Law and the Social Risk of Health Care: Lessons from HIV Testing
Burris, Scott, Albany Law Review
To have the virus that causes AIDS, or the gene that predicts Huntingdon's, or a variety of other diseases that are particularly frightening, expensive, or stigmatized, is to face serious social as well as health threats.(1) Even those merely at risk of cancer or HIV, or family members or friends of patients, may face mistreatment in social or work life arising from what the Supreme Court has called "society's accumulated myths and fears about disability and disease."(2) The marginalization, sometimes even demonization, of people with diseases like tuberculosis and syphilis has been well documented by historians.(3) Today, the notion that diagnosis or treatment of such conditions can trigger social harms is widely accepted.(4) It is likewise accepted that social risk can deter people with, or at risk of, threatening conditions from seeking care or from complying with public health directives.(5) In response, an impressive structure of laws and institutional policies has been erected to protect the privacy of various bits of medical information. The Americans with Disabilities Act (ADA)(6) and dozens of state laws were intended to protect people with a broad range of conditions--including HIV, mental illness, and at least some genetic conditions--from discrimination in employment, public accommodations, and government programs.(7) Mental health records enjoy special privacy protection throughout the country.(8) Most states have passed laws protecting the privacy of HIV-related information, and have passed or are considering genetic privacy and discrimination statutes.(9)
Despite the enduring importance of social risk in health policy and law, basic questions about the phenomenon have long gone unanswered:
* What is the incidence and character of social mistreatment based on disease or genetic trait?
* How do people who are socially vulnerable because of a health trait perceive their peril? Are current policies effective in reducing their fears or influencing their behavior?
* How, if at all, is law useful in influencing socially threatening people (i.e., people, such as employers, in a position to mistreat those at risk)?
Without answers to these questions, it is difficult even to define concrete goals for a policy to reduce social risk, let alone to begin to measure its success and make it work better. Such thorough-going imprecision is harmful in several ways: it raises the real danger that policies against social risk are not actually helping those who need help most; it may allow unfounded concerns about social risk to interfere with beneficial policy initiatives, such as enhanced physician access to health records; and, it offers no response to a powerful tide of political and scholarly opinion that categorically opposes government regulation generally and discrimination laws like the ADA in particular.(10) In this Article, I raise these basic questions in an analysis of the response to a leading instance of social risk as a policy consideration: HIV testing.
HIV testing and counseling has been the centerpiece of the public health effort against HIV in the United States, yet by some estimates at least forty percent of those who are at risk of acquiring HIV have not been tested.(11) In at least some important populations there is not even an indication of a positive trend.(12)
It has long been believed that concerns about privacy and discrimination play a significant role in the decision to be tested.(13) It has, likewise, been thought that legal policies influence the extent and expression of these concerns. Laws that assure confidentiality and protect people from discrimination are said to reduce resistance, while laws that require reporting of HIV test results, or other stigmatizing measures, deter testing and other behavioral changes urged by public health authorities.(14)
The notions that social factors influence testing, and legal policy can help, or aggravate, the problem, are plausible. But are they true? More importantly, if they are true, how are they true? We do not know. Research on the socio-legal aspects of testing behavior has almost without exception lacked a model of the decision to get tested, and has neglected entirely basic questions of how law might be useful to people worried about the social consequences of being tested. More than ten years into the counseling and testing program, we know little more than that anonymous testing seems to attract some people who would otherwise forego or delay testing, and that many more people respond with anxiety when prompted to think about privacy and discrimination. This was important information when it was published, but more is needed today. Our uncertainty about what exactly people are afraid of, and of how law might reduce these fears, increasingly hampers policymakers, lawyers, and public health workers trying to achieve valuable marginal gains in testing.
In the first part of this Article, I will review the key elements of the legal program to encourage HIV testing.(15) Readers for whom this is familiar ground may wish to skip to Part II, a review of the social science literature addressing the impact of legal factors and social risk concerns on the willingness to be tested.(16) Although helpful in many respects, I conclude that this work suffers two main flaws: too simple a model of the social risk of testing, and no model whatsoever of how law might operate in individuals to overcome social risk concerns sufficiently to eliminate them as a significant barrier to testing.
