The following essay is reprinted with permission from the AIDS & Public Policy Journal, Vol. 20, No. 1/2, pp. 51-58. Copyright © 2005, University Publishing Group. All rights reserved.

In Robert Klitzman & Ronald Bayer’s Mortal Secrets: Truth and Lies in the Age of AIDS (Baltimore, MD: Johns Hopkins University Press, 2003), the authors attempt to put a human face to the HIV/AIDS epidemic. They seek to understand how people with HIV “think about disclosing their infection and having sex.” And ultimately they attempt to describe policies that will reduce HIV transmission. Both Klitzman and Bayer have extensive academic careers in ethics and public health, as well as having researched and written extensively about HIV/AIDS. Ronald Bayer, Ph.D., a professor at the Mailman School of Public Health, Columbia University, is the author, for example, of the seminal Public Acts, Private Consequences: AIDS and the Politics of Public Health (1989); Robert Klitzman, M.D., also at Columbia, is the author of Being Positive: The Lives of Men and Women with HIV (1997), among many other publications. Klitzman & Bayer’s project had the financial support of several foundations, including the Aaron Diamond Foundation and the Merck Foundation, as well as grants from the National Institute of Mental Health of the U.S. Department of Health and Human Services.

In the mid-1990s, Klitzman & Bayer undertook one- to two-hour interviews with 77 research subjects – primarily but not exclusively men and women with HIV. These interviews were recorded, transcribed, and analyzed, and the results form the basis for Mortal Secrets. This book thus presents the views expressed by the study participants concerning their decision to be tested for HIV and to disclose positive results, book-ended with the authors’ own overview of related legal and policy issues. Readers living with HIV or those engaged in HIV-related social or health care services will certainly recognize the voices that Klitzman & Bayer present and will probably gain little if any new insight into the lives of those with HIV. Perhaps the greatest value of this book, however, will be for those who are not familiar with the issues faced by people with HIV. They should gain insight into how it is that disclosure of HIV status is not a simple or easy matter, even when another person is being put at risk. As the authors state in their conclusion, “we have come to understand how hard it is to wrestle with the issues involved [in telling the truth about HIV status], how difficult it is to communicate . . . even when people want to and feel they should.”

In terms of their objective, the authors explain: “rather than speak about or even for those with HIV, we wanted to understand how those who are infected see their world and approach these issues [of disclosing their infection and having sex].” This is not the only objective, however, of the authors. The study itself involved interviews with 77 individuals, but of those, only 60 were infected with HIV. The authors do not explain exactly how a study that eschews speaking “about or even for those with HIV” could have 22 percent of the participants not infected with HIV. In reality, the uninfected study participants are often individuals who were at risk for HIV, often as a result of their sexual partner’s failure to disclose HIV status, or in a relationship with someone with HIV. In a sense, then, another objective of the authors was to give voice to this perspective.

Reading this account, one cannot but wonder if selecting interview answers and weaving those answers together in a narrative involved far more art than science. The authors explain that “some individuals appear more frequently here than others and hence serve to anchor our examination.” Presumably, the individuals who appear more frequently presented experiences that were representative of others, although the authors do not say that. Within the universe of experience presented by the study participants, the authors sought to identify patterns in the circumstances in which participants chose to disclose, not disclose, or even misrepresent their HIV status, not just to sex partners, but also to family members, friends, and co-workers.

Although the authors reach many conclusions based on the interview results, it is not clear whether the reported experiences are typical and can be generalized to others with HIV. In particular, regarding the issue of knowing risk of transmission to others, the authors note that “some” of the study participants – the authors do not say how many – admitted that they had engaged in behavior that placed their partners at risk for infection. The authors explain that they found this candor “remarkable” on the assumption that some participants might have withheld information about such behaviors, rather than admitting that they had put another at risk. The authors then speculate that the “frequency of nondisclosure” reported by these participants might represent a floor, or lower bound, of such behavior. But not only do the authors not tell us precisely how many of the participants admitted to putting others “at risk,” they do not state the degree of the risk posed by the behavior. Although the authors reference and summarize several studies addressing the issue of nondisclosure of HIV status, the authors do little to help us understand to what extent current rates of HIV infection are the result of nondisclosure, or, more specifically, the result of affirmative deceit regarding HIV status. The authors do reference the fact that the majority of individuals with HIV are unaware of their infections, and thus this certainly is a primary cause, if not the primary cause, of new infections. The book itself, however, themed as it about “truth and lies,” presents the issues of truth-telling and deception in the foreground, potentially giving deceptive behavior on the part of individuals with HIV more prominence than it deserves in terms of HIV transmission overall. Of course, even if knowing transmission is a minor factor in new infections, that does not mean that it is not worthy of inquiry. But certainly when addressing overall responses to the epidemic, as these authors purport to do, keeping an appropriate perspective is necessary.

