Mortal Secrets: Truth and Lies in the Age of AIDS

Conclusion: Secrets in Public Life

The men and women in our study typically learned they were infected with HIV in settings where confidentiality, and sometimes anonymity , were promised. Nonetheless, from that moment on, they were forced to struggle with questions of how and with whom they should share their secret . The accounts in this book reveal the pain that many encountered in confronting these issues—the shame and rejection, even violence, they anticipated and experienced. These accounts also depict support and love. In all cases, disclosure was a monumental and defining issue, challenging and laying bare processes of decision making about morality, truth, secrets, and trust in everyday life. These disclosure decisions—although HIV-infected individuals made every effort to keep them private—could not be matters of indifference to others concerned about the course of the AIDS epidemic. Inevitably, whether infected individuals tell their sexual partners has important implications for viral spread. Therefore, public health officials have continued to give attention to ways of encouraging and facilitating disclosure. They have faced, too, the issue of how to respond to those who fail to disclose and who engage in sexual or needle-sharing behaviors that can transmit HIV. These concerns have also captured the attention of the broader public, seized by the drama and tragedy of AIDS. The private decisions described here have become matters of public debate. On many occasions the controversy reflected an appreciation of the complexity of the issues at stake, but too often was animated by moral fury. Controversy has centered on two broad questions that touch on the history of public health responses to infectious disease: contact investigations and coercive control of those who threaten the public well-being . Secrets in P ublic Life c o n c l u s i o n Partner Notification Current policy debates can best be understood in historical and political contexts. From the early 1980s, public health officials confronting the AIDS epidemic had come to recognize the crucial importance of confidentiality. Those at risk for HIV infection could be encouraged to undergo counseling and testing only if convinced that their test results would not be disclosed without their consent. Thus, the Centers for Disease Control and Prevention , the surgeon general, the Institute of Medicine, the National Academy of Sciences, and the Presidential Commission on the HIV Epidemic all stressed that the protection of confidentiality did not compromise the protection of public health.1 On the contrary, confidentiality was a precondition for achieving public health goals. The consensus masked underlying tensions. Public health officials, AIDS activists, gay rights organizers, and civil liberties groups supported the protection of confidentiality. However, for some, the protection of privacy was critically important but not an absolute. Others saw the demands of confidentiality as inviolate. Thus, conflict was inevitable over the development of public programs for reaching out to those who were unknowingly in danger. The controversy focused on whether, in the context of AIDS, either of two public health approaches to informing those at risk was appropriate.2 The first, as described in Chapter 6, involves the “duty to warn.” This approach arose out of clinical settings in which physicians knew the identities of endangered persons and was a radical departure from the professional norm of confidentiality. Typically it required that imperiled individuals be warned even against the wishes of the patient and whatever the consequences for privacy. The second approach—partner notification or contact tracing—emerged from STD-control programs in which the clinician typically did not know beforehand the identity of those who might have been exposed. This approach required patients to cooperate voluntarily in providing the names of their contacts. The index patient’s identity was never disclosed to the notified party, and absolute confidentiality was guaranteed in the notification process. Yet despite four decades of experience with contact tracing for other STDs, in the first years of the HIV epidemic, efforts to undertake such public health interventions met with fierce resistance. Activists and civil libertarians worried that contact tracing would compromise the privacy of both index patients and their former partners.3 Furthermore, opponents argued that HIV, because of its uniquely stigmatized status, was not like other STDs. 186 | m o r t a l s e c r e t s c o n c l u s i o n | 187 This opposition shaped the initial response of public health officials, especially in states or cities with relatively large numbers...