In Part III, I present an heuristic model of social risk and its legal management, based on the theories of the French sociologist Pierre Bourdieu.(17) The model is designed to facilitate the use of existing data and established theories about human behavior, particularly the rich literature in sociology and psychology on stigma. Thus, the model operates as a practical tool for effectively using a range of complementary theories to illuminate a practical problem of social and legal policy. Part III also provides two other analytic tools necessary for an effective analysis of social risk. The first is a preliminary definition of the concept itself. Social risk includes both an objective component--the prevalence of harmful attitudes and behaviors in a population--and a subjective one--the perception of risk among those who have a disfavored condition. My discussion of HIV testing policy illustrates the importance of this distinction. My analysis also suggests the need for new concept in the analysis of law's influence on behavior. Deploying law to counteract the effects of social risk on health care consumption presents a somewhat unusual case, one that falls between the cracks of socio-legal theory. Theories about compliance might explain why the ADA prevents a dentist from discriminating against a patient with HIV, and disputing theory will explain why most victims of this sort of discrimination do not sue, but neither addresses the question of why and how a person who is protected by law and who wishes to avoid an injury will integrate law into a prospective decision to run the social risk of testing. For this, I suggest, we need a new concept, which I am calling "reliance."
I conclude the Article with a discussion of its principal implications for HIV testing research and policy, and for the study and control of social risk generally.(18)
I. "THE ANTI-STIGMA PROJECT" DESCRIBED
There is no fundamental novelty in the stigmatization of HIV, nor in the recognition that stigma could interfere with the prevention of disease.(19) Long before AIDS, states commonly had laws protecting the privacy of medical information reported to health departments, and the Supreme Court had suggested that such information enjoyed some constitutional protection.(20) Yet, the social response to HIV has included an unprecedented amount of legal protection of the social status of the infected and those at risk.(21) This response, which I refer to as "the anti-stigma-project," consists of a web of federal, state, and local laws to protect people with HIV from discrimination in employment, housing, and public accommodations; provisions in the federal and many state constitutions that have been interpreted in court to protect HIV-related medical information; and statutes in most states that variously protect medical privacy and limit HIV testing in the absence of informed consent.(22) This project also has had a significant negative component: concerns about stigma have been consistently raised in opposition to other coercive legal measures, such as mandatory testing and a whole range of criminal laws directed at conduct that was thought to contribute to the spread of the disease.(23)
The anti-stigma project can readily be justified in moral terms: it is unfair to mistreat people based on arbitrary and irrelevant differences and important, in civil society, to protect the privacy of sensitive personal information. More commonly, however, the antistigma project has been justified on utilitarian grounds: it has been argued that behavior that stigmatized or punished people with, or at risk of, HIV would reduce their willingness to cooperate with public health measures, frustrating, rather than assisting in the control of, the epidemic.(24)
A. Disability Discrimination Law
Undoubtedly, the most significant legal development in the history of HIV was the treatment of HIV as a handicap as defined in statutes protecting disabled people from discrimination.(25) This move began among litigators and judges, as lawyers representing people with HIV looked for sources of law that might protect their clients from the discrimination that began occurring almost as soon as the disease was identified.(26) Federal laws protected the handicapped from discrimination in programs receiving federal funds, including schools, and many states had laws that protected the disabled in employment and public accommodations.(27)
The statutory language defining handicap was usually quite broad. In Section 504 of the Federal Rehabilitation Act,(28) for example, a "handicapped individual" was any person who "has a physical or mental impairment which substantially limits one or more . . . major life activities. . . . a record of such an impairment, or . . . is regarded as having such an impairment."(29) The key legal question--whether Congress had intended to include communicable diseases within the definition--was settled by the Supreme Court in a 1987 case about a teacher with tuberculosis, School Board of Nassau County v. Arline.(30) Noting that the "isolation of the chronically ill and of those perceived to be ill or contagious appears across cultures and centuries, as does the development of complex and often pernicious mythologies about the nature, cause, and transmission of illness."(31) The Court further explained:
Allowing discrimination based on the contagious effects of a
physical impairment would be inconsistent with the basic
purpose of [sections] 504, which is to ensure that handicapped individuals
are not denied jobs or other benefits because of the
prejudiced attitudes or the ignorance of others . . . . Few aspects
of a handicap give rise to the same level of public fear
and misapprehension as contagiousness. Even those who
suffer or have recovered from such noninfectious diseases as
epilepsy or cancer have faced discrimination based on the irrational
fear that they might be contagious. The Act is carefully
structured to replace such reflexive reactions to actual
or perceived handicaps with actions based on reasoned and
medically sound judgments . . . .(32)
The moral justification for the ruling was implicit rather than explicit, with a compassionate tone and a reliance on the self-evident odiousness of irrational fear, replacing moral exegesis.
