Law and the social risk of health care: lessons from HIV testing.

• Author: Burris, Scott
• Position: Symposium on Health Care Policy: What Lessons Have We Learned from the AIDS Pandemic?

INTRODUCTION

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)

1. "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...