alpha-fetoprotein tests were introduced, on a voluntary basis, to help detect neural tube defects. Today, specific tests mandated or recommended as standards of practice vary substantially across state lines. Mandatory prenatal and newborn testing for substance abuse is increasingly common.
In order to understand the context and appreciate the issues and challenges involved in making policy recommendations for HIV screening of pregnant women, the committee has focused on the historical experience with five selected conditions: (1) syphilis, (2) phenylketonuria, (3) sickle cell disease, (4) neural tube defects, and (5) substance abuse. These examples were chosen because they illustrate issues relevant to the perinatal transmission of HIV: they involve maternal and child health issues, infectious diseases, a variety of risks and benefits, and minority populations.
Early in the twentieth century, syphilis was more common than all other sexually transmitted diseases (STDs), and congenital syphilis was the leading cause of spontaneous abortions and stillbirth. Approximately one million women of childbearing age had syphilis. As a result 25,000 fetuses per year died before birth and 60,000 were born with syphilis (U.S. PHS, 1940). Prenatal syphilis testing was available as early as 1906, but was not mandated by law due to "onerous treatment options and the stigma of being shown to have the disease" (Acuff and Faden, 1991). Indeed, even being tested for syphilis was stigmatizing, and many physicians were reluctant to embarrass women in their care by suggesting it.
In 1936, Thomas Parran, the U.S. Surgeon General, established a program for controlling syphilis that included mandatory premarital and prenatal blood tests. Two years later, a New York Post editorial entitled "13,000 Babies" described stillborn and affected babies in New York (New York Post, 1938). Post staff reported that "although public prenatal clinics were requiring blood tests for syphilis, only half of New York City's practicing obstetricians were routinely testing their private patients." By the end of 1945, as a result of this campaign, 36 states had passed prenatal syphilis screening laws. Under these laws, birth certificates had to record whether the test had been done prenatally and to explain why those who were not tested were not—women and physicians could refuse on religious or other grounds. Although these laws were passed before the introduction of antibiotic treatment, they resulted in a rapid decline in congenital transmission through case finding (Acuff and Faden, 1991), contract tracing, and the difficult and less effective therapies available at the time. Perhaps the most important aspect of these screening programs was that by making testing routine, they overcame the resistance of physicians to risk offending patients by suggesting a test for syphilis.