The study participants were selected “to be representative of the major groups affected and infected by HIV: male and female injecting-drug users and their sexual partners – whether heterosexual, lesbian, or gay – and gay men.” Participants were recruited from a program for gay men with HIV at Columbia University, from a study of heterosexual couples of mixed HIV status, from an infectious disease clinic at an “inner-city hospital” that treated men and women of color, and from advertisements in gay magazines. Whether the “major groups affected” are represented, however, depends on how you choose to define those groups. Although the authors note, for example, the high rate of HIV infection among female African-American adolescents, the voices of these young women appear to be missing here, as are, for that matter, the voices of any adolescents confronting HIV. Indeed, the youngest participant I could identify was “Audrey, a 27-year-old white woman who was a Ph.D. candidate in sociology.” Although it is not clear at what age Audrey first tested positive for HIV, she does not appear to be representative of very many teens affected by HIV.

Determining the age of the study participants is difficult because the authors provide their ages, if at all, the first time a participant is identified or quoted. Subsequent references to that participant then omit the age (e.g., the initial reference to one participant, “Larry, a 49-year-old white gay man who was an emigré from New Zealand,” includes his age, but nine pages later he is referred to as “Larry, the HIV-positive New Zealander”). Given the number of participants that are identified in the text, it is unreasonable to expect the reader to retain this information about each one. Although the book is indexed, the participants themselves are not, so it is difficult to trace their appearances through the book. No table or other format presenting the participants’ ages is provided.

It is difficult to imagine that the thinking of teens regarding HIV testing and disclosure issues (or even older interviewees who acquired HIV or tested positive during adolescence) is the same as that of individuals 20 or more years their senior. Indeed, surveying the chapter that addresses disclosure to sexual partners, I found that the study participants ranged in age from 27 to 56, with 43 as the average age. Thus, when the epidemic started in the early 1980s, most of the participants were already approaching 30 years of age. Many others were older. None appear to have experienced the epidemic as adolescents. Yet the problem of HIV among adolescents was significant enough at the time that the authors undertook their interviews that, for example, the National Commission on AIDS devoted a report to the subject.¹ One can only suspect that younger study participants might have presented significantly different perspectives on the questions of disclosure, morality, and the related issues addressed in the participant interviews. Their lack of participation, not explained by the authors, is a major limitation on the results of the study. The authors’ study was also limited to individuals residing in New York (with the exception of one participant), although the authors do not explain how many participants resided in rural or urban areas.

Although the authors try to maintain a neutral and non-judgmental perspective, perhaps because of the focus on gay men and not on younger heterosexuals, not-so-subtle biases are present. The authors’ second chapter, “Sexual Partners,” which presents the participants’ views on disclosure in the context of sexual relationships, for example, is organized on a continuum, beginning with “Long-Term Partners: The Imperatives of Trust” and extending to “Casual and Anonymous Partners.” Although the authors present gay men in long-term, trusting, and honest relationships in this chapter, the section on “Casual and Anonymous Partners,” focuses almost exclusively on gay and bisexual men (the exceptions are a female sex worker and a former drug user who reports that her bisexual husband infected her) and emphasizes relationships in which HIV status is not disclosed or is lied about. (The concept of “casual partners” is not defined, but it would appear that whatever they are, only gay or bisexual men or sex workers have them – as though thousands of heterosexuals do not have “casual” partners.)

