the physicians who care for critically ill newborns, to be a somewhat unexpected source of discrimination against HIV-positive newborns. Surveys conducted in 1991 and 1996 probed neonatologists' attitudes about lifesaving procedures for HIV-infected infants through a series of hypothetical vignettes about how they would treat these infants' non-HIV-related conditions, such as surgery for intestinal blockage and correction of a heart defect. Results from the 1991 survey found neonatologists' recommendations for lifesaving procedures to vary with HIV status: neonatologists were less likely to recommend lifesaving procedures for infants who were HIV-infected or whose mothers were HIV-infected (with infants' status unknown) than for infants with no known HIV risk (Levin et al., 1995). Neonatologists in the survey also placed very low value on the quality of life for at-risk or HIV-infected infants, a valuation that was consistent with their willingness to withhold treatment recommendations. The results from the 1996 survey were virtually identical, despite widespread knowledge of progress with ZDV for HIV prevention and treatment. Results did not vary by location or region. Neonatologists held the same attitudes about withholding treatment for HIV-infected or at-risk infants in 1996 as they did in 1991. In the discussion, a number of participants expressed shock of the results and the implications of withholding treatment from HIV-exposed infants who later proved to be HIV-negative. One participant speculated that neonatologists' attitudes might have been colored by their own fear of performing invasive procedures on infants with HIV. The participant recommended revising the survey to include vignettes with non-invasive procedures to test whether fear shaped neonatologists' attitudes.

Theresa McGovern of the HIV Law Project, an organization that provides advocacy and legal services for low-income women in New York City, stated that her organization favors voluntary testing during pregnancy. It joined other organizations in a lawsuit to block implementation of mandatory newborn testing. Their opposition was predicated upon the law's ineffectiveness, flawed implementation, and its premise that women would not be receptive to testing during pregnancy. Ms. McGovern referred to studies showing that women overwhelmingly accept testing. In her experience, women were not being offered the test. She stated, "Frankly, I was angry at the notion of [how] after years of provider failure to recognize and treat this disease in women and children, legislation would be passed as if the women were negligent." She echoed concerns about the receipt of test results being too late to prevent transmission through breast-feeding. She was distressed about the quality of pre-test counseling at the time of delivery, and about women not receiving appropriate care and treatment once they had been identified through the program as HIV-positive.

One of the women whom Ms. McGovern represents, a 25-year-old woman who is also the mother of a six-month-old daughter, relayed her own experiences with the mandatory newborn testing program in New York. Having received no prenatal counseling about HIV, she learned that she and her daughter were HIV-positive two weeks after her daughter's birth and after she had begun breast-feeding.



The National Academies | 500 Fifth St. N.W. | Washington, D.C. 20001
Copyright © National Academy of Sciences. All rights reserved.
Terms of Use and Privacy Statement