Early Detection of HIV: Assessing the Legislative Context
Journal of Acquired Immune Deficiency Syndromes 25:S144-S150
December, 2000 Lippincott Williams & Wilkins, Inc.,
Stephen F. Morin
AIDS Policy Research Center, University of California,
San Francisco, California, U.S.A.
Early detection of HIV has important implications for both
prevention and treatment. Promoting HIV testing, and thereby
early detection, however, is a complicated task that must
balance the interests of public health, personal privacy, and
legislative efforts to curb transmission. This article
assesses the legislative context within which public health
officials must operate to promote early HIV identification.
Specifically, the article reviews United States laws regarding
HIV testing passed over the course of 3 years, 1997 to 1999,
at the state-not the federal-level. The new laws demonstrate
such major themes as limiting confidentiality of HIV test
results, mandating name-based HIV reporting, partner
notification and newborn testing, and criminalizing
nondisclosure of HIV status in sexual and needle-sharing
situations. The article evaluates these new laws and their
potentially negative impact on early detection, and assesses
implications for practices such as informed consent for HIV
testing. Outcome evaluations of newly implemented state laws
are recommended. Policy makers must be aware that these policy
changes can either encourage or discourage HIV testing. Key
Words: HIV testing-Confidentiality of HIV test
results-Name-based HIV reporting-Partner notification-Criminal
penalties for nondisclosure-HIV legislation.
Throughout its history, the AIDS epidemic has sparked
intense political debate about the role the government should
play in addressing public health challenges (1). Lawmakers at
every level have found it difficult to strike a balance
between invoking the extensive powers given to health
officials to protect the public health and protecting the
privacy and dignity of people living with HIV and AIDS.
Legislative controversies have often involved policies
regarding HIV testing: who should be tested, when people
should be tested, where testing should be made available, and
who should have access to test results. Today, however,
medical advances have altered the landscape and vastly
increased the potential importance of early HIV detection,
returning the focus with new intensity to HIV testing
This paper describes the legislative environment that has
emerged over the last several years in the United States,
particularly in state legislatures. Research presented here
identified a significant trend toward more mandatory testing
for broader classes of people and away from protecting the
confidentiality of HIV test results. New laws make it apparent
that in many instances legislators may not have considered
that their actions may discourage early detection of HIV
infection. Thus, recent legislative trends may raise new
barriers to the generally acknowledged goal of getting more
HIV-infected Americans identified and into treatment as early
In the United States, state and local health departments
have historically handled local implementation of public
health policies, whereas the federal government has provided
resources, technical assistance, program guidance, and
information on national trends. In assessing the current
legislative environment, this analysis focuses primarily on
legislative action by states. The National Conference of State
Legislatures maintains a web-based summary of state
legislation specifically addressing HIV testing from 1997
through 1999. In this article, only legislation that was
passed by state legislatures and signed into law is
considered. The general themes and purpose of HIV testing
legislation are reviewed and analyzed.
The analysis identifies several major themes: limiting
confidentiality of HIV test results, mandating name-based HIV
reporting, partner notification and the testing of newborns,
and criminalizing nondisclosure in sexual and needle-sharing
situations. Proposals currently before the United States
Congress reflect many of these same themes. This article
assesses these public policies within the context of new HIV
treatment options and the emerging public health priority of
promoting early HIV detection.
State and federal governments promote the public health in
a number of ways. One approach targets individuals and is
designed to shape behaviors for the benefit of public health.
Examples include laws prohibiting drunk driving and outlawing
the sale of cigarettes to minors, as well as speed limit and
seat belt laws designed to reduce automobile-related injuries.
Regarding HIV, all 50 states have laws against its intentional
Another approach entails government-funded programs that
directly promote public health. Examples include social
marketing campaigns to reduce drunk driving or to reduce
demand for tobacco products. Similar marketing campaigns may
be used to promote knowing one's HIV status, to reduce
HIV-related stigma, and to promote abstinence or condom use.