All of the study participants that are quoted in the “Casual and Anonymous Partners” section are gay men, with the exception of two women. The first woman, “Karen, a 44-year-old African American,” apparently did not have casual partners, but was instead infected by her husband who did. She explains her husband’s behavior:

If it’s a one-night thing, I guess they probably figure as long as they’re protecting their partner, why should they tell? But a relationship is different. The girl’s going to find out sooner or later, especially if they’re living together. It’s going to be really hard for him to hide. I think probably he could do a good job, but sooner or later there’ll be signs.

The disturbing assumption (both Karen’s and, apparently, the authors’) underlying this vingette is that Karen’s husband knew he was infected when he infected her – and that she did not infect him. Karen is quoted as saying that she was not infected during her “years of drug use,” but instead by her husband when they stopped using condoms. Karen’s account may certainly be true, but because the authors provide so few details (for example, does Karen know she was infected by her husband because she had tested negative after her years of drug use but before having unprotected sex only with her husband?), Karen’s account has to be taken on faith. Certainly Karen’s morally tidy story about her HIV infection is self-serving: it relieves her of taking responsibility for her own infection and places it on her dishonest husband. And whether Karen’s husband put his “casual” partners at risk by not disclosing his status (assuming, again, that he knew his status) is obviously speculation on Karen’s part (“. . . I guess they probably figure . . . why should they tell?”). There are, of course, limits to which the authors could go to determine the truth of what the study participants told them, but especially here, where a study participant is not describing their own behavior, but that of someone else, and, moreover, doing it in an explicitly speculative manner, more details should have been provided to indicate that Karen’s story is worthy of belief. Alternatively, this sort of narrative, in which a series of negative and judgmental assumptions are presented as fact without supporting details, should have been omitted from the book. Yet it is a key link in the authors’ presentation of the evils of nondisclosure in the context of “anonymous and casual” partners. The second woman presented in this section, Dolores, was a sex worker who reported that she did not tell her paying sex partners, but even if asked, she would lie about having HIV. This linking of casual and anonymous sex exclusively to gay and bisexual men and sex workers is certainly a misrepresentation of sexual behaviors in relation to HIV transmission.

Although Klitzman & Bayer summarize several philosophical views on the morality of truth-telling, and in particular contrast the views of Sissela Bok (who is described as condemning deceit, even when it is done for beneficial purposes) and David Nyberg (who is described as allowing that deception is integral to human well-being) to provide moral parameters for the scenarios reported by the study participants throughout the book. Ultimately, however, as the authors concede in their conclusion, neither Bok nor Nyberg would allow that putting someone at risk for HIV infection, without disclosure of that risk, is morally acceptable. But given this consensus regarding this central moral question, how should society respond on the level of law and policy? Obviously, it is one thing to say that certain behaviors are immoral, yet something else again to say that they should be subject to sanction under the criminal law.

How the authors respond to this question is disappointing. After presenting a thorough overview of the arguments for and against using the criminal law in response to the epidemic, they offer this:

Wisdom would dictate that these legal decisions attend to the experiences of those whose lives have been indelibly marked by the AIDS epidemic and consider the ways in which the law would affect the transmission of HIV. Ultimately, it is against that yardstick and its implications for the saving of lives that policy must be judged.

This style of writing has a certain rhetorical resonance, but it is virtually incomprehensible in terms of precise meaning and of little or no use in the real world of HIV policy-making. Perhaps they simply mean to say that “criminal prosecutions are acceptable if they save lives by reducing HIV transmission.” But that begs the question. After all, how do we know, for example, if putting an individual in jail who has failed to disclose his HIV infection before sex with numerous partners saves more lives than if he had been given a further opportunity to identify his partners for partner notification purposes? How do we know if highly publicized prosecutions of individuals with HIV (the Nushawn Williams case comes to mind here – he was prosecuted during the time period Klitzman & Bayer were working on this book) simply persuaded dozens of others not to participate in partner notification activities?

Regarding the problem of what the authors call “stalled HIV prevention” – the situation in which the current rate of 40,000 new HIV infections each year has remained stable for the past decade – the authors provide an overview of the policy issues both pro and con, but the discussion of at least two important points is skewed. First, in discussing partner notification efforts, the authors imply that HIV confidentiality law hamper such notification efforts. This assertion is questionable, at best.

