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. …