When courts intervene: public health, legal and ethical issues surrounding HIV, pregnant women, and newborn infants

Ninety-three percent of pediatric AIDS cases are the result of perinatal HIV transmission, a disease that is almost entirely preventable with early intervention, which reduces the risk of perinatal HIV infection from 25% to <2%. The American College of Obstetricians and Gynecologists and the American Academy of Pediatrics both recommend routine HIV testing of all pregnant women and at-risk newborn infants. When pregnant women decline HIV testing and/or treatment, public health, legal, and ethical dilemmas can result. Federal courts consistently uphold a woman's right to refuse medical testing and treatment, even though it may benefit her fetus/newborn infant. Federal courts also reliably respect the rights of parents to make health care decisions for their newborn infants, which may include declining medical testing and treatment. Confusing the issue of HIV testing and treatment, however, is the fact that there is no definitive United States Supreme Court ruling on the issue. State laws and standards vary widely and serve as guiding principles for practicing clinicians, who must be vigilant of ongoing legal challenges and changes in the states in which they practice. We present a case of an HIV-positive pregnant woman who declined treatment and then testing or treatment of her newborn infant. Ultimately, the legal system intervened. Given the rarity of such cases, we use this as a primer for the practicing clinician to highlight the public health, legal, and ethical issues surrounding prenatal and newborn infant HIV testing and treatment in the United States, including summarizing key state-to-state regulatory differences.