Editorials
beverage use. Alcohol Clin Exp Res. 1983;7,4 (fall):372-377. 5. Weissman A, Anderson R. Characteristics of health plan membership. In: Somers AR, ed. The Kaiser-Pennanente Medical Care Prgram: One Valid Solution to the Problem of Health Care Delivery in the United
States. NY: The Commonwealth Fund; 1971,33-43. Proceedings of a symposium sponsored by the Kaiser-Permanente Medical Care Program, The Commonwealth Fund, and the Association of American Medical Colleges, Oakland, Calif, March 1971.
6. Hiatt RA, Dales LG, Friedman GD, Hunkeler EM. Frequency of urolithiasis in a prepaid medical care program. Am JEpidemioL 1982;114:225-265. 7. Murphy RS. At last-a view of Hispanic health and nutrition status. Am J Publc Health. 1990;80:1429-1430.
History, Ethics, and Politics in AIDS Prevention Research There are certain properties of the human immunodeficiency virus (HIV) that make the prevention of infection difficult. A very long latency period from initial infection to the development of symptoms means that many persons remain infectious for years without realizing their condition. The probability of heterosexual transmission (with or without condoms) is very difficult to estimate, which has led to great public confusion about the level of risk for non-drug-injecting heterosexuals. These biotechnical problems are minor, however, compared with some of the political/ethical problems surrounding the AIDS epidemic in the United States. Two articles in this issue of the journal provide good illustrations of these political/ethical problems. Thomas and Quinn's1 essay on the implications of the Tuskegee Syphilis Study for AIDS prevention highlights the historically wellfounded mistrust by many African Americans of public health authorities in the United States. Public health officials must not assume that their efforts will be viewed as good-faith attempts to reduce AIDS in communities of color. (For specific examples and additional discussion of how perceptions of racial prejudice have affected AIDS prevention efforts, see Des Jarlais et al.2) Although the Tuskegee study was hardly the only cause of this distrust, it has come to symbolize unethical treatment of the poor and powerless by health authorities in the United States. It appears that this study has become an emotionally powerful symbol although knowledge of the specific historical details is not widespread. One specific detail has disturbing implications for the current situation: the research for the Tuskegee study was initiated in the absence of adequate funding to provide needed treatment. We have not solved our racial problems with respect to public health policy and practice in the United States, and we may be about to repeat mistakes generated (at least in part) by a lack of funding for what should be considered public health necessities. Moreover, distrust of public health authorities is clearly not confined to Afri-
November 1991, Vol. 81, No. 11
can Americans. Indeed, throughout the AIDS epidemic, intense distrust has been a constant theme in the relationship between "persons-at-increased-risk" for AIDS and public health authorities. Some gay men have been suspicious both of public health officials' attempts to close bathhouses and of federal officials' perceived unwillingness to commit sufficient resources to stop HIV transmission or to develop effective therapies for HIV infection.3 Illicit drug users have been quoted in the mass media as saying that the lack of legal sterile injection equipment is because "they want us to die."4 A heroin user in one of our own research studies stated that he would not participate in an official syringe exchange program because he believed that the govenmment would deliberately put the AIDS virus into the syringes to be distributed to drug injectors. (This subject was a college-educated white man.) As for the larger issue of AIDS among African Americans, there are numerous factors that need to be considered in addition to the distrust of public health officials. African Americans are a highly stigmatized group in US society, and AIDS is a highly stigmatized disease. The spread of AIDS in African-American communities clearly has the potential to reinforce stigmatization of this group. This fear has created great difficulties in mobilizing African-American responses to the threat of AIDS.5 Beny Primm summarized some of these difficulties in a statement at the First National Conference on AIDS among Minorities: "Ifyou do something now, you will be accused of racism, but if you do nothing now, in the future you will be accused of genocide." The situation is made even more complicated because African Americans are deeply divided among themselves as to appropriate AIDS prevention strategies. As noted in the Anderson6 article, the implementation of a syringe exchange program in New York City led to intense criticism of the health commissioner and mayor by African Americans, including charges of "genocide." Subsequently, the first African-American mayor elected in