Other government programs may promote public health by
increasing availability of safety devices such as child safety
seats to prevent injury. Programs to make condoms or clean
needles available are HIV-related examples. These approaches
attempt to use the resources of government to change the
behavior of groups or communities, with the goal of advancing
Public health policies may also directly affect the
physical environment in which these behaviors occur. For
example, water is fluoridated to improve dental health. The
automobile industry is regulated to require certain safety
standards, e.g., air bags and seat belts. Similar health and
safety regulations are imposed on the airline industry, e.g.,
carry-on luggage requirements and nonsmoking policies. In
addition, there are many examples of workplace health and
safety standards, many of which, such as ergonomic standards,
are the subject of controversy and public debate. Screening
the blood supply for HIV and other blood-borne pathogens is an
HIV-related example of an environmental intervention that has
proven to be highly effective, In short, legislatures
routinely debate how best to promote the public health, and
employ several different methods of intervention.
Substantial investment in AIDS research over two decades
has brought about expanded HIV treatment options
that not only have brought new hope to people living with HIV
but also have required new government policies and altered the
impact of old laws and policies. Pessimism, which for many
years characterized scientific discussions on HIV disease, has
now given way to restrained optimism about controlling viral
Under new guidelines for the treatment of HIV-infected
individuals (2,3), decisions such as when to begin therapy or
to change drug combinations are made based on monitoring viral
load, T-cell counts, and physical symptoms. In general, these
recommendations argue for earlier and more aggressive
treatment. The long-term benefit of treatment for healthier
individuals with T-cell counts >500 has yet to be
documented. Thus, decisions about early intervention for these
asymptornatic individuals must balance a number of factors
that influence risk and benefit. But for asymptomatic
individuals with T-cells counts <500, or anyone with a high
viral load, the guidelines recommend treatment be offered.
Therefore, where symptoms appear before HIV testing takes
place, an opportunity to consider the full range of treatment
options has been missed. In light of such HIV treatment
advances, policy makers must reassess how best to promote the
public health goal of early HIV detection. Social marketing
campaigns and other educational approaches are needed (4), as
well as laws and policies that enhance the potential personal
benefits of being tested.
The new optimism over early intervention with combination
therapies has placed an increased emphasis on the role of
testing in both treatment and prevention. Often, HIV testing
serves as the necessary gateway to treatment. However, most of
the legislation regarding HIV testing dates to the middle to
late 1980s, when the HIV antibody test was new and effective
medical treatments had not yet been developed. At that time
antibody testing was similar to genetic testing in that the
results could be psychologically distressing but it was not
clear what useful medical options might be available. Thus,
early laws placed emphasis on pretest counseling and informed
Publicly supported testing and counseling programs began at
the time the HIV antibody test was licensed in 1985, primarily
to divert people from donating blood as a means of finding out
their HIV status. This practice was dangerous because of the
so-called window period between infection and the development
of measurable antibodies (5). Later, testing, in combination
with counseling, became a vital part of the public health
strategy to prevent new infections. Even in the absence of
effective medical treatments, health departments believed that
knowledge of serostatus could bolster resolve to practice safe
behaviors, encourage HIV-positive individuals to protect their
loved ones, and encourage HIV-negative individuals to stay
uninfected. Research studies have confirmed the importance of
counseling and testing as a prevention intervention (6).
The Centers for Disease Control and Prevention (CDC)
estimates that 650,000 Americans are HIV-infected and know
their status and are therefore able to seek treatment (7). One
study in the United States found that 36% of individuals
diagnosed with AIDS were first tested for HIV within 2 months
of their AIDS diagnosis, and 51 % within a year of AIDS
diagnosis (8). Although these data were gathered from
1990-1992, it remains true that many individuals lose the
documented benefits of early intervention because they are
tested so late in the course of their infection.
