This report is intended primarily to address the particular questions posed in the Institute of Medicine's (IOM's) congressional mandate: "the extent to which State efforts have been effective in reducing the perinatal transmission of the human immunodeficiency virus, and an analysis of the existing barriers to the further reduction in such transmission." The committee also intends this report to be useful to national, state, and local policy makers, as well as health care providers and public health practitioners who want to give the most effective and appropriate care to all women and children, and to do everything possible to prevent perinatal transmission of HIV. In the interest of a full and complete analysis, the report therefore takes up other issues raised by the Ryan White CARE Act Amendments of 1996.

To this end, the report aims to provide a complete analysis of (1) the impact of current approaches to reducing perinatal transmission, as well as the barriers to further reducing such transmission; (2) ways to increase prenatal testing, improve therapy for women and HIV-infected children, and generally reduce perinatal HIV infections; and (3) the ethical and public health issues associated with screening policies as prevention tools, and their implications for prevention and treatment opportunities for women and infants.

Despite the focus of the Ryan White CARE Act Amendments on newborn screening, the congressional mandate for this IOM study does not call for an evaluation of that option. As a result, the committee has not made any recommendations about mandatory newborn testing per se, but notes the limited role it can play in preventing transmission of HIV from mother to child, the focus of this report.

In its analysis, the committee has found it helpful to consider a chain of factors affecting perinatal transmission, as illustrated in Figure 1.1. Although precise data are not available for all of these proportions, the committee found this to be a helpful organizing framework, and it is used throughout this report. The chain is intended for heuristic purposes and is not a complete representation of all of the possible paths to HIV infection or interventions. Pregnancy termination is possible, for instance, at many stages in the chain. Women who are not tested as part of prenatal care may be tested during labor and receive some benefit from treatment, and children whose HIV status is detected after birth can be kept from breast-feeding.

Following this introduction, Chapter 2 provides historical and other background information on population-based screening and surveillance, HIV testing generally, prenatal and newborn screening for other conditions, and special considerations needed when the condition in question is concentrated in minority