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“The only thing necessary for these diseases to the triumph is for good people and governments to do nothing.”

    


 

Surveillance, Social Risk, and Symbolism: Framing the Analysis for Research and Policy

http://www.managingdesire.org/hivsurv/burris.html

JAIDS Journal of Acquired Immune Deficiency Syndromes 25:S120-S127 December, 2000 Lippincott Williams & Wilkins, Inc., Philadelphia

Scott Burris

Temple University Beasley School of Law, Temple University, Philadelphia, Pennsylvania; and Center for Law and the Public's Health, Georgetown and Johns Hopkins Universities, U.S.A.

Summary: Name-based surveillance for HIV, considered alone, is a useful public health measure; its benefits outweigh its direct costs. There is little evidence that name-based surveillance directly deters individuals at risk of HIV from being tested, or exposes them to significant social risks. Yet such surveillance is chronically controversial. Understood in a broader context of the social risks and symbolic politics of HIV, as subjectively experienced by people at risk, this opposition is both rational and instructive. Although often discussed, the social risks of HIV infection are poorly understood. To the extent these risks have been addressed by privacy and antidiscrimination laws, the solution has been less complete than many public health professionals appear to believe: developments in law and policy, including the increasing prevalence of criminal HIV transmission laws and proposed changes in HIV testing and counseling standards, are contextual factors that help explain the opposition to name-based surveillance. Rather than focusing piecemeal on specific "barriers" to testing and care, an appreciation of the surveillance debate in context suggests a positive undertaking in public health policy to provide the conditions of opportunity, information, motivation and confidence that people with HIV need to accept an effective program of early intervention. Key Words: Criminal law-HIV testing-HIV reporting-Confidentiality-Discrimination-Politics.

Name-based surveillance for HIV, considered in and of itself, is a useful public health measure, the benefits of which far outweigh direct costs. There is little evidence that name-based surveillance directly deters individuals at risk of HIV from being tested, or exposes them to significant social risks. Yet the imposition of surveillance by name has been chronically controversial, steadfastly opposed by HIV advocates, civil libertarians, and even some public health professionals. This essay suggests that such opposition is not only rational, but also instructive, and undertakes to reframe the surveillance debate in order to draw out its useful lessons.

Name-based surveillance cannot be properly considered, as a policy, by itself. Its significance is much better appreciated in the context of the social risks and symbolic politics of HIV, as these are subjectively experienced by people with and at risk of HIV. Although often talked about, the social risks of HIV infection are poorly understood. To the extent that these risks have been addressed by privacy and antidiscrimination laws, the solution has been less complete than many public health professionals appear to believe: developments in law and policy, including the increasing prevalence of criminal HIV transmission laws and proposed changes in HIV testing and counseling standards, are environmental phenomena that help explain the intensity of opposition to surveillance by name. This essay proposes a holistic heuristic for practical prevention policy making. Rather than focusing piecemeal on specific "barriers" to testing and care, the surveillance debate counsels public health policy makers to provide the conditions of opportunity, information, motivation, and confidence that people with HIV need to accept an effective program of early intervention.

THE SURVEILLANCE DEBATE: STANDARD VERSION

With apologies for a certain amount of oversimplification, conventional public health wisdom about the name-based surveillance debate may be portrayed thus: name-based surveillance is a useful public health too], but can be problematic when applied to a disease like HIV, which is associated with distinct risks such as breach of privacy, discrimination, and stigmatization. Although name-based surveillance itself is safe, it can trigger individuals' concerns about these other risks, and so counterproductively becomes a barrier to testing, access to care, and other desirable health behavior. Determining appropriate surveillance policy at any given time therefore requires an assessment of whether the benefits of name-based surveillance have sufficiently increased, and the risks been sufficiently addressed, to change the risk benefit calculation in favor of reporting names (1,2).