The authors argue that such laws are the result of the influence of “gay rights and AIDS advocates and defenders of civil liberties” who argued for “ironclad confidentiality protections” and “succeeded in getting such protections enacted into state law.” Surely this is a gross exaggeration, and the authors fail to cite any state’s laws as providing such ironclad confidentiality. In reality, the “gay, AIDS and civil liberties” lobby, as Bayer & Klitzman would have it, has never exercised such influence with state legislatures, nor have those legislatures been persuaded to adopt HIV confidentiality statutes unless they are riddled with exceptions.

Although their rhetoric is far more judicious, Klitzman & Bayer do sound like an echo of the right-wingers in the 1980s, arguing that the failure to address the AIDS epidemic effectively was the result of the unchecked, insidious power of the “homosexual lobby.” (In attempting to be even-handed, however, they do later give “activists” credit, along with their “allies, inside and outside government,” for the fact that “AIDS policy has avoided the pitfalls of a mindless embrace of coercion.”) But whether states have strong confidentiality laws or not is beside the point. In reality, the effectiveness of partner notification programs has little to do with how “ironclad” a state’s confidentiality standards are. After all, in partner notification, the source patient’s disclosure of partner information is voluntary and is premised on the source patient’s consent to disclose. How “ironclad” a state’s laws might be is irrelevant; the source patient is waiving whatever rights he or she may have under those laws. To the extent that the authors are referring to disclosure without a patient’s consent – as might be the case when a health care provider is aware of a patient who is putting his or her partner at risk and wishes to warn that third party at risk – state HIV confidentiality laws, including those in California and New York, typically include provisions that allow precisely that disclosure. What the authors seem to say – their position is not clearly stated – is that such third party warning laws should be mandatory, rather than discretionary, in order to be effective. The authors refer with seeming approval to one such law in New York state, which requires physician disclosure to the state health department the identity of patients who put their spouses at risk for infection. But the authors fail to mention a significant potential downside to such notification: namely, that disclosure to the spouse will end the marriage, with the potential result that the infected patient will put new partners at risk. The authors also fail to draw another important distinction in regard to partner notification. Many such programs are offered to people who have initially tested positive and now have the opportunity to inform their past partners that those partners have been unknowingly put at risk for infection. But for an individual who knows his or her infected status, notifying past partners raises the issue of self-incrimination and the risk of criminal prosecution, as I have discussed previously in this Journal.²

The authors correctly identify an underlying problem: as long as people with HIV fear discrimination, they are less likely to disclose their HIV status or participate in partner notification programs. In specific regard to HIV-based discrimination, they explain that because of legal and attitudinal changes, people with HIV have much less to fear than they did early in the epidemic. This may be correct to some degree, but the authors marshal no evidence that the situation has improved so significantly that now people with HIV can reasonably discard their fears. Moreover, the authors exaggerate the state of the law in protecting the rights of people with HIV. They refer to the enactment of the Americans with Disabilities Act of 1990 (ADA) as providing “some formal legal protection for those with . . . asymptomatic HIV infection.” Later, they state that “courts . . . typically supported people with HIV when confronted with employment discrimination.” Here, the authors are viewing the history of HIV nondiscrimination enforcement through rose-colored glasses. The question of whether asymptomatic HIV infection was a disability under the ADA was sufficiently unsettled that the Supreme Court addressed the issue in 1998 in Bragdon v. Abbott.³ The Bragdon ruling did not entirely settle the question, and thus even after Bragdon, lower courts have held that plaintiffs with asymptomatic HIV infection are not protected by the ADA because they do not fall within the ADA’s definition of disability. Even putting this ADA issue aside, it is simply incorrect to generalize that the courts have “typically supported” people with HIV. On the contrary, many judges appear to view HIV discrimination claims, or any discrimination claims for that matter, with what appears to be hostility.

