Social Risk, and Symbolism: Framing the Analysis for Research
JAIDS Journal of Acquired Immune
Deficiency Syndromes 25:S120-S127 December, 2000 Lippincott
Williams & Wilkins, Inc., Philadelphia
Temple University Beasley School of Law, Temple
University, Philadelphia, Pennsylvania; and Center for Law and
the Public's Health, Georgetown and Johns Hopkins
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
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
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
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
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
SOCIAL RISK AND NAME-BASED SURVEILLANCE IN A POLITICAL
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
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
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
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
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,
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
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
"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).
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
Temple University Beasley School of Law, Temple University,
1719 N. Broad Street, Philadelphia, PA 19122;
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