Within this framework, there is quite a strong case to be made for named surveillance for HIV. The data will help prevent disease, put money where it is needed, and could, at least in theory (3), be used to help get people into care. Health departments have an excellent record of maintaining confidentiality (2). Name-based surveillance seems to have only a slight impact on testing, particularly if anonymous testing remains an option (4-10). Indeed, people being tested generally are not aware of the reporting requirements that will apply to their results (11, 12). Laws protect people from discrimination and breach of privacy. Given this strong case, some public health professionals are frustrated by, and impatient with, the continuing opposition to HIV reporting by name. They tend to explain opposition as being based on misperceptions about the safety of public health data. They suggest that opposition to name-based surveillance is a relic of "AIDS exceptionalism," (13,14) arguing that there are no longer good reasons for treating HIV "differently" from other reportable diseases. To the extent that name-based surveillance does pose risks to privacy, or of discrimination, they suggest that the balance between individual rights and public health must in this instance be adjusted toward the public health side.

 


THE LIMITS OF THE STANDARD VERSION

The "standard version" is a good analysis of name-based surveillance standing alone-but name-based surveillance doesn't stand alone. To ask how name-based surveillance influences individual behavior is to assume that "surveillance" is a meaningful category in the behavioral decisions of individuals, and to overlook the issue of how surveillance as both a practice and a policy issue interacts with other phenomena in the social environment to influence both individual behavior and social dispute. In the metaphor of barriers, moreover, lurks the confounding assumption that the person at risk was on the road to testing or care before name-based surveillance interposed itself in her way, an assumption that drastically oversimplifies the process and diverts attention from the fundamental question of what makes people seek help on their own. If name-based surveillance really is such a good idea for public health (and so unlikely to harm people with HIV), then we may profitably focus less on convincing opponents than on understanding why opposition persists. Instead of asking how particular health practices such as surveillance independently influence health behavior, we should begin to look more broadly at the phenomenon of "social risk," and to study how it is experienced by people with and at risk of HIV, how it influences behavior, and how the social risks of HIV can effectively be reduced.

NAME-BASED SURVEILLANCE IN A CONTEXT OF SOCIAL RISK

What should we take from the fact that there is little or no opposition to name-based surveillance for measles, Lyme disease, and tuberculosis, yet serious opposition to such surveillance for HIV infection? One of the most important inferences to be drawn is that name-based surveillance itself-the collection of individually identifying data about the incidence or prevalence of a disease in the population-is not a matter of controversy. It is not the collection of names that is the problem, but the potential risks to those whose names are collected. The risks are not medical; indeed, the testing that produces the case report may often lead to medical benefits. Rather, the risks are to the social and economic status of the person being tested.

It has long been recognized that having HIV, or even being regarded as at risk of HIV, can lead to discrimination, stigmatization, and other socioeconomic harms (15). HIV is a stigmatized condition, and those who have it are faced with a certain amount of social hostility. The stigma and hostility are magnified by the fact that HIV is spread by behavior that is itself socially problematic: both drug use and homosexuality are independently subject to stigma and social hostility (16). Surveillance by name is just one practice that potentially poses such social risks. Others include mandatory testing, partner notification, poor handling of medical records, and criminalization of HIV-spreading behavior.

Despite the large role that social risk has played in HIV policy, little is known about the influence of social risk on behavior in the context of HIV. What is the incidence and character of social mistreatment based on HIV? How do people who are socially vulnerable because of HIV perceive their peril? How do perceptions of social risk influence important health behavior? Are current policies effective in reducing their fears or influencing their behavior? There are too few good answers to these basic questions.

The main reason there are too few answers is that we have too rarely asked the right questions. Asking how particular policies influence HIV testing and other health behaviors assumes that individuals are aware of and immediately responsive to those policies. Such questions assume, that is, that "surveillance" and "partner notification" and "criminal law" are meaningful analytic categories for people at risk in the world. There are, however, good reasons to doubt that most people categorize phenomena in the same terms as public health professionals, researchers, and even politicians (17). Conceivably there are people whose sole reason for not being tested is a concern about name-based surveillance, but for most people surveillance is probably bound up with other concerns about testing in complicated ways. Recent research found that most people appearing for testing in the studied states were actually unaware of the conditions of reporting that obtained (11, 12). This does not mean that people who did not appear at test sites were not deterred by name-based surveillance. It is also quite possible for name-based surveillance to influence people who do not know about it: concern about surveillance among social opinion leaders or advocates could filter down to people at risk in the form of less positive attitudes toward testing or greater anxiety about being known to have HIV. All this simply illustrates how complex are the mechanisms through which policies create social risk and influence behavior. The key question is how people with and at risk of HIV perceive the dangers of being tested or treated, and how those perceptions influence behavior.

