The AIDS Pandemic: Complacency, Injustice, and Unfulfilled Expectations (review)

In this volume, Lawrence Gostin—always a knowledgeable, lucid, and judicious guide to the legal and ethical implications of the AIDS epidemic—has gathered together his essays written over a span of two decades, and indeed has substantially rewritten and updated them, so rapidly has the field changed during this period. Following the late Jonathan Mann, Gostin argues that public health and human rights are inseparable ideas, and that people cannot effectively avoid disease risk if they are denied civil, political, and economic rights. This perspective proves a powerful tool for analyzing the full range of legal and ethical issues of the epidemic: privacy, discrimination, testing and screening, partner notification, immigration policies, and many others. Gostin shows us how to do a "human rights assessment" to evaluate how a proposed AIDS policy will impact on human rights and, by extension, to decide whether the proposed policy is a good one. In addition to analyzing many critical issues, he provides clear policy recommendations, supported by clear, reasoned, and reasonable arguments. His is a voice of wisdom and compassion, backed by a wealth of knowledge gathered from decades of research and engagement.

Gostin divides the history of the AIDS epidemic in the United States into three phases. The first, from 1981 to 1987, he calls the era of "denial, blame, and punishment" when the domestic epidemic exploded, the government remained silent, and people living with AIDS faced stigma, discrimination, and rejection (p. xxiv). The second phase, from 1987 to 1997, was one of "engagement and mobilization" when advocacy groups exerted a strong influence on policy, federal health agencies were "enterprising and innovative," and antiretroviral drugs prolonged the health and lives of people living with the infection (p. xxvi). The third phase, from 1997 to the present, he characterizes as an era of "complacency, injustice, and unfulfilled expectations" (p. xxvii). The "miracle drugs" induced a certain complacency in the United States, while the HIV pandemic exploded in the developing world and among minority populations at home, creating two separate worlds: one with relatively low burdens of disease and sophisticated treatments, and the other with staggering disease burdens and paltry health-care resources.

Gostin and his colleagues conducted a systematic national review of court and human rights commission decisions relating to the AIDS epidemic, noting that AIDS has created the largest body of cases attributed to a single disease in the history of jurisprudence. A few examples of Gostin's arguments must serve to represent this very rich review of the legal, ethical, and policy issues. On the contested issue of perinatal testing and screening, he notes that African Americans and Latinas represent 80 percent of all AIDS cases among women. Although from a scientific and public health perspective it may be more cost-effective to provide screening only for higher-prevalence populations, it is important from a social justice point of view to offer screening to all women. Gostin thus recommends universal informed prenatal screening with strong privacy and nondiscrimination safeguards, and guarantees of ongoing health care and psychosocial support, including state-of-the-art antiretroviral therapy, viral-load monitoring, and elective cesarean section.

In a chapter on reporting, Gostin states that reporting requirements pose an enduring conflict of values between individual rights to privacy and the collective good of society. He finds that collective justifications for a national system of HIV case reporting are compelling. The current AIDS reporting system provides only a snapshot of a distant epidemic and cannot effectively track the progression of the epidemic among young adults, women, and communities of color. Even more serious is the need for outreach; one CDC study found that 93 percent of all young black men who have sex with men (MSM) and who tested positive for HIV were unaware of their positive status, and therefore had not sought treatment and care.

In a chapter on drugs and HIV transmission, Gostin notes that the sharing...