ences that related to sexual matters. These perceived differences have often reinforced and justified differ- ential treatment of blacks and whites, and have done so to the detriment of blacks. Not surprisingly, such assump- tions about racial differences pro- vided critical justification for the Tuskegee experiment itself.

Before the experiment began a Norwegian investigator had already undertaken a study of untreated syph- ilis in whites between 1890 and 1910. Although there had also been a fol- low-up study of these untreated patients from 1925 to 1927, the origi- nal study was abandoned when ar- senic therapy became available. In light of the availability of therapy a substantialjustification for replicating a study of untreated syphilis was re-

severe economic and social disad- vantage. At bottom, however, the Tuskegee experiment is different from other incidents of abuse in clini- cal research because all the partici- pants were black males. The racism that played a central role in this trag- edy continues to infect even our cur- rent well-intentioned efforts to reverse the decline in health status of African Americans.3

Others have written on the scien- tific attitudes about race and heredity that flourished at the time that the Tuskegee experiment was conceived.4 There has always been widespread in- terest in racial differences between blacks and whites, especially differ- ences that related to sexual matters. These perceived differences have often reinforced and justified differ- ential treatment of blacks and whites, and have done so to the detriment of blacks. Not surprisingly, such assump- tions about racial differences pro- vided critical justification for the Tuskegee experiment itself.

Before the experiment began a Norwegian investigator had already undertaken a study of untreated syph- ilis in whites between 1890 and 1910. Although there had also been a fol- low-up study of these untreated patients from 1925 to 1927, the origi- nal study was abandoned when ar- senic therapy became available. In light of the availability of therapy a substantialjustification for replicating a study of untreated syphilis was re-

groups. To acknowledge those differ- ences, while insisting on their irrele- vance to respect for individual dignity and equality of right, is a challenge we shall have to face.

groups. To acknowledge those differ- ences, while insisting on their irrele- vance to respect for individual dignity and equality of right, is a challenge we shall have to face.

quired. The argument that provided critical support for the experiment was that the natural course of un- treated syphilis in blacks and whites was not the same.5 Moreover, it was thought that the differences between blacks and whites were not merely biological but that they extended to psychological and social responses to the disease as well. Syphilis, a sexually transmitted disease, was perceived to be rampant among blacks in part be- cause blacks-unlike whites-were not inclined to seek or continue treat- ment for syphilis.

quired. The argument that provided critical support for the experiment was that the natural course of un- treated syphilis in blacks and whites was not the same.5 Moreover, it was thought that the differences between blacks and whites were not merely biological but that they extended to psychological and social responses to the disease as well. Syphilis, a sexually transmitted disease, was perceived to be rampant among blacks in part be- cause blacks-unlike whites-were not inclined to seek or continue treat- ment for syphilis.

The Dilemma of Difference

In the context of widespread belief in the racial inferiority of blacks that surrounded the Tuskegee experi- ment, it should not come as a surprise that the experiment exploited its sub- jects. Recognizing and taking account of racial differences that have histori- cally been utilized to burden and ex- ploit African Americans poses a dilemma.6 Even in circumstances where the goal of a scientific study is to benefit a stigmatized group or per- son, such well-intentioned efforts may nevertheless cause harm. If the racial difference is ignored and all groups or persons are treated similarly, unin- tended harm may result from the failure to recognize racially corre- lated factors. Conversely, if differ- ences among groups or persons are recognized and attempts are made to respond to past injustices or special burdens, the effort is likely to rein- force existing negative stereotypes that contributed to the emphasis on racial differences in the first place.

This dilemma about difference is particularly worrisome in medicine. Because medicine is pragmatic, it will recognize racial differences if doing so will promote health goals. As a con- sequence, potential harms that might result from attention to racial differ- ences tend to be overlooked, min-

The Dilemma of Difference

In the context of widespread belief in the racial inferiority of blacks that surrounded the Tuskegee experi- ment, it should not come as a surprise that the experiment exploited its sub- jects. Recognizing and taking account of racial differences that have histori- cally been utilized to burden and ex- ploit African Americans poses a dilemma.6 Even in circumstances where the goal of a scientific study is to benefit a stigmatized group or per- son, such well-intentioned efforts may nevertheless cause harm. If the racial difference is ignored and all groups or persons are treated similarly, unin- tended harm may result from the failure to recognize racially corre- lated factors. Conversely, if differ- ences among groups or persons are recognized and attempts are made to respond to past injustices or special burdens, the effort is likely to rein- force existing negative stereotypes that contributed to the emphasis on racial differences in the first place.