It may be useful to agree upon terms. Social risk may be defined as the danger that an individual will be socially or economically penalized should he or she become identified with an expensive, disfavored, or feared medical condition. Social risk may be seen to have two distinct components: (1) "the threat" (i.e., the attitudes and behavior that cause or threaten social harm) and (2) "the perception of risk" (i.e., the attitudes and beliefs about the threat among those who are in some way tied to the trait or disease) (17,18). Social risk, by hypothesis, will influence health behavior whenever the social construction or economic cost of a disease creates the perception of a risk that, alone or in combination with other factors, outweighs the benefits of obtaining diagnostic or therapeutic care.

Adopting this framework helps clarify several issues related to name-based surveillance. The distinction between the threat and the perception of risk emphasizes that the actual danger of harm coming from surveillance is largely irrelevant; people's behavior is likely to be governed by the perceived risk. The perception of risk, in turn, is the product of a set of cognitive heuristics that are themselves not particularly sensitive to actual probabilities of harm (19). In plain terms, people are afraid of things that they are aware of, whose consequences strike them as particularly unpalatable, and which they feel they cannot control. Informing a person that there is very little chance of surveillance information being released and causing harm is much like telling a person afraid of flying that planes rarely crash. The risk assessment is driven by the horror of the consequences, not their likelihood.

It is equally important to consider that the perception of the risk may not be based purely, or even substantially, in information about surveillance. People live in context. Many people will not distinguish different parts of the "system," and so may not see the helpful public health official as distinct from the threatening legislator or policeman. They have had experiences with doctors or with the health care system or with the system generally. They tie name-based surveillance to other issues and concerns, like racism or homophobia or social rejection (20).

A more comprehensive and nuanced conception of social risk also raises serious concerns about how policymakers and health care providers have responded to social risk. There has been a tendency to think about social risks primarily in the legal terms in which they first entered policy debate: breach of privacy and discrimination. Unfortunately, a legal problem implies a legal solution: if people are worried about privacy and discrimination, the answer is to pass privacy and discrimination laws, and with their passage the problem is solved. Passing such laws was a good idea, but hardly a complete solution to social risk.

There are many social risks that law does not address. It is illegal for an employer to fire a person because he has AIDS, but it is not illegal for members of a church congregation or other social group to shun him. A woman abandoned by her husband because she has HIV has no discrimination claim. Even where law provides a remedy in theory, it may not be effective in practice, as many victims of domestic violence will attest (21). For many people, the eventual remedy the law promises may not look substantial enough to overcome the immediate fear of being banned; for example, a person whose unwillingness to be tested arises from fear of losing job, benefits, and social support may not be reassured by the possibility of winning money damages at the end of several years of employment discrimination litigation. And for some people, law is a hostile or alien force that is either inaccessible or positively dangerous to encounter (22,23).

The limits of law as a way of addressing social risk, together with sensitivity to social risk as a cognitive phenomenon, have at least one very important implication for prevention and clinical practice: public health workers and health care providers can play a significant positive role in addressing social risk. Laws can help make the social environment more favorable to testing, but it is just as important to find ways to help individuals better cope with both the threat and perception of social risk. A provider can do much more to address a patient's social risk perceptions than just warning her of the risks and informing her of the law in the course of informed consent or counseling discussions. Indeed, merely warning people that testing can be socially risky may actually make the risk appear greater to the patient than it really is, or may cause the patient to worry about the risks when she otherwise was comfortable with testing, and telling people about legal protection may not be as reassuring as the provider assumes. Securing informed consent to run a risk, though important, is never a substitute for minimizing or eliminating the risk. Along with information, the patient needs help in addressing her perceived risks and making sensible choices about whether the risk of testing or partner notification or health care outweighs its benefits, help that counselors, case managers, and even physicians may often be able to provide, and which will always be more accessible than help from the legal system.

