Legal and Ethical Issues in Newborn Screening

Abstract

The development of techniques for newborn screening and for prenatal diagnosis of sickle hemoglobin and other hemoglobinopathies will have a profound effect on public health policy to a greater extent than did mass population testing that was initiated in the early 1970s. The subject of this conference is newborn screening; however, there is an old aphorism: "One cannot do one thing." Accordingly, when newborn screening for hemoglobinopathies is instituted on a large scale, the public policy consequences will extend far beyond newborn screening. We cannot anticipate all of the effects of such a policy, but some aftermaths may be predicted with near certainty. To understand the possible outcomes of a large-scale newborn screening program for sickle cell disease, some prior court and legislative decisions are pertinent. Legislation, court decisions, state and federal genetics programs, and scholars in the social sciences, humanities, law, medicine, and genetics support discoveries in genetics that now facilitate genetic testing, prenatal diagnosis and selective abortion of fetuses with genetic and other disorders, artificial insemination, and in vitro fertilization. Arguments for and against these procedures are reminiscent of debates about the use of the limited tools of the old eugenics to prevent the birth of children who were considered to be physically, mentally, or socially defective. Some examples of these court and legislative decisions follow: the Supreme Court verdict in Munn v Illinois established that the public interest supercedes the private interests of individuals; Buck v Bell, another Supreme Court ruling, upheld the constitutionality of mandatory sterilization.