This dilemma about difference is particularly worrisome in medicine. Because medicine is pragmatic, it will recognize racial differences if doing so will promote health goals. As a con- sequence, potential harms that might result from attention to racial differ- ences tend to be overlooked, min-

35 35

Hastings Center Report, November-December 1992

imized, or viewed as problems beyond the purview of medicine.

The question ofwhether (and how) to take account of racial differences has recently been raised in the con- text of the current AIDS epidemic. The participation of African Ameri- cans in clinical AIDS trials has been disproportionately small in compari- son to the numbers of African Amer- icans who have been infected with the Human Immunodeficiency Virus. Be- cause of the possibility that African Americans may respond differently to drugs being developed and tested to combat AIDS,7 those concerned about the care and treatment of AIDS in the African American community have called for greater participation by African Americans in these trials. Ironically, efforts to address the prob- lem of underrepresentation must cope with the enduring legacy of the Tuskegee experiment-the legacy of suspicion and skepticism toward med- icine and its practitioners among Afri- can Americans.8

In view of the suspicion Tuskegee so justifiably engenders, calls for in- creased participation by African Americans in clinical trials are worri- some. The question of whether to tolerate racially differentiated AIDS research testing of new or innovative therapies, as well as the question of what norms should govern partici- pation by African Americans in clini- cal research, needs careful and thoughtful attention. A generic ex- amination of the treatment of racial differences in medicine is beyond the scope of this article. However, I will describe briefly what has occurred since disclosure of the Tuskegee ex- periment to point out the dangers I find lurking in our current policies.

Inclusion and Exclusion

In part because of public outrage concerning the Tuskegee experi- ment,9 comprehensive regulations governing federal research using human subjects were revised and sub- sequently adopted by most federal agencies.' An institutional review board (IRB) must approve clinical re- search involving human subjects, and IRB approval is made contingent on review of protocols for adequate pro- tection of human subjects in accord-

ance with federal criteria. These cri- teria require among other things that an IRB ensure that subject selection is "equitable." The regulations further provide that:

[i]n making this assessment the IRB should take into account the purposes of the research and the setting in which the research will be conducted and should be particu- larly cognizant of the special prob- lems of research involving vulnera- ble populations, such as women, mentally disabled persons, or eco- nomically or educationally disad- vantaged persons." The language of the regulation

makes clear that the concern prompting its adoption was the pro- tection of vulnerable groups from ex- ploitation. The obverse problem- that too much protection might pro- mote the exclusion or underrep- resentation of vulnerable groups, in- cluding African Americans-was not at issue. However, underinclusion can raise as much of a problem of equity as exploitation.'2

A 1990 General Accounting Office study first documented the extent to which minorities and women were un- derrepresented in federally funded research. In response, in December 1990 the National Institutes of Health, together with the Alcohol, Drug Abuse and Mental Health Ad- ministration, directed that minorities and women be included in study populations,

so that research findings can be of benefit to all persons at risk of the disease, disorder or condition under study; special emphasis should be placed on the need for inclusion of minorities and women in studies of diseases, dis- orders and conditions that dis- proportionately affect them.13

If minorities are not included, a clear and compelling rationale must be submitted.

The new policy clearly attempts to avoid the perils of overprotection, but it raises new concerns. The policy must be clarified and refined if it is to meet the intended goal of ensuring that research findings are of benefit to all. There are at least three reasons for favoring increased representation

of African Americans in clinical trials. The first is that there may be biologi- cal differences between blacks and whites that might affect the applicabil- ity of experimental findings to blacks, but these differences will not be no- ticed if blacks are not included in sufficient numbers to allow the detec- tion of statistically significant racial differences. The second reason is that race is a reliable index for social con- ditions such as poor health and nutri- tion, lack of adequate access to health care, and economic and social dis- advantage that might adversely affect potential benefits of new interven- tions and procedures. If there is indeed a correlation between minor- ity status and these factors, then Afri- can Americans and all others with these characteristics will benefit from new information generated by the re- search. The third reason is that the burdens and benefits of research should be spread across the popula- tion regardless of racial or ethnic sta- tus.'4 Each of these reasons for urging that representation of minorities be increased has merit. Each of these justifications also raises concern, how- ever, aboutwhether potential benefits will indeed be achieved.

The thirdjustification carries with it the obvious danger that the special needs or problems generated as a re- sult of economic or social conditions associated with minority status may be overlooked and that, as a result, Afri- can Americans and other minorities will be further disadvantaged. The other two justifications are problem- atic and deserve closer examination. They each assume that there are either biological, social, economic, or cultural differences between blacks and whites.