SOCIAL RISK AND NAME-BASED SURVEILLANCE IN A POLITICAL CONTEXT

This essay has suggested that name-based surveillance is just one of many sources of social risk, none of which are necessarily perceived or assessed independently by people making decisions about their behavior. A similar point can be made in reference to name-based surveillance as a matter of social and political dispute. Just as surveillance may not be experienced by people at risk of HIV as a distinct source of social risk, so surveillance and social risk themselves are not necessarily separable from a range of policy disputes that affect the lives of people with and at risk of HIV, or the political fortunes of their advocates. Name-based surveillance is a tried, true, and valuable public health measure that in a perfect world would have nothing to do with politics. In the inevitably political world of public health (24), however, surveillance is just one chip in a heated game of social and political poker.

Surveillance by name is an important symbolic battle in a larger social struggle for status and power. Sexually transmitted disease control policies have historically reflected and been a vehicle for the expression of competing social norms about sexual behavior and the status of women and minorities (25). HIV stigma is still closely tied to homosexuality. Most heterosexual Americans still associate HIV with homosexuality and bisexuality, and HIV control has often been explicitly or implicitly tied to the regulation of homosexuality (26). Surveillance rules, like mandatory testing or criminal transmission laws, represent an assertion of social control over those at risk of HIV, and their passage in a legislative or administrative struggle often represents a victory for social factions who not only believe that homosexuality and drug use are wrong, but also that the toleration of these behaviors undermines their own values and social status. Much political activity involves the gathering of such symbolic spoils (27). On this view, name-based surveillance for HIV is part of the same deeper struggle as laws prohibiting sodomy, or denying civil rights protection to gay men and lesbians (28).

 


This is emphatically not to suggest that public health proponents of named-based surveillance are homophobic or intent on furthering any agenda other than better HIV prevention, but only to note that such surveillance has a larger political dimension. Nor are larger political motivations limited to some of those who favor surveillance. The prevention of name-based surveillance or the use of unique identifiers is an important symbolic victory for HIV advocates, whose grass-roots support and future influence depends upon appearing to influence policy. Privacy, moreover, is a perennially good advocacy issue. It energizes the home base and it speaks to other people who haven't really thought about the HIV issue. Surveillance by name is one of the smallest privacy threats faced by people with HIV, but it is just about the only privacy battle advocates feel they can win. Indeed, there is a paradox here: advocates can go to the Centers for Disease Control (CDC) or state health department and get serious consideration and even such compromises as unique- identifier reporting. They cannot get an audience with the medical information bureau, large managed care operations, or pharmacy chains.

Perhaps most importantly, name-based surveillance is a symbol of voluntarism in HIV control. The decision of CDC in the early 1980s to favor a system of voluntary testing and counseling, including anonymous testing, and generally not to call for named HIV reporting, was the defining moment in the creation of a fragile "voluntarist consensus" in HIV control (29). This consensus was never complete, even in the federal government (30), but for all its limitations, the idea that HIV prevention entailed cooperation, mutual respect and protection against social risk has been an important one in the development of HIV prevention, not just here but around the world (31,32). The CDC's decision to revisit name-based surveillance is just one of a series of events that raises the question of whether voluntarism is and can remain at the heart of HIV policy, and it is in this context that the controversy, and its possible effect on testing, must be seen.

The use of criminal law as a means of addressing HIV transmission continues to be a topic of debate, and a matter of action. Thirty states have laws specifically criminalizing at least some behavior that might spread HIV. The most narrow, like California's, punish only deliberate use of HIV as a weapon to cause harm through sex (33). Many are broader: Idaho's law, for example, makes a criminal of anyone who "transfers or attempts to transfer" body fluid in any way, knowing that he is infected (34). Given research findings that a substantial proportion of people who know they are infected with HIV sometimes engage in unsafe sexual or needle sharing behavior without informing their partners of their infection (35), broad laws like Idaho's make most people with HIV into potential targets of prosecution.

Criminalization also endangers confidence in the privacy of public health records. There are reported instances of law enforcement personnel seeking health department testing or treatment records in order to establish that a defendant was aware of being HIV-infected at the time of the allegedly criminal act (36). Even if rare, such events have the potential to resonate widely among those at risk, as happened in the case of a health department worker in Florida who improperly released HIV records (37). Any use of public health data for law enforcement purposes represents a profound threat to public health, because it compromises the principle that public health data are sacrosanct for any purpose other than public health.