New York promptly closed the syringe exchange program. Yet in contrast, the first African-American mayor of New Haven, Conn, is a public champion of the syringe exchange program in that city.7 It is unclear which spokespersons within the African-American community truly represent those at greatest risk of contracting AIDS: men having sex with other men, men and women who share drug injection equipment, or the sexual partners and children ofthe drug injectors. Indeed, with the exception of men who have identified themselves as being gay, it is generally unclearwho can speak for persons at increased risk of HIV infection in the United States. Anderson's description of the brief history of the official New York City syringe exchange study aptly illustrates the practical and ethical problems of conducting AIDS prevention research in a highly politicized environment. On a methodological level, Anderson's paper is partly based on accounts of the syringe exchange in the print media. From our own participation in the events of the syringe exchange controversy, we can attest that the media's description of the syringe exchange program tended to present both sides of the debate in an oversimplified form. In particular, the arguments of persons supporting research on syringe exchange were often reduced to their statements about potential future benefits of syringe exchange, so that there would be a direct symmetry with statements about potential harm made by opponents of such programs. This selective use of quotations from interviews to provide more dramatic contrast in a news story was also consistent with the process of justifying the use of public resources for research studies with arguments often simplistically reduced to "promises" ofthe positive outcomes from the studies. The proponents of syringe exchange research in New York City were
Editor's Note. See related articles by Thomas and Quinn on page 1498 and by Anderson on page 1506. American Journal of Public Health 1393
Editora
fiully aware that the media had these distorting effects on political debate, but they were not able to correct them. The media accounts of the positions taken by proponents of the research do, however, greatly underestimate the extent to which the proponents were arguing for the need to conduct research vs the value of providing syringe exchange as an immediate public health service in the city. We suspect that reliance on this distorted media account also led Anderson to question the ethics of having a comparison group in the study who would not have easy access to the syringe exchange. (For a more general analysis of media coverage of AIDS among intravenous drug users in the United States, see Des Jarlais et al.8) On a substantive level, there are additional considerations to be added to Anderson's account. First, we should acknowledge the personal and professional courage shown by Mayor Koch and Health Commissioners Sencer and Joseph in implementing the highly controversial syringe exchange program. These men subjected themselves to bitter personal attacks and the possible loss of their jobs to implement a program that would directly benefit the most disenfranchised group in the city. Second, Anderson's account gives little attention to purely fortuitous factors. Had Koch been re-elected mayor, the syringe exchange research program would have been expanded rather than terminated. (Koch's position in support of syringe exchange research undoubtedly hurt him in his re-election campaign, but was at most a minor issue during his primary contest with Dinkins.) Although Anderson correctly concludes that there is no "official" needle exchange program in New York City today, it must also be noted that, for the last several years, members of ACI-UP, the AIDS Brigade, and others have been operating underground syringe exchanges in New York City. These syringe exchanges are located in high drug-use areas of the city and have, in fact, been providing services to many more drug injectors than were ever reached by the city's official program. Ten of these service providers managed to get themselves arrested hoping that a trial would force the city government to re-examine its position on syringe exchanges. The judge did find for the public health necessity defense and delivered a not guilty verdict. The outcome of this trial, in combination with other factors-the recent results from the New Haven syringe exchange research, public protest by AIDS service
1394 American Journal of Public Health
