Screening and Treatment of Newborns

Abstract

With the advent of new genetic technologies and the Human Genome Initiative, interest in the problems posed by genetic diagnostics in general, and by genetic screening in particular, has surfaced. Many recent works focus on the problems posed by the "new genetics" in the contexts of prenatal diagnosis, carrier detection, employment, and insurance. In the midst of all this discussion, the routine testing of newborns for genetic disorders seems relatively uncomplicated and has, in fact, become "a part of common practice and accepted public policy with little thought having been given to the implications." The relative lack of concern about newborn screening is understandable. The fact that a routine test can detect diseases that could have serious consequences if untreated but which could be alleviated by early intervention makes the use of routine testing on newborns seem inevitable. A growing number of commentators applaud this practical exclusion of parents from the decision-making process and assert that newborn screening is so desirable that states should require it as a matter of law. This Article argues that society should resist efforts to require that newborns be tested for an ever-increasing number of conditions. Part II of this Article examines why interdisciplinary research is essential in developing appropriate laws governing newborn screening. Part III presents an overview of the screening process by describing not only what screening can and cannot do, but also the general organization of current programs. Part IV draws upon several different areas of discourse that suggest reason for concern. First, a large body of empirical research is presented that demonstrates that newborn screening causes psychological and other harm to infants and their families. These consequences have not previously been considered by legal commentators. Second, this section suggests that the diagnosis of disease in the neonatal period, regardless of accuracy, can have adverse social and legal consequences for families and children. Part IV finally considers the rather remarkable role of the state in this process and contends that state intervention, under the guise of public health, in domains traditionally reserved for the family is not justifiable under constitutional principles. This section recognizes that economic and political forces motivating the state's decision to undertake newborn screening raise questions about the desirability of the state as a major participant in these programs. Looking more to the future, Part V argues that focusing on biological, and particularly genetic, causes of disease can fundamentally alter the ways in which society thinks about the nature of disease and the allocation of responsibility for health among individuals and society. Part VI concludes that society should screen neonates only when children can derive substantial benefit from early detection and that legislatures should amend existing laws to ensure that parents can participate in the screening process.