Privacy, never robust in health practice, has become even more at risk. Although another legislative season has now passed without federal action, some of the bills proposed in Congress last year would essentially have stripped out the heightened protection for HIV confidentiality in state law. The CDC's Model State Public Health Privacy Act (38) is an important proactive initiative, and would protect records in public health hands, but it would have to be passed by fifty states and could still be overridden by Congress. More importantly, it does not apply to HIV records in private hands, where the most damage tends to arise.

Nor can one justly feel sanguine about the national commitment to nondiscrimination on the basis of HIV. The Supreme Court did rule that a person with asymptornatic HIV can be considered disabled under the Americans with Disabilities Act (39). The Court did not rule that every person with HIV is to be deemed disabled, and the justices were divided almost evenly on what is known as the "direct threat" issue: when discrimination is justified because the person with HIV poses a significant risk to others. In the lower courts, there have been several cases that recall the worst days of the early epidemic: a man fired from his job in the produce section of a market because he refused to submit to a test for HIV (40); a child with HIV kept out of a karate class (41); a family not permitted to provide foster care because one child already in the family has HIV (42). All these patently unnecessary acts of discrimination were upheld by courts at least in part on the ground that they were justified by the risk of transmission.

The most dangerous threat to voluntarism has been the suggestion that prior informed consent for testing for pregnant women be replaced by what is euphemistically called an "informed right of refusal" (43). The proposal is a response to the widespread unwillingness of obstetricians to offer HIV tests, which is blamed on the supposedly onerous requirements of counseling and informed consent enshrined in testing guidelines and state HIV testing laws. This proposal exemplifies the problem of narrow framing. By focusing on the obstetrical setting, and looking for an expeditious way to address obstetricians' concerns, proponents of the informed right of refusal approach have underestimated the overall costs of the change, and failed to consider cheaper alternatives.

There is little or no evidence that the requirement of prior written consent retards testing other than by deterring the provider from making the offer. In fact, testing guidelines could be changed to make testing easier for health care providers to offer without eliminating explicit prior consent. There is, for example, no need for full risk-reduction counseling in the prenatal setting, where the purpose of testing is to provide medical care and prophylaxis. Likewise, the specific requirements imposed by state law have been exaggerated: as a general matter, state testing laws require no more than that patients get some sort of written or oral information about the test, and the opportunity to sign a specific consent form, before being tested. In practice, then, HIV testing statutes do not forbid making the offer of testing "routine," nor do they preclude counseling that emphasizes the benefits of testing or that replace oral with written information. Provider motivation to test is very important, but there are more ways to deal with it than just by reducing patient control (44,45).

The reason to look for alternatives is clear when one looks beyond the obstetrician's office. The move away from prior explicit consent poses an enormous threat to the structure of HIV privacy law in this country. State HIV testing laws do not require much in the way of specific behavior, but they do generally require a signature on a specific release before a test may be performed. Lazzarini and colleagues have examined the potential impact of a change to an "opt-out" system, and have preliminarily determined that more than thirty states would have to change their state laws to allow it. (oral communication, Vita Lazzarini, J.D., MPH., March 2000).

The prospect of states revisiting their basic HIV confidentiality laws is one that anyone concerned with voluntarism should view with alarm. The coalitions and conditions that produced these laws during the mid to late 1980s are not necessarily present today. There is no guarantee that legislatures would restrict the change to pregnant women, and organizing and finding the resources to fight a new battle over the basic rules of HIV testing and privacy would be an enormous challenge for public health, HIV, and civil liberties advocates. If we can increase prenatal testing rates without eliminating prior written consent, a broader view of the state of voluntarism suggests making a serious effort to do so.

