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Reducing the Odds: Preventing Perinatal Transmission of HIV in the United States (1999)
Institute of Medicine (IOM)

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. "2 Public Health Screening Programs." Reducing the Odds: Preventing Perinatal Transmission of HIV in the United States. Washington, DC: The National Academies Press, 1999.

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like the patient choice model, are voluntary, in that women have the right to choose not to be tested, women are much more likely to be tested under either of the "routine" models. In routine programs, the default is that all women will be tested, implying that the health care team believes that the test is an important part of good medical care. In the routine without notification program, women are not likely to know that they are being tested. In a routine with notification program, the woman must be explicitly informed of the test, and that she has the opportunity to opt out.

This list of categories is not mutually exclusive, nor a strict rank ordering, and some policies can reflect a combination of these approaches. As documented in Chapter 6, the current law in California and New Jersey, for instance, requires prenatal care providers to offer an HIV test to all women, but leaves it to the women to decide whether they want to be tested. In Texas, providers are required to test all women in prenatal care and their newborns unless a woman objects in writing, and to notify them about the testing and their right to refuse.

Experience With Selected Public Health Screening Programs2

Pregnant women are routinely tested for many conditions. The American Academy of Pediatrics and the American College of Obstetricians and Gynecologists, for instance, recommend that the following tests be performed early in pregnancy: hematocrit or hemoglobin, urinalysis, urine testing to detect asymptomatic bacteriuria, determination of blood groups and CDS (Rh) type, antibody screen, determination of immunity to rubella virus, syphilis screen, cervical cytology (as needed), antibodies to hepatitis B virus surface antigen, and HIV (with the women's consent) (AAP and ACOG, 1997). Newborns are routinely tested for phenylketonuria (PKU), a condition that can lead to mental retardation without dietary interventions, and other inborn errors of metabolism (Acuff and Faden, 1991). These tests are well accepted, and seen to clearly benefit the women and her child. Some prenatal and postnatal testing programs, however, have been more controversial.

The first prenatal screening program mandated by law was for syphilis in the 1930s and 1940s. In early 1960s, many states mandated newborn screening for PKU. Screening for other inborn errors of metabolism (congenital hypothyroidism, galactosemia, homocystinuria, histidenemia, maple syrup urine disease, and tyrosinemia) followed in the 1970s. In the early 1970s, many states initiated mandatory screening for sickle cell disease, a disease that had limited treatment options, in a variety of populations. Later in the same decade, maternal serum

2  

This section is drawn largely on the work of Acuff and Faden (1991).

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Front Matter (R1-R16)
Executive Summary (1-14)
1 Introduction (15-20)
2 Public Health Screening Programs (21-35)
3 Descriptive Epidemiology of the Perinatal Transmission of HIV (36-44)
4 Natural History, Detection, and Treatment of HIV Infection in Pregnant Women and Newborns (45-53)
5 Context of Services for Women and Children Affected by HIV/AIDS (54-67)
6 Implementation and Impact of the Public Health Service Counseling and Testing Guidelines (68-108)
7 Recommendations (109-133)
References (134-144)
Appendixes (145-146)
A Committee and Staff Biographies (147-154)
B Context of Services for Women and Children Affected by HIV/AIDS (155-189)
C Workshop I Summary (190-202)
D Workshop II Summary (203-235)
E New York/New Jersey Site Visit Summary (236-251)
F Alabama Site Visit Summary (252-259)
G South Texas Site Visit Summary (260-270)
H Florida Conference Summary (271-274)
I HIV Testing and Perinatal Transmission: Thoughts from an HIV-Positive Mother (275-285)
J Human Immunodeficiency Virus Antibody Testing Among Women 15-44: Results from the 1995 National Survey of Family Growth (286-303)
K Details of the Committee's Models and Assumptions (304-312)
L Passing the Test: New York's Newborn HIV Testing Policy, 1987-1997 (313-340)
M Excerpts from the Ryan White CARE Act Amendments of 1996 (341-346)
N 1995 U.S. Public Health Service Recommendations for Human Immunodeficiency Virus Counseling and Testing for Pregnant Women (347-371)
O Acronyms and Glossary (372-376)
Index (377-397)