The Court also justified its conclusion with reference to pragmatic concerns. Chief Justice Rehnquist, dissenting, argued that the decision represented an intrusion on the states' traditional authority to control communicable diseases.(33) Justice Brennan's majority opinion countered (with a strong nod to HIV) that "because the Act requires employers to respond rationally to those handicapped by a-contagious disease, the Act will assist local health officials by helping remove an important obstacle to preventing the spread of infectious diseases: the individual's reluctance to report his or her condition."(34)
The complementary notions of rationality and unjustified fear are at the center of Brennan's approach to managing stigma through law.(35) Much of the rhetorical and logical force of the opinion comes from his definition of the problem as the protection of the noncontagious from fear of contagion, which is axiomatically irrational, but which carries the implication that shunning the truly contagious is perfectly acceptable. The management problem for the law was to distinguish the two kinds of cases. The tool provided by the Court was the notion of "significant risk," which Brennan defined, with a pretense of precision, as a function of "(a) the nature of the risk (how the disease is transmitted), (b) the duration of the risk (how long is the carrier infectious), (c) the severity of the risk (what is the potential harm to third parties) and (d) the probabilities the disease will be transmitted and will cause varying degrees of harm."(36)
In several later statutes, most notably the ADA,(37) Congress apparently adopted the Supreme Court's approach and affirmed the imputed intention to cover contagious diseases, including HIV, within the limits of "significant risk."(38) In the course of the epidemic, this body of anti-discrimination law has been invoked again and again in response to discrimination in such areas as school admission, employment, medical care, housing, prison conditions, and insurance.(39)
While AIDS remains indisputably a disability for legal purposes,(40) the protection afforded to asymptomatic carriers of HIV has recently been called into question. Most courts have held asymptomatic HIV infection to be a covered disability, but a split in the circuits has developed and the Supreme Court has granted review on the issue.(41) A decision by the Court excluding people with asymptomatic HIV will not only signal a narrowing reading of the ADA across the range of disabilities, but will eviscerate the protection against discrimination that people with HIV have enjoyed for most of the epidemic.
The protection of privacy developed in two distinct strands. In the years after 1986, states began passing HIV testing and confidentiality laws in fulfillment of the social deal cut by public health officials on the use of HIV tests.(42) At the same time, both state and federal courts began extending constitutional protection to HIV medical information, and recognizing a privacy interest in choosing to take or decline an HIV test.(43)
The pragmatic notion of encouraging testing by protecting privacy and informed consent is expressed typically in the Pennsylvania confidentiality law.(44) passed in 1990.
The General Assembly finds that ... [c]ontrolling the incidence of this
disease is aided by providing testing and counseling activities for those
persons who are at risk of exposure to or who are carrying the human
immunodeficiency virus (HIV) .... Testing and counseling are promoted
by establishing confidentiality requirements which protect individuals
from inappropriate disclosure and subsequent misuse of confidential
Politics being what they are, the laws did not always toe the pure anti-stigma line. Funeral directors, insurance companies, and other powerful players tended to get some degree of dispensation from the full force of the rules.(46) Many exceptions were based explicitly or implicitly on the need to release information to protect others from a perceived significant risk of transmission or exposure.(47) All things considered, however, HIV records acquired the sort of substantial privacy protection that people wrongly think all medical records enjoy.(48)
Parallel to this was the development of constitutional privacy doctrine.(49) The United States and many state constitutions have provisions that explicitly, or by judicial interpretation, protect the privacy of information collected or held by the government.(50) Individuals whose HIV status was revealed by government officials used this existing body of law to win redress with considerable success.(51) An exemplary case arose when a man with HIV, arrested on a minor charge, warned the officers frisking him to be careful because he had "`weeping lesions'" and was HIV positive.(52) The officers informed colleagues, who eventually warned the man's neighbors, resulting, by a roundabout but not unsurprising route, in his children being the subject of televised controversy at their school.(53) The judge's opinion turned largely on the severity of HIV stigma:
Society's moral judgments about the high-risk activities associated with
the disease, including sexual relations and drug use, make the information
of the most personal kind. Also, the privacy interest in one's exposure to
the AIDS virus is even greater than one's privacy interest in ordinary
medical records because of the stigma that attaches with the disease.(54)
The legal doctrine requires a "balancing" of the interest in privacy and the interest in disclosure, the latter being in most cases the prevention of transmission or the evaluation of the risk of an exposure.(55) Judges and litigants in such cases have tended to evaluate demands for disclosure in terms similar to the significant risk analysis in anti-discrimination law. The mistreatment of the plaintiff and his family in Doe was unreasonable because none of the people who were warned were in real danger.(56)
The judge in Doe also brought to bear the practical justification that privacy is a necessary condition for appropriate disclosure:
Clearly, an arrestee's disclosure to police that he or she has AIDS is
preferable to nondisclosure .... Police have more than "casual contact"
with arrestee, increasing the likelihood that the disease can be
transmitted. For example, by frisking an arrested person, police may
come into contact with hypodermic needles. Thus, disclosure should be
encouraged to protect police officers. Common sense demands that
persons with AIDS be able to make such disclosures without fear that
police will inform neighbors, employers, or the media.(57)
C. Stigma as an Argument Against Legislation
The handling of epidemics customarily involves social negotiation among the sick, the well, and the authorities.(58) In a general way, then, it was not only plausible but eminently realistic for some to argue, and for health officials ultimately to conclude, that the response to the epidemic would have to be broadly acceptable to, and accommodate the preferences and needs of, the putative targets of control efforts. This is likely a truism of regulation in anything short of a police state. In addition to the passage of protective legislation, it led to the conclusion that "an appropriate legal response to HIV/AIDS will most often have as its desired outcome the absence rather than the presence of applicable law."(59)
The argument has been raised against virtually every control measure made or proposed concerning HIV that involves any potential coercion at all.(60) The roster includes not only more overt forms of control, such as quarantine and criminal prosecution of people with HIV, but also partner notification, premarital testing, and closure or regulation of sex clubs and bathhouses.(61) The concern continues to arise in HIV policy deliberations at all levels. Most recently, it has been an argument against screening of expectant mothers or newborns(62) and universal name reporting.(63)
II. A Review OF THE STUDIES To DATE
In the decade and a half of the HIV epidemic, the social risks associated with the disease, and the impact of these risks on attitudes and behavior, have been extensively studied. In this Part, I review this body of data and discuss its limitations.
