To Tell or Not to Tell: The Ethics of Disclosure in Pediatric AIDS via Vertical Transmission

Abstract

Globally, 4.3 million children under the age of 15 have succumbed to AIDS. In the year 2000 alone, an additional 600,000 diagnoses were made within this age group, bringing the total number of children (<15 years) currently living with AIDS to 1.4 million (World Health Organization, 2000). Of the children diagnosed, nearly all were infected via perinatal transmission (Centers for Disease Control and Prevention, 2000). Although the numbers are staggering, there is a slight glimmer of good news. The prevalence of pediatric AIDS cases has steadily declined in the United States since 1992, largely due to improved medication regimens, closer clinical management, and a decrease in the number of HIV-infected women who give birth (Centers for Disease Control and Prevention, 2000). When perinatal transmission does occur, children are also now living longer (Engle, 1999). Pharmacologic agents such as zidovudine, didanosine, lamivudine, nelfinavir, ritonavir, and nevirapine have increased the life expectancy of infected children, and those who were unlikely to have survived to preschool a decade ago are now reaching middle school age and beyond (Menting, 2000). According to the American Academy of Pediatrics (1999), between 36% and 61% of perinatally infected neonates survive to age 13. With these promising statistics come unprecedented concerns. Adolescence is a period in which there is “gradual assumption of adult responsibility” (Engle, 1999, p. 3), but some of this responsibility may admittedly be assumed earlier than is desirable. In 1997, adolescents between the ages of 15 and 17 were surveyed regarding sexual behavior, and responses revealed that greater than 46% had engaged in sexual intercourse (Santelli, Duberstein-Lindberg, Abma, SucoffMcNeely, & Resnick, 2000). Racial and ethnic differences in this study were notable. Of the African American adolescents surveyed, sexual intercourse had occurred for approximately 67.2% and 78.9% of the females and males, respectively (Santelli et al., 2000). When long-term survivorship crosses the path of adolescent development, the issue of disclosure becomes paramount. The following case study pertains to a pediatric patient who contracted AIDS via vertical transmission. It demonstrates not only the dire implications of parental secrecy but also the resultant ethical issues that contemporary nurses must address.