The Way Out of the Dilemma

Understanding how, or indeed whether, race correlates with disease is a very complicated problem. Race itself is a confusing concept with both biological and social connotations. Some doubt whether race has biologi- cal significance at all.15 Even if race is a biological fiction, however, its social significance remains.16 As Bob Blau- ner points out, "Race is an essentially political construct, one that translates our tendency to see people in terms

36

Hastings Center Report, November-December 1992

of their color or other physical at- tributes into structures that make it likely that people will act for or against them on such a basis."17

In the wake of Tuskegee and, in more recent times, the stigma and discrimination that resulted from screening for sickle cell trait (a genet- ic condition that occurs with greater frequency among African Ameri- cans), researchers have been reluc- tant to explore associations between race and disease. There is increasing recognition, however, of evidence of heightened resistance or vulnerability to disease along racial lines.18 Indeed, sickle cell anemia itself substantiates the view that biological differences may exist. Nonetheless, separating myth from reality in determining the cause of disease and poor health sta- tus is not easy. Great caution should be exercised in attempting to validate biological differences in susceptibility to disease in light of this society's past experience with biological differ- ences. Moreover, using race as an index for other conditions that might influence health and well-being is also dangerous. Such practices could em- phasize social and economic differ- ences that might also lead to stigma and discrimination.

If all the reasons for increasing minority participation in clinical re- search are flawed, how then can we promote improvement in the health status of African Americans and other minorities through participation in clinical research while simultaneously minimizing the harms that might flow from such participation? Is it possible to work our way out of this dilemma?

An appropriate strategy should have as its starting point the defeasible presumption that blacks and whites are biologically the same with respect to disease and treatment. Presump- tions can be overturned of course, and the strategy should recognize the possibility that biological differences in some contexts are possible. But the presumption of equality acknowl- edges that historically the greatest harm has come from the willingness to impute biological differences rather than the willingness to over- look them. For some, allowing the presumption to be in any way defeasible is troubling. Yet I do not believe that fear should lead us to

ignore the possibility of biologically differentiated responses to disease and treatment, especially when the goal is to achieve medical benefit.

It is well to note at this point the caution sounded by Hans Jonas. He wrote, "Of the new experimentation with man, medical is surely the most legitimate; psychological, the most dubious; biological (still to come), the most dangerous."'9 Clearly, priority should be given to exploring the possible social, cultural, and en- vironmental determinants of disease before targeting the study of hypothe- ses that involve biological differences between blacks and whites. For ex- ample, rather than trying to deter- mine whether blacks and whites re- spond differently to AZT, attention should first be directed to learning whether response to AZT is in- fluenced by social, cultural, or en- vironmental conditions. Only at the point where possible biological dif- ferences emerge should hypotheses that explore racial differences be considered.

A finding that blacks and whites are different in some critical aspect need not inevitably lead to increased dis- crimination or stigma for blacks. If there indeed had been a difference in the effects of untreated syphilis be- tween blacks and whites such infor- mation might have been used to pro- mote the health status of blacks. But the Tuskegee experiment stands as a reminder that such favorable out- comes rarely if ever occur. More often, either racist assumptions and stereo- types creep into the study's design, or findings broken down by race be- come convenient tools to support policies and behavior that further dis- advantage those already vulnerable.

Referes

1. For earlier examples of the use of African Americans as experimental sub- jects see Todd L. Savitt, "The Use of Blacks for Medical Experimentation and Dem- onstration in the Old South," Journal of Southern History 48, no. 3 (1982): 331-48.

2. David J. Rothman, "Were Tuskegee & Willowbrook 'Studies in Nature'?" Has- tings CenterReport 12, no. 2 (1982): 5-7.

3. For an in-depth examination of the health status of African Americans see WoodrowJones, Jr., and Mitchell F. Rice, eds. Health Care Issues in Black America:

Policies, Problems, and Prospects (New York: Greenwood Press, 1987).

4. See for example Allan M. Brandt, "Racism and Research: The Case of the Tuskegee Syphilis Study," Hastings Center Report8, no. 6 (1978): 21-29; andJames H. Jones, Bad Blood: The Tuskegee Syphilis Ex- periment (New York: Free Press, 1981).

5.Jones, Bad Blood, p. 106. 6. Martha Minow, Making All the Differ-

ence: Inclusion, Exclusion, and American Law (Ithaca, N.Y: Cornell University Press, 1990).

7. Wafaa El-Sadr and Linnea Capps, "The Challenge of Minority Recruitment in Clinical Trials for AIDS,"JAMA 267, no. 7 (1992): 954-57.