providers over the City's antibleach distribution policy, and the appointment of a new acting health commissioner-has led the city government to reconsider both its antibleach and anti-syringe exchange policies. Moreover, the recent report of the United States National Commission on AIIDS,9 recommending legal access to sterile drug-injection equipment, has focused some national attention on these issues. Because of our long and often painfil experience with AIDS/illicit drug-use policy debates, we predict some increased flexibility at both the city and national level, but without expecting breakthrough radical changes. From the optimism needed to sustain prolonged efforts in this area, we also predict that both the city and the nation will continue to re-examine these policy issues until they arrive at the policies that actually do protect the public health. The AIDS/HIV epidemic among drug injectors, their sexual partners, and their children is simply too important a public health problem to permit misinformed and often counterproductive policies to be continued indefinitely. Better policies must be guided by more than political acceptability. They must also lead to reduced use of illicit drugs, reduced sharing of drug-injection equipment, and reduced heterosexual and perinatal transmission of HIV. Current research indicates that these have been proven to be complementaly rather than contradictory goals.10 To be sure, deternining the actual long-term effects of AIDS/drug-use policies will require further research, and the results from more "rigorous" research are likely to provide better policy guidance. Neither the Thomas and Quinn nor the Anderson article discusses the prior-and
overriding-ethical requirement to conduct research on important but controversial topics in public health. Conducting research on controversial topics is seldom easy. The studies are usually technically difficult, and there are sensitive ethical and cultural problems to be addressed. Funding may be difficult to obtain; to date, the federal government has refused to fund syringe exchange research and major surveys of sexual behavior. Researchers can expect bitter personal attacks even for proposing studies. They can also expect that, whatever their ultimate findings might be, the results will undergo distortion in both the political and media arenas. Nevertheless, datafree policymaking is
likelyr to exacerbate rather than solve public health problems. Researchers with the requisite skills and opportunities who de-
cide not to conduct research on important and controversial topics should be considered to have failed their ethical responsibilities to the persons who might have benefited from the research. El Don C Des Jarlais and Bruce Stepherson Don C. Des Jarlais is with Beth Israel Medical Center, New York, and Bruce Stepherson is with Narcotic and Drug Research Inc, New York. Because of the issues discussed in this editorial, it is of interest to the reader to know the following about the authors' background: Dr. Des Jarlais served as a consultant to the New York City Health Department in the development of the New York syringe exchange program. He had previously served as a consultant on syringe exchange evaluation studies in Amsterdam and the United Kingdom and currently serves on the United States National Commission on AIDS. Mr. Stepherson has collaborated with Dr. Des Jarlais on a number of AIDS research studies and is a member of ADAPT. He served as a volunteer on the ADAPT project that provided services to prisoners with AIDS in New York City. Requests for reprints should be sent to Don C. Des Jarlais, Beth Israel Medical Center, First Avenue at 16th Street, New York, NY 10003.
References 1. Thomas SB, Quinn SC. The Tuskegee syphilis study 1932 to 1972: implications for HIV education and AIDS risk reduction programs in the Black community. Am J Public Health. 1991;81:1498-1505. 2. Des Jarlais DC, Casriel C, Stepherson B, Friedman SR. Expectations of racial prejudice in AIDS research and prevention programs in the United States. Drugs Soc. 1990;5(1/2):1-7. 3. Shilts R.And theBand Played On Poltics, People, and the AIDS Epidemic. New York, NY: St. Martin's Press; 1987. 4. Morgan T. Inside a 'shooting gallery': new front in the AIDS war. NY Times. February 4, 1988; Bi. 5. Friedman SR, Quimby E, Sufian M, Abdul-Quader A, Des Jarlais DC. Racial aspects of the AIDS epidemic. Calif SocioL
1988;11(1/2):55-8. 6. Anderson W. The New York needle trial: the politics of public health in the age of
AIDS.AmJPublicHealth. 1991;81:15061517. 7. Navarro, M. Yale study reports clean needle project reduces AIDS cases. NYTines. August 1, 1991:A1. 8. DesJarlais DC, MillikenJ, Lambert B. Media coverage of the AIDS epidemic among intravenous drug users. In: Fischoff S, Laczek W, eds. Mass Media and Society: The Effects ofMedia on Human Behavior. Am. Psych. Assn. Washington, DC. In press. 9. The Twin Epidemwis ofSubstance Use and HIV Washington, DC: National Commission on AIDS; July 1991. 10. Des Jarlais DC, Friedman SR. HIV infection among persons who inject illicit drugs: problems and prospects. J AIDS.
1988;1:267-273.
