Genetic Screening of Newborns

This book looks at genetic screening of newborns and the ethical principles that guide this practice. The majority of babies born in the U.S. each year undergo screening soon after birth to identify genetic defects that could cause serious illness if left undetected and untreated. The goal is to detect diseases as early as possible so that timely, effective treatment can be initiated even before the onset of symptoms. In most states, newborn screening is now mandated by law. Of the approximately four million babies screened each year, about 5,000 are identified as having serious heritable disorders, most of which are, in varying degrees, amenable to treatment. For more than 40 years, the moral focus of newborn screening has been what is good for the infant. However, as more and more disorders have been added to state newborn screening programs, the traditional ethical principles of screening have been called into question. This aim of this study is to foster public awareness of the practice of newborn screening, the ethical principles that have guided it until now, and the ethical problems posed by its current and future expansion. This book consists of public documents which have been located, gathered, combined, reformatted, and enhanced with a subject index, selectively edited and bound to provide easy access.