8. See for example Stephen B. Thomas and Sandra Crouse Quinn, "Public Health Then and Now," AmericanJournal of Public Health 81, no. 11 (1991): 1498-1505; Henry C. Chinn, Jr., "Remember Tuskegee," New York Times, 29 May 1992.

9. Tuskegee Syphilis Study Ad Hoc Ad- visory Panel, Final Report of the Tuskegee Syphilis Study Ad Hoc Advisory Panel (Wash- ington, D.C.: U.S. Department of Health, Education and Welfare, Public Health Service, 1973).

10. Federal Policy for the Protection of Human Subjects; Notices and Rules, Fed- eralRegister56, no. 117 (1991): 28002.

11.45 Code ofFederal Regulations ?46.111 (a) (3).

12. This problem is discussed in the context of research in prisons in Stephen E. Toulmin, "The National Commission on Human Experimentation: Procedures and Outcomes," in Scientific Controversies: Case Studies in the Resolution and Closure of Disputes in Science and Technology, ed. H. Tristram Engelhardt, Jr. and Arthur L. Caplan (New York: Cambridge University Press, 1987), pp. 602-6.

13. National Institutes of Health and Alcohol, Drug Abuse and Mental Health Administration, "Special Instructions to Applicants Using Form PHS 398 Regard- ing Implementation of the NIH/AD- AMHA Policy concerning Inclusion of Women and Minorities in Clinical Re- search Study Populations," December 1990.

14. Arthur L. Caplan, "Is There a Duty to Serve as a Subject in Biomedical Re- search?" IRB: A Review of Human Subjects Research 6, no. 5 (1984): 1-5.

15. SeeJ. W. Green, Cultural Awareness in the Human Services (Englewood Cliffs, NJ.: Prentice-Hall, 1982), p. 59; Bob Blau- ner, "Talking Past Each Other: Black and White Languages of Race," American Pros- pect61, no. 10 (1992): 55-64.

16. Patricia A. King, "The Past as Pro- logue: Race, Class, and Gene Discrimina- tion," in UsingEthics and Law as Guides, ed. GeorgeJ. Annas and Sherman Elias (New

37

Hastings Center Report, November-December 1992 Hastings Center Report, November-December 1992

York: Oxford University Press, 1992), pp. 94-111.

17. Blauner, "Talking Past Each Other," p. 16.

18. See for example James E. Bowman and Robert E Murray, Jr., Genetic Variation and Disorders in People ofAfrican Origin (Bal- timore, Md.: Johns Hopkins University

York: Oxford University Press, 1992), pp. 94-111.

17. Blauner, "Talking Past Each Other," p. 16.

18. See for example James E. Bowman and Robert E Murray, Jr., Genetic Variation and Disorders in People ofAfrican Origin (Bal- timore, Md.: Johns Hopkins University

o scientific experiment in- N flicted more damage on the

collective psyche of black Americans than the Tuske-

gee study. AfterJean Heller broke the story in 1972, news of the tragedy spread in the black community. Con- fronted 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. Con- sequently, when a terrifying new plague swept the land in the 1980s and 1990s, the Tuskegee study pre- disposed 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 sur- vey of black church members in 1990 that revealed "an astonishing 35 per- cent 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.'

Nor were such beliefs limited to the lay public. Many black health workers, the Times continued, refused to dis- miss these fears out of hand. One

o scientific experiment in- N flicted more damage on the

collective psyche of black Americans than the Tuske-

gee study. AfterJean Heller broke the story in 1972, news of the tragedy spread in the black community. Con- fronted 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. Con- sequently, when a terrifying new plague swept the land in the 1980s and 1990s, the Tuskegee study pre- disposed 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 sur- vey of black church members in 1990 that revealed "an astonishing 35 per- cent 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.'

Nor were such beliefs limited to the lay public. Many black health workers, the Times continued, refused to dis- miss these fears out of hand. One

James H.Jones is associateprofessorofhistory at the University of Houston.

Excerpted from "AIDS: Is It Genocide?" from the forthcoming 1993 new and expanded edition of Bad Blood: The Tuskegee Syphilis Experiment by James H.Jones. Reprinted with the permission of The Free Press, a division of Macmillan, Inc. All rights reserved.

James H.Jones is associateprofessorofhistory at the University of Houston.

Excerpted from "AIDS: Is It Genocide?" from the forthcoming 1993 new and expanded edition of Bad Blood: The Tuskegee Syphilis Experiment by James H.Jones. Reprinted with the permission of The Free Press, a division of Macmillan, Inc. All rights reserved.