New treatment options are also changing the content and
importance of test-related counseling. For those who test
positive, greater emphasis needs to be placed on scheduling
additional testing to determine the length of time the
individual has been infected, the damage done to the immune
system, and the amount of virus in the blood. Thus, in
addition to preventing further transmission, counseling
services now seek to reduce the time between HIV testing and
initiating primary care for HIV disease.
Increasingly, scientists, public health officials, and
advocates have come to consensus about the importance of early
HIV detection for both access to treatment and prevention (9).
However, these same players, as well as legislators, must
understand concerns about HIV-related stigma and the
confidentiality of HIV test results before they can
effectively promote HIV testing to at-risk populations.
State legislatures are clearly moving toward limiting
rather than expanding HIV-related confidentiality statutes.
This trend may work at cross-purposes to the goal of promoting
early HIV detection. Confidentiality protections for HIV test
results are an important public policy for establishing
"risk-free" environments in which individuals will
be more inclined to learn their HIV status and seek medical
After the HIV antibody test was first licensed, state
legislatures and the CDC developed an alternative system of
publicly funded testing sites where individuals could be
tested either anonymously or with strict confidentiality
protections. Strong protections for more traditional sites
also were adopted in most instances. To further promote
confidence among potentially infected individuals that HIV
testing would remain voluntary and would not result in harmful
legal or personal consequences, state laws were adopted that
required specific informed consent for HIV testing (10) and
provided penalties for wrongful disclosure of HIV status.
These public policies were established to preempt potential
negative consequences to testing that might discourage it.
An analysis of recent state legislation addressing HIV
confidentiality is presented in Figure 1. A clear trend exists
in bills signed into law from 1997 through 1999 toward
amending confidentiality statutes to permit exceptions, rather
than expanding confidentiality protections, e.g., increasing
the penalty for unlawful disclosure (Information obtained from
the StateServ web site; address: http://stateserv.hpts.org/pubtic/pubhome.nsf).
Most of these limitations involve laws designed to protect
so-called Good Samaritans, such as police, corrections
officers, and emergency medical technicians (14 of 28), or to
test criminal offenders or those accused of criminal offenses
(9 of 28). The remaining laws are on newborn testing (2 of 28)
and name-based HIV reporting (3 of 28), both of which will be
Recent State Legislation on HIV Confidentiality
"Good Samaritan" laws are primarily a response to
the concerns of emergency medical personnel and law
enforcement officers who are distressed by the potential for
HIV infection from exposure to blood or other bodily fluids.
In general, these laws allow testing so that the exposed
person can know the HIV status of the person who is the source
of the exposure, even without his or her consent. These laws
differ from CDC guidelines for postexposure prophylaxis in
occupational settings (11), which do not require involuntary
testing of the individual who is the source of the exposure.
Instead, guidance is given to assist the clinician in
assessing the severity of the potential risk and in offering
or recommending postexposure treatment.
Testing of criminal offenders involves mandatory testing of
prison inmates or, in some cases, laws permitting testing of
individuals accused of specific acts of sexual assault and
disclosure of serostatus to victims. Legislative debates on
the emotional issue of sexual assault involve many of the same
arguments as with emergency medical personnel. At present, the
CDC has not developed specific guidelines for postexposure
treatment after sexual assault, and developing such guidance
is complicated by the criminal justice context of these cases.
Another legislative and administrative trend is toward
name-based HIV case reporting, a policy that has the potential
to discourage early HIV testing. Although AIDS cases have
always been required to be reported, cases of HIV infection
have been considered differently because patients are not yet
seriously ill. Proponents of HIV name-based reporting argue
that HIV should be treated like any other sexually transmitted
disease (STD) for which names are reported. They also argue
that having the name assists with referral to medical care,
risk reduction counseling, and partner notification. Opponents
argue that the public health benefit of name-based reporting
is outweighed by the deterrent effect it has on HIV testing
and early identification. They also contend that name-based
reporting is not necessary to achieve referral to medical
care, risk reduction counseling, and/or partner notification.
