science and the prevention of HIV risk behaviors, and concluded that their thoughts about HIV testing had not kept pace. The group's consensus is that knowledge of HIV status is desirable because it allows individuals to make informed treatment and prevention decisions. From this starting point, the group agreed on three themes that should guide current HIV testing activities:
Although not stated in these terms, the consensus report essentially calls for an end to AIDS exceptionalism, balanced with efforts to reduce the need for a special approach in the first place (Kaiser Family Foundation, 1998b). Making testing more routine, in itself, can also help to reduce the stigma associated with testing per se.
Newborn HIV screening was introduced in the late 1980s for the purpose of surveillance, not case finding, when public health officials in some states and at the Centers for Disease Control and Prevention (CDC) realized that blood samples routinely taken from all newborns for PKU testing also could be tested for HIV. Because these tests detected maternal antibodies, they revealed the mothers' and not the babies' HIV status. Since no known treatment for HIV-positive children or means to prevent transmission existed at that time, anonymous or "blind" testing was considered acceptable, and, since it was blind, women would not refuse to be tested based on known or perceived HIV risks, so prevalence data would be unbiased. This survey, known as the Survey of Childbearing Women (Davis et al., 1995), was thus extremely valuable for surveillance purposes, and indeed was the only truly reliable national surveillance data on HIV prevalence in any defined population (NRC, 1989).
In the mid-1990s New York State legislators and others argued, in the interest of the HIV-positive children whose status was not known to their parents or guardians, that the results should be "unblinded," as described in Appendix L, and CDC soon discontinued the Survey of Childbearing Women nationally. New York statutes now require notification of parents and health care providers of all infants with positive HIV tests, so what was a surveillance activity became a case finding program. As described in Chapter 1, the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act Amendments of 1996 could, under certain conditions, obligate other states to institute similar programs. Such mandatory newborn screening approaches have been criticized as providing only limited benefits to the children found to be positive (compared to prenatal diagnosis