Press, 1981); Warren W. Leary, "Uneasy Doctors Add Race-Consciousness to Diag- nostic Tools," New York Times, 15 Septem- ber 1990.

19. HansJonas, "Philosophical Reflec- tions on Experimenting with Human Sub- jects," in Experimentation with Human Sub- jects, ed. Paul A. Freund (New York:

Press, 1981); Warren W. Leary, "Uneasy Doctors Add Race-Consciousness to Diag- nostic Tools," New York Times, 15 Septem- ber 1990.

19. HansJonas, "Philosophical Reflec- tions on Experimenting with Human Sub- jects," in Experimentation with Human Sub- jects, ed. Paul A. Freund (New York:

The Tuskegee Legacy

AIDS and the Black Community

by James H. Jones

The Tuskegee Legacy

AIDS and the Black Community

by James H. Jones

individual, testifying before the National Commission on AIDS, de- clared that she considered AIDS a man- made disease "until proven otherwise." Similar suspicions cast a shadow over efforts to control the epidemic.

The attitudes black Americans brought to AIDS were historically con- structed. Scientific and medical theo- ries were not the only elements that shaped how blacks viewed this terrify- ing disease: social, political, religious, and moral conceptions influenced their perceptions and understand- ings 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 segre- gation, and job discrimination were the substance to which many Afro- Americans reduced all American his- tory, forming a saga of hatred, exploi- tation, and abuse.

Two readers who found the editors of the New York Times strangely ahis- torical drove home this point. M. Wil- liam Howard, the president of the New York Theological Seminary, was

individual, testifying before the National Commission on AIDS, de- clared that she considered AIDS a man- made disease "until proven otherwise." Similar suspicions cast a shadow over efforts to control the epidemic.

The attitudes black Americans brought to AIDS were historically con- structed. Scientific and medical theo- ries were not the only elements that shaped how blacks viewed this terrify- ing disease: social, political, religious, and moral conceptions influenced their perceptions and understand- ings 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 segre- gation, and job discrimination were the substance to which many Afro- Americans reduced all American his- tory, forming a saga of hatred, exploi- tation, and abuse.

Two readers who found the editors of the New York Times strangely ahis- torical drove home this point. M. Wil- liam Howard, the president of the New York Theological Seminary, was

George Braziller, 1970), p. 1. Recent con-

troversy in genetic research makesJonas's

warning particularly timely. See Daniel Goleman, "New Storm Brews on Whether Crime Has Roots in Genes," New York Times, 15 September 1992.

George Braziller, 1970), p. 1. Recent con-

troversy in genetic research makesJonas's

warning particularly timely. See Daniel Goleman, "New Storm Brews on Whether Crime Has Roots in Genes," New York Times, 15 September 1992.

mystified how anyone could think it "astonishing" that many blacks be- lieved AIDS was a form of genocide. To him, such views were "the inevi- table 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 noth- ing 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 insensitiv- ity 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 mistreat- ment by the medical establishment, a metaphor for deceit, conspiracy, mal- practice, and neglect, if not outright racial genocide.

Memories of the experiment re- fused to die. The anger and fears evoked by the Tuskegee study's disclo- sure in 1972 reappeared a decade later when Bad Blood was published, setting off another round of discus- sions as a new generation learned about the experiment. Thus, by the time the AIDS epidemic struck Amer- ica, the Tuskegee study had left many black Americans suspicious of health authorities. Mistrust in the black com- munity 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 stud- ies instructor at City College of New York, cited the Tuskegee study as an example ofmodern-daywhite oppres- sion. "Our whole relationship to [whites] has been that of [their] prac-

mystified how anyone could think it "astonishing" that many blacks be- lieved AIDS was a form of genocide. To him, such views were "the inevi- table 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 noth- ing 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 insensitiv- ity 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 mistreat- ment by the medical establishment, a metaphor for deceit, conspiracy, mal- practice, and neglect, if not outright racial genocide.

Memories of the experiment re- fused to die. The anger and fears evoked by the Tuskegee study's disclo- sure in 1972 reappeared a decade later when Bad Blood was published, setting off another round of discus- sions as a new generation learned about the experiment. Thus, by the time the AIDS epidemic struck Amer- ica, the Tuskegee study had left many black Americans suspicious of health authorities. Mistrust in the black com- munity 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 stud- ies instructor at City College of New York, cited the Tuskegee study as an example ofmodern-daywhite oppres- sion. "Our whole relationship to [whites] has been that of [their] prac-

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