Whether the benefits to individual and public health outweigh
the risks is still the subject of heated debate (12).
The name-based reporting issue has re-emerged largely
because the new treatments have changed AIDS surveillance.
With the development of more effective therapies, which
significantly delay the onset of AIDS for many people, experts
believe the number of AIDS cases and deaths are no longer
reliable measures for monitoring the epidemic (13). Recently,
the CDC recommended that all states implement HIV case
surveillance as an extension of AIDS case surveillance, which
is a name-based reporting system (7). Recognizing that
name-based reporting is not acceptable in some states, the CDC
is providing technical assistance to those states implementing
unique coded systems (14). By the end of 1999, 37 states had
adopted or were implementing name-based HIV case surveillance,
6 states had adopted or were implementing unique coded systems
and the issue remained unresolved in the remaining 7 states
As the controversial issues surrounding surveillance are
debated in legislatures, policy makers would be wise to
consider the implications of such policies for early HIV
detection. Although proponents argue that names assist with
referral to medical care, a recent study found that in
name-based reporting states follow-up contacts were not
associated with moving people into care earlier (16). The
question becomes, then, is name-based reporting the deterrent
to HIV testing that its opponents argue it to be?
The answer to this question appears to depend on the target
groups that may be priorities for promoting early
identification. A study of six states that adopted name-based
HIV reporting looked at the 12 months before and after
implementation of the new policy and found the overall level
of testing went up in three states, was level in two states,
and declined in one state (17). However, several studies have
found that the potential deterrent effect of name-based
reporting is the greatest in groups at highest risk of HIV
infection. Though knowledge of state policies was low among
all individuals never before tested, the deterrent effect was
minimal on heterosexuals at STD clinics, moderate among
injection drug users, and highest among men who have sex with
men (18). A number of other studies have found a potential
deterrent effect among men who have sex with men (19-23) and
for Latinos and African Americans (24).
A recent San Francisco study found that HIV name-based
reporting might have a particular deterrent effect on those at
very high risk (25). The study examined gay men who were
repeat anonymous testers and also reported at least one
episode of unprotected anal sex with a partner who was
HIV-infected or of unknown serostatus in the last year. It
found that 68% would not be tested if names were to be
reported. Even after explaining the public health benefits of
name reporting, only 58% said they would be tested. This
suggests that among those at greatest risk a change in
attitude toward testing, and toward the public health system
as a whole, must precede the change to a name-based reporting
system. Otherwise, behavior may undermine the benefits of
testing and HIV surveillance. As critics have noted, moving to
a system of name-based HIV surveillance may drive the epidemic
Another trend identified in state legislation is a move
toward mandating health department-mediated partner
notification. Currently, all states receiving CDC funding for
HIV prevention activities are required to establish procedures
for the confidential, voluntary notification of sexual and
needle-sharing partners (26). These partner notification
services, which are perhaps better termed "partner
counseling" services, are considered part of primary
prevention efforts (27).
The new treatment opportunities have been used by some to
argue for a return to a narrow "find-and-treat" STD
model for responding to the HIV epidemic. Some members of
Congress, who argue that AIDS should be treated like other
STDs, are advocating legislation that would require states to
adopt name-based reporting policies and shift prevention
resources to contact tracing and health department-mediated
partner notification programs. Other members of Congress
believe that, although they are an important part of HIV
prevention, partner-counseling services must be assessed in
terms of their relative priority. The CDC has established a
process for HIV prevention community planning where these
kinds of decisions about resource allocation for maximum
prevention effectiveness are made.