November 1991, Vol. 81, No. 11
beverage use. Alcohol Clin Exp Res. 1983;7,4 (fall):372-377. 5. Weissman A, Anderson R. Characteristics of health plan membership. In: Somers AR, ed. The Kaiser-Pennanente Medical Care Prgram: One Valid Solution to the Problem of Health Care Delivery in the United
States. NY: The Commonwealth Fund; 1971,33-43. Proceedings of a symposium sponsored by the Kaiser-Permanente Medical Care Program, The Commonwealth Fund, and the Association of American Medical Colleges, Oakland, Calif, March 1971.
6. Hiatt RA, Dales LG, Friedman GD, Hunkeler EM. Frequency of urolithiasis in a prepaid medical care program. Am JEpidemioL 1982;114:225-265. 7. Murphy RS. At last-a view of Hispanic health and nutrition status. Am J Publc Health. 1990;80:1429-1430.
History, Ethics, and Politics in AIDS Prevention Research There are certain properties of the human immunodeficiency virus (HIV) that make the prevention of infection difficult. A very long latency period from initial infection to the development of symptoms means that many persons remain infectious for years without realizing their condition. The probability of heterosexual transmission (with or without condoms) is very difficult to estimate, which has led to great public confusion about the level of risk for non-drug-injecting heterosexuals. These biotechnical problems are minor, however, compared with some of the political/ethical problems surrounding the AIDS epidemic in the United States. Two articles in this issue of the journal provide good illustrations of these political/ethical problems. Thomas and Quinn's1 essay on the implications of the Tuskegee Syphilis Study for AIDS prevention highlights the historically wellfounded mistrust by many African Americans of public health authorities in the United States. Public health officials must not assume that their efforts will be viewed as good-faith attempts to reduce AIDS in communities of color. (For specific examples and additional discussion of how perceptions of racial prejudice have affected AIDS prevention efforts, see Des Jarlais et al.2) Although the Tuskegee study was hardly the only cause of this distrust, it has come to symbolize unethical treatment of the poor and powerless by health authorities in the United States. It appears that this study has become an emotionally powerful symbol although knowledge of the specific historical details is not widespread. One specific detail has disturbing implications for the current situation: the research for the Tuskegee study was initiated in the absence of adequate funding to provide needed treatment. We have not solved our racial problems with respect to public health policy and practice in the United States, and we may be about to repeat mistakes generated (at least in part) by a lack of funding for what should be considered public health necessities. Moreover, distrust of public health authorities is clearly not confined to Afri-
November 1991, Vol. 81, No. 11
can Americans. Indeed, throughout the AIDS epidemic, intense distrust has been a constant theme in the relationship between "persons-at-increased-risk" for AIDS and public health authorities. Some gay men have been suspicious both of public health officials' attempts to close bathhouses and of federal officials' perceived unwillingness to commit sufficient resources to stop HIV transmission or to develop effective therapies for HIV infection.3 Illicit drug users have been quoted in the mass media as saying that the lack of legal sterile injection equipment is because "they want us to die."4 A heroin user in one of our own research studies stated that he would not participate in an official syringe exchange program because he believed that the govenmment would deliberately put the AIDS virus into the syringes to be distributed to drug injectors. (This subject was a college-educated white man.) As for the larger issue of AIDS among African Americans, there are numerous factors that need to be considered in addition to the distrust of public health officials. African Americans are a highly stigmatized group in US society, and AIDS is a highly stigmatized disease. The spread of AIDS in African-American communities clearly has the potential to reinforce stigmatization of this group. This fear has created great difficulties in mobilizing African-American responses to the threat of AIDS.5 Beny Primm summarized some of these difficulties in a statement at the First National Conference on AIDS among Minorities: "Ifyou do something now, you will be accused of racism, but if you do nothing now, in the future you will be accused of genocide." The situation is made even more complicated because African Americans are deeply divided among themselves as to appropriate AIDS prevention strategies. As noted in the Anderson6 article, the implementation of a syringe exchange program in New York City led to intense criticism of the health commissioner and mayor by African Americans, including charges of "genocide." Subsequently, the first African-American mayor elected in