Recognizing the symbolic dimensions of surveillance can be practically useful to policy makers. It shows, for one thing, that as with individual behavior, the problem is not necessarily name-based surveillance itself. Opposition to name-based surveillance, that is, is to some degree a sort of referred pain from other injuries, and there is at least some room to advance name-based surveillance by paying more attention to those other problems. If the "problem" is deep concern about voluntarism, public health officials can couple support for name-based surveillance with measures to enhance privacy and discrimination protection in the law, and to increase patient protection in the testing process. They can be heard more strongly in the criminalization debate. They can move from justifying name-based surveillance on the basis of an end to exceptionalism to emphasizing the continuing need to address both the threat and perception of social risk. None of this represents a resolution to the political debate about surveillance, but such a resolution is hardly realistic: politics is a process; a better understanding of the inputs to the process will usually lead to better, if imperfect, outputs.

REFRAMING THE DISCUSSION: FROM BARRIERS TO CONDITIONS

The unstated premise of this essay has been the importance of cognitive heuristics, not just in day-to-day life but also in policy-making and research. Just as individuals use mental short cuts to assess their social risks, so policy-makers and researchers rely on accepted metaphors and analytic categories to set their agendas. Heuristics are at once necessary, useful and, by definition, limiting (46). In the debate over surveillance, there has been a tendency to conceptualize name-based reporting as a meaningfully distinct practice and to ask whether by itself it operates as a barrier to testing and other early intervention strategies. This essay has discussed the limits of this sort of mental and rhetorical shorthand, and how it has hurt the debate.

A new heuristic may be helpful, one that takes a more holistic approach to assessing the interrelationship of policies, social conditions, incentives and disincentives to testing, and other elements of an early intervention regime. Testing rates depend upon social risks, but also upon cost, convenience, perceived benefits, and the usual psychological processes triggered by the prospect of diagnosis with a fatal disease (47).

Rather than relying on the metaphor of barriers to early intervention, this essay suggests taking a page from the Institute of Medicine's definition of the mission of public health: creating the conditions in which people can be healthy (48). An early intervention policy, regardless of its specific components, will succeed only if it creates a climate in which people with and at risk of HIV have (1) the opportunity to obtain testing and other services; (2) the information necessary to assess and fulfill their needs; (3) the motivation to use the information and take up the opportunity; and (4) the confidence to run the real and perceived risks entailed in doing so.

HIV prevention efforts have done very well in providing opportunities for and information about HIV testing. Motivation has historically been harder to foster (49,50). Real access to better treatment options could be an important motivator, but for too many people, knowing one's HIV status is still just less important than other issues on the survival agenda.

"Confidence" could well be seen as simply an aspect of motivation, but for heuristic purposes it is useful to treat it as distinct. It evokes the individual's affective analysis of his or her situation, but at the same time is intended to suggest the need for collective social action: instilling confidence in the person at risk requires that individual clinicians and other health and service providers help people at risk to have the faith that something positive can come out of being tested, and also that we "change the world" to make testing and early intervention safer in the first place. As Freudenberg wrote: "The reality is that a world without AIDS, or a world with this epidemic under control, will look very different. AIDS educators need to help people visualize this world and connect their daily lives to making it happen. It will be a world where every one is entitled to comprehensive education about sexuality, drugs, and health; a world where those who need treatment for drug addiction can get it on demand; a world where basic health care is a right, not a privilege; a world where gay men and lesbians, women and people of color, are not discriminated against; a world where alternatives to drug use exist for the young people of this country; a world where no one has to die on the streets because there is no home for them" (51).

CONCLUSION

A review of the name-based surveillance controversy shows that we still have much to learn about how individuals cope with the prospect of being diagnosed with HIV, and, more importantly, requires us to examine the social environment in which surveillance and testing are experienced, and in which policy is made. If we can understand the logic of the surveillance debate, we can get a better sense of what we need to know about how our society structures the experience of the disease in ways that can enhance, or hinder, prevention. Regardless of the outcome of the current policy dispute (1), the conditions that make name-based surveillance a sensitive issue will remain, and remain important to understand.

Acknowledgments: The author thanks Kevin De Cock, Ron Valdiserri and the anonymous reviewers for their challenging comments, and Lionel Artom-Ginzburg for assistance in research and manuscript preparation.

Address correspondence and reprint requests to Scott Burris, J.D.,
Temple University Beasley School of Law, Temple University,
1719 N. Broad Street, Philadelphia, PA 19122;
e-mail: Burris@vm.temple.edu

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