Two states have recently moved to mandate name-based HIV
reporting and couple it with health department-mediated
partner notification. Advocates for this policy argue that
having the name of the infected person allows the health
department to notify sexual and needle-sharing partners and
urge these people to get tested themselves. However, recent
research (16) found that individuals who had been tested
anonymously reported notifying as many sexual and
needle-sharing partners as those whose names had been reported
to health departments. Mandatory approaches to contacting
partners and connecting them to HIV services are potentially
problematic because voluntary cooperation is needed for these
services to be effective. Partner notification can be done
only as a voluntary activity. These laws may be viewed as
barriers to early detection if they are perceived as
"mandatory" by people living with HIV; they may be
accepted as a valued service if perceived as voluntary, with a
goal of assisting people in preventing further transmission
CRIMINALIZATION OF NONDISCLOSURE
As of 1999, 31 states had enacted legislation making
nondisclosure of HIV status in certain situations a crimi-nal
offense (29). An analysis of state legislation enacted between
1996 and 1999 reveals a distinct trend toward more (from 26 to
31 states) and tougher "willful exposure" laws. The
interest in criminal statutes has been fueled by highly
publicized cases of multiple HIV transmission by a single
person in Missouri and in New York State (30,3 1). These laws
differ from state to state; some are broad in scope, whereas
others are narrowly focused on specific sexual acts. Some
states wrote laws with specific provisions regarding donating
blood or organs, sharing needles, practicing prostitution,
soliciting prostitutes, and potentially transmitting HIV to
corrections or emergency health workers by persons with
knowledge of an HIV/AIDS diagnosis. An analysis of these state
statutes indicates that the specific sexual behaviors
prohibited without disclosure are often poorly defined
Research has not yet gauged the extent of knowledge of
these statutes among those HIV-infected, nor has it tried to
assess the statutes' deterrent impact. One state, which has
maintained confidential HIV surveillance records for many
years, recently enacted a law that requires public health
officials to reveal previous HIV testing information about
people charged with a sexual offense when requested by the
criminal justice system. Under this law, an individual
convicted of a sexual offense can be sentenced to three times
the maximum penalty for that offense if public health records
show the individual had been notified of his or her HIV
infection prior to the crime (34). Because the legislation
applies regardless of when the previous HIV test took place,
it contradicts the informed consent for the initial HIV
testing, which was intended for public health purposes only.
While the legislature is acting to punish particularly
deplorable criminal conduct, the unintended consequences also
need to be assessed.
This trend toward criminalization of nondisclosure or
"willful exposure" has not been studied in terms of
its effect on early detection of HIV. However, it seems
logical to argue that increasing an individual's risk of
enhanced criminal penalty could deter HIV testing and early
detection. In addition, retroactively invalidating the
conditions of informed consent for testing has the potential
to undermine trust in the public health system.
NEWBORN TESTING AND REDUCING PERINATAL TRANSMISSION
Three states now require the HIV-testing of newborns,
hoping this practice will allow for early access to treatment
for infected infants and provide an opportunity to caution
mothers about potential transmission to uninfected infants
through breast feeding. Testing of new-borns is actually
testing the antibody status of the mothers. Thus, opponents
note that requiring antibody testing of newborns is actually
mandatory testing of the mothers. They argue for voluntary
approaches they believe are more likely to encourage the
cooperation of pregnant women. These newborn testing laws have
been controversial. Congress has also adopted targeted goals
for reduction of perinatal transmission, which if not achieved
would trigger mandatory testing of newborns as a condition of
receiving HIV-related federal funding (Ryan White CARE Act
Reauthorization, 42 USC Sec. 300ff34).
Advances in treatments have also resulted in medical
options to reduce the risk of transmission from an infected
mother to her newborn through administering antiretroviral
treatment to the mother (35). Since these advances, the number
of perinatal cases of AIDS has dropped by 75%, from a high of
between 1,000 and 2,000 in the early 1990s, to between 250 and
500 in 1998 (36). This progress has led to discussion of the
possibility of eliminating perinatal cases of HIV in the
United States. These advances have also led to legislation in
A recent Institute of Medicine Committee on Perinatal
Transmission of HIV report (35) also addressed the
possibilities for reducing perinatal HIV transmission. The
committee recommended a national policy of
"universal" HIV testing for pregnant woman as a
"routine" procedure, including posttest notification
for women who test positive. These recommendations have
several implications for state legislation. In order to
implement such guidelines fully, many states would need to
amend HIV testing statutes to remove a pretest and posttest
counseling requirement. The implications for informed consent
are even more important.