New York promptly closed the syringe exchange program. Yet in contrast, the first African-American mayor of New Haven, Conn, is a public champion of the syringe exchange program in that city.7 It is unclear which spokespersons within the African-American community truly represent those at greatest risk of contracting AIDS: men having sex with other men, men and women who share drug injection equipment, or the sexual partners and children ofthe drug injectors. Indeed, with the exception of men who have identified themselves as being gay, it is generally unclearwho can speak for persons at increased risk of HIV infection in the United States. Anderson's description of the brief history of the official New York City syringe exchange study aptly illustrates the practical and ethical problems of conducting AIDS prevention research in a highly politicized environment. On a methodological level, Anderson's paper is partly based on accounts of the syringe exchange in the print media. From our own participation in the events of the syringe exchange controversy, we can attest that the media's description of the syringe exchange program tended to present both sides of the debate in an oversimplified form. In particular, the arguments of persons supporting research on syringe exchange were often reduced to their statements about potential future benefits of syringe exchange, so that there would be a direct symmetry with statements about potential harm made by opponents of such programs. This selective use of quotations from interviews to provide more dramatic contrast in a news story was also consistent with the process of justifying the use of public resources for research studies with arguments often simplistically reduced to "promises" ofthe positive outcomes from the studies. The proponents of syringe exchange research in New York City were
Editor's Note. See related articles by Thomas and Quinn on page 1498 and by Anderson on page 1506. American Journal of Public Health 1393
Editora
fiully aware that the media had these distorting effects on political debate, but they were not able to correct them. The media accounts of the positions taken by proponents of the research do, however, greatly underestimate the extent to which the proponents were arguing for the need to conduct research vs the value of providing syringe exchange as an immediate public health service in the city. We suspect that reliance on this distorted media account also led Anderson to question the ethics of having a comparison group in the study who would not have easy access to the syringe exchange. (For a more general analysis of media coverage of AIDS among intravenous drug users in the United States, see Des Jarlais et al.8) On a substantive level, there are additional considerations to be added to Anderson's account. First, we should acknowledge the personal and professional courage shown by Mayor Koch and Health Commissioners Sencer and Joseph in implementing the highly controversial syringe exchange program. These men subjected themselves to bitter personal attacks and the possible loss of their jobs to implement a program that would directly benefit the most disenfranchised group in the city. Second, Anderson's account gives little attention to purely fortuitous factors. Had Koch been re-elected mayor, the syringe exchange research program would have been expanded rather than terminated. (Koch's position in support of syringe exchange research undoubtedly hurt him in his re-election campaign, but was at most a minor issue during his primary contest with Dinkins.) Although Anderson correctly concludes that there is no "official" needle exchange program in New York City today, it must also be noted that, for the last several years, members of ACI-UP, the AIDS Brigade, and others have been operating underground syringe exchanges in New York City. These syringe exchanges are located in high drug-use areas of the city and have, in fact, been providing services to many more drug injectors than were ever reached by the city's official program. Ten of these service providers managed to get themselves arrested hoping that a trial would force the city government to re-examine its position on syringe exchanges. The judge did find for the public health necessity defense and delivered a not guilty verdict. The outcome of this trial, in combination with other factors-the recent results from the New Haven syringe exchange research, public protest by AIDS service
1394 American Journal of Public Health