A. Incidence of Discrimination
There is substantial evidence that discrimination and other forms of mistreatment occur, in some settings, at a substantial rate. This evidence takes the form of litigation censuses'(64) testing, in which a person portraying a potential target of discrimination offers an opportunity for discrimination to occur,(65) and surveys of the experiences of people with HIV.(66)
These data, though valuable, are limited. The volume of complaints and formal litigation bears an unknown relationship to acts of discrimination. Both testing and patient surveys suggest that discrimination by dentists, for example, is seriously underlitigated.(67) Testing is a good indicator of the propensity to discriminate, and helps better to define its causes and modes, but testing results are of uncertain generaliziability and have been confined to a few fields, particularly dental care. Likewise, surveys of actual experiences of the infected have been few, and the reliability of self-reports of discrimination is unknown. Future progress in reducing stigma, and its ill-effects on prevention, depends on our learning a great deal more about how, and how often, discrimination happens.(68)
HIV testing, in contrast, has been a heavily studied behavior. Most commonly, inquiry has focused on who tests or plans to, where, and at what rate.(69) Surveys of this kind have typically focused on demographic or risk-factor patterns in the use or intended use of anonymous versus confidential testing sites, without making any attempt to find out whether the subjects were aware of their testing options, or had concerns about the social risks of testing.(70) There is, however, a substantial number of studies investigating the influence of social risk perceptions and law on the decision to be tested, using a variety of techniques.(71)
B. Perceived Socio-Legal Barriers to Testing
At least eleven studies have asked subjects who had not been tested or who had declined to learn their HIV test results about perceived barriers to testing. Results are summarized in Table 1.(72)
TABLE 1 PERCEIVED BARRIERS TO TESTING
Study/ Survey Agree population date Item (%) Lyter (1987) 1985- "concerns about Gay/bisexual men 1987 confidentiality." 19 Magura (1989) 1987 "I think the results Methadone patients might fall into the 37 wrong hands." "I was worried that the result might get back to 14 my [clinic] counselor." Zapka (1991) 1985- "I am concerned about Gay/bisexual men 1989 whether information 19 would be kept confidential." Myers (1993) 1990 I do not want my name on Gay/bisexual men a government list." 75 Jones (1993) 1989 "Concerned about STD clinic patients confidentiality." 19 Faden (1994) 1989- "You would have trouble Women attending 1990a getting or keeping job." N/A inner-city prenatal clinic "You would be turned out of your home." "You would lose privacy because other people, besides the doctors and nurses at the clinic, would find out the test results." Stall (1996) 1992 "I am afraid the test Gay/bisexual men results would be used 74 against me." Healton (1996) 1992 "Don't want others to Women attending know my status." 2 prenatal clinic "Worry about discrimination." 2 Simon (1996) 1993- Concern for Heterosexual STD 1994 confidentiality was HIV+ 5.6 clinic patients "primary reason." HIV- 2.2 Schwarcz (1997) 1993- "I'm worried about STD clinic patients 1994 confidentiality." 13.3 Godin (1997) N/A "I do not want my name Gay/bisexual men on a government list." N/A "It could affect my career or insurance."
The studies suggest that a significant proportion of people reluctant to be tested have privacy or discrimination concerns, but virtually all were so designed so that the confidentiality concern could have been stimulated by the …
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Publication information: Article title: Law and the Social Risk of Health Care: Lessons from HIV Testing. Contributors: Burris, Scott - Author. Journal title: Albany Law Review. Volume: 61. Issue: 3 Publication date: Spring 1998. Page number: 831+. © 1999 Albany Law School. COPYRIGHT 1998 Gale Group.
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