Currently, 33 states require specific informed consent for
HIV testing, often in writing. The implication of routine
testing is that it has raised the debate about moving from
"informed consent" to "informed right of
refusal." A study found that most people would accept HIV
testing if they need to "opt out" of the test while
fewer would be tested if they needed to "opt in" to
taking a test by request (37). The goal of moving people who
are infected into early care is in part motivating the policy
discussions toward removing the barriers to testing. Thus,
pretest counseling and specific informed consent are now
viewed by some as barriers to HIV testing.
The Institute of Medicine panel's conclusion that specific
informed consent may be viewed as a harmful barrier to testing
is a source of concern to those who have advocated specific
informed consent and civil penalties for wrongful disclosure
as deterrents to rogue testing (38). At this point it is not
clear how these issues will play out in a legislative context
over the next several years. And, it is not clear how these
policy trends will effect voluntary early HIV identification.
IMPLICATIONS AND CONCLUSION
It is now widely recognized that new treatment
opportunities offer hope to those who are infected with HIV.
That hope can only be realized if systems are in place that
encourage individuals at risk to seek HIV testing, as well as
to make maximum use of health care services as early as
possible in the course of the infection. This article outlines
some of the legislative trends that have emerged in the last
several years in state legislatures, and suggests that some
recently passed laws could be barriers to, rather than
facilitators of, early HIV testing. If these laws discourage
testing, the question becomes what price does public and
personal health pay for the stricter legal environment.
In order to consent fully to HIV testing, individuals must
understand the benefits that may result from medical treatment
and the potential to prevent further HIV transmission.
Potential risks of HIV testing include possible psychological
distress associated with a positive test result, as well as
potential limitations in employment and insurance coverage.
State legislatures have added to these risks the requirements
that one's name be reported to the health department, and that
one may be required to disclose the names of sexual or
needle-sharing partners. In addition, once an individual is
aware of infection, the potential exists for criminal
penalties for nondisclosure of HIV status in certain
situations. These added risks and requirements create an
atmosphere in which at-risk individuals and communities often
draw the conclusionrightly or wrongly-that HIV testing is not
in their best interest.
Much of the state legislation on HIV testing from 1997
through 1999 expresses the goal of helping HIV-infected people
obtain care. The effect of many of these policies, however, is
not well known or evaluated. At the federal level, states are
often referred to as laboratories for new ideas and policies.
Thus, it seems important to direct greater attention to the
careful evaluation of these statelevel policy interventions.
Scientists and public health officials must help determine
whether legislated policies increase or decrease early
identification of HIV as an important outcome measure in
assessing such initiatives.
Developing effective policies to promote early
identification of HIV will require consultation, discussion,
and compromise by public health officials at all levels of
government and by affected individuals, communities, and other
stakeholders. Legislative policy makers also need to be part
of the collective discussions on ways to promote early HIV
Acknowledgments: This analysis was in part supported by the
UCSF Center for AIDS Prevention Studies, a grant from the
National Institute of Mental Health (MH42459) and in part by a
grant on "Understanding the Impact of New Treatments on
HIV Counseling and Testing" from the Henry J. Kaiser
Family Foundation. An earlier version of this paper was
presented at the Early Detection of HIV Conference sponsored
by the Office of AIDS Research at the National Institute of
Mental Health and the Center for HIV Identification,
Prevention and Treatment Services at UCLA, July 29-30,1999.
The author thanks Chris Collins, Mark Trautwein, and Charles
Everett for their assistance with preparation of this paper.
Correspondence to Stephen F. Morin, Ph.D.
Director, AIDS Policy Research Center
University of California, San Francisco
74 New Montgomery St, Suite 600
San Francisco, CA 94105, U.S.A.
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