providers over the City's antibleach distribution policy, and the appointment of a new acting health commissioner-has led the city government to reconsider both its antibleach and anti-syringe exchange policies. Moreover, the recent report of the United States National Commission on AIIDS,9 recommending legal access to sterile drug-injection equipment, has focused some national attention on these issues. Because of our long and often painfil experience with AIDS/illicit drug-use policy debates, we predict some increased flexibility at both the city and national level, but without expecting breakthrough radical changes. From the optimism needed to sustain prolonged efforts in this area, we also predict that both the city and the nation will continue to re-examine these policy issues until they arrive at the policies that actually do protect the public health. The AIDS/HIV epidemic among drug injectors, their sexual partners, and their children is simply too important a public health problem to permit misinformed and often counterproductive policies to be continued indefinitely. Better policies must be guided by more than political acceptability. They must also lead to reduced use of illicit drugs, reduced sharing of drug-injection equipment, and reduced heterosexual and perinatal transmission of HIV. Current research indicates that these have been proven to be complementaly rather than contradictory goals.10 To be sure, deternining the actual long-term effects of AIDS/drug-use policies will require further research, and the results from more "rigorous" research are likely to provide better policy guidance. Neither the Thomas and Quinn nor the Anderson article discusses the prior-and
overriding-ethical requirement to conduct research on important but controversial topics in public health. Conducting research on controversial topics is seldom easy. The studies are usually technically difficult, and there are sensitive ethical and cultural problems to be addressed. Funding may be difficult to obtain; to date, the federal government has refused to fund syringe exchange research and major surveys of sexual behavior. Researchers can expect bitter personal attacks even for proposing studies. They can also expect that, whatever their ultimate findings might be, the results will undergo distortion in both the political and media arenas. Nevertheless, datafree policymaking is
likelyr to exacerbate rather than solve public health problems. Researchers with the requisite skills and opportunities who de-
cide not to conduct research on important and controversial topics should be considered to have failed their ethical responsibilities to the persons who might have benefited from the research. El Don C Des Jarlais and Bruce Stepherson Don C. Des Jarlais is with Beth Israel Medical Center, New York, and Bruce Stepherson is with Narcotic and Drug Research Inc, New York. Because of the issues discussed in this editorial, it is of interest to the reader to know the following about the authors' background: Dr. Des Jarlais served as a consultant to the New York City Health Department in the development of the New York syringe exchange program. He had previously served as a consultant on syringe exchange evaluation studies in Amsterdam and the United Kingdom and currently serves on the United States National Commission on AIDS. Mr. Stepherson has collaborated with Dr. Des Jarlais on a number of AIDS research studies and is a member of ADAPT. He served as a volunteer on the ADAPT project that provided services to prisoners with AIDS in New York City. Requests for reprints should be sent to Don C. Des Jarlais, Beth Israel Medical Center, First Avenue at 16th Street, New York, NY 10003.
References 1. Thomas SB, Quinn SC. The Tuskegee syphilis study 1932 to 1972: implications for HIV education and AIDS risk reduction programs in the Black community. Am J Public Health. 1991;81:1498-1505. 2. Des Jarlais DC, Casriel C, Stepherson B, Friedman SR. Expectations of racial prejudice in AIDS research and prevention programs in the United States. Drugs Soc. 1990;5(1/2):1-7. 3. Shilts R.And theBand Played On Poltics, People, and the AIDS Epidemic. New York, NY: St. Martin's Press; 1987. 4. Morgan T. Inside a 'shooting gallery': new front in the AIDS war. NY Times. February 4, 1988; Bi. 5. Friedman SR, Quimby E, Sufian M, Abdul-Quader A, Des Jarlais DC. Racial aspects of the AIDS epidemic. Calif SocioL
1988;11(1/2):55-8. 6. Anderson W. The New York needle trial: the politics of public health in the age of
AIDS.AmJPublicHealth. 1991;81:15061517. 7. Navarro, M. Yale study reports clean needle project reduces AIDS cases. NYTines. August 1, 1991:A1. 8. DesJarlais DC, MillikenJ, Lambert B. Media coverage of the AIDS epidemic among intravenous drug users. In: Fischoff S, Laczek W, eds. Mass Media and Society: The Effects ofMedia on Human Behavior. Am. Psych. Assn. Washington, DC. In press. 9. The Twin Epidemwis ofSubstance Use and HIV Washington, DC: National Commission on AIDS; July 1991. 10. Des Jarlais DC, Friedman SR. HIV infection among persons who inject illicit drugs: problems and prospects. J AIDS.
1988;1:267-273.
November 1991, Vol. 81, No. 11