To their credit, the authors accurately note that “the legacy of the epidemic’s first decade, characterized by shameful neglect, had profoundly marked the lives and consciousness of those whom we interviewed – fueling fears of stigmatization.” But that first decade was over for a decade before their book went to print, so it is fair to expect that the authors would take up the question of what has been done to address that shameful neglect in more recent years. On that issue, the authors’ discussion of policy issues is superficial. They assert, quite correctly, that the stigmatization of people with HIV has resulted from “latent and manifest homophobia, racism, and fear of and revulsion towards injecting-drug use,” and they argue that to increase self-disclosure of HIV status, we must “require ongoing efforts to confront the cultural and social factors that underlie such animosity.” But what efforts might those be? The authors do not say. Although they emphasize, for example, that disclosure is more likely to take place in committed, loving relationships – both gay and heterosexual – it is remarkable that they do not even mention legal and policy initiatives that might support and reward same-sex relationships. They do not mention the adoption of domestic partnership benefits by public and private employers. Nor do they mention the ongoing political controversy surrounding same-sex marriage, including the federal Defense of Marriage Act (1996), which bars interpreting marriage under federal law to include same-sex marriage. Similarly, the authors note that fear of discrimination based sexual orientation may “limit the full effectiveness of partner-notification efforts,” and they mention the ostracization of gay teens as promoting risky behavior. Yet the authors fail to mention, for example, the failure of Congress to adopt a national sexual orientation nondiscrimination law. Nor do they mention congressional support for abstinence-only sex education, with its implicit anti-gay ideology. Similarly, they say nothing about the long-standing congressional prohibition on the use of federal funding for syringe exchange programs. They might also have noted that the gay and bisexual New York residents in their study were not protected from sexual orientation discrimination under New York state law at the time that they conducted their interviews, but that prior to the book’s publication, New York adopted such a law, joining only 16 other states. These are just a few examples of the many specific legal and policy issues that deserve at least passing mention in any such survey, but that are missing from the authors’ discussion.

Because the authors concede that deception that endangers others is reprehensible, readers may be surprised that they also take the position that “decisions about when, what, and to whom to disclose must remain with those who bear the secret. No moral calculus could justify intrusions on that right of self-determination or would be compatible with an essential respect for human dignity.” It is not clear from the authors’ position on this point, even though the above statement seems to be made without exception, whether they would condemn the many state laws that authorize courts in both civil and criminal cases to order HIV testing and disclosure of the results in order to notify others, often sexual assault complainants or health care workers who have suffered a needle-stick or similar injury, as to whether they have been put at risk for HIV infection. Although such statutes are used only rarely in civil cases, in criminal cases they are frequently invoked and have been consistently upheld against constitutional challenges by criminal defendants. The authors’ defense of human dignity in this context is also somewhat beside the point. In every case of confidential (as opposed to anonymous) HIV testing, the test result is documented and reported, generally with the patient’s identity, to public health authorities. As someone with HIV seeks health care and social services, this information is often replicated through myriad medical and social service record systems that can be accessed by subpoena or disclosed by court order. Not only does no one obtain the consent of the patient/client before the HIV information is recorded, reported, and copied, often this record-keeping goes on without the knowledge of the patient. If the patient provides names of sexual contacts for partner notification purposes, no one tells that individual that in doing so, he may be admitting the commission of a crime.

In Mortal Secrets, Klitzman & Bayer’s account of why people living with HIV choose not to disclose that fact is often intimate, specific, and detailed, and they often reach specific conclusions about people with HIV based on that account. Their salutary conclusion for policy makers is that the “morally unambiguous” necessity to prevent harm by disclosing HIV is in reality “far more complex,” and that both disclosure and silence carry a price for people with HIV. Nevertheless, they do not shy away from concluding that nondisclosure that results in risk of transmission is morally wrong. Yet when they turn to the policy issues raised by their study, their discussion is often unnecessarily equivocal. Compared with their moral assessment of the behavior of individuals with HIV, they seem far less interested in confronting in any detail the morality of our society’s legal and policy response to the epidemic.

NOTES

1. National Commission on AIDS, Preventing HIV/AIDS in Adolescents (1993).

2. David W. Webber, “Self-Incrimination, Partner Notification, and the Criminal Law: Negatives for the CDC’s ‘Prevention for Positives’ Initiative,” AIDS & Public Policy Journal 19(1/2); 54-66.

3. 524 U.S. 624 (1998).