The changing of moral focus of newborn screening

An Ethical Analysis by The President's Council on Bioethics, USA

The changing of moral focus of newborn screening An Ethical Analysis by The President's Council on Bioethics, USA Nearly four million newborns undergo genetic screening every year in the United States. Yet, the process of genetic screening and its ethical implications are not well understood by their parents. Public discussion and education about recent changes in public policy and screening techniques is insufficient for parents to make informed choices. One aim of this white paper is to provide the background information every parent needs in order to understand the issues and to make informed choices.

Most states have mandatory genetic screening programs for newborn babies. Until recently such screening was limited to diseases that were well understood and for which effective treatments were available. Now, however, most mandatory screening programs also test for diseases that are not well understood and for which there is no available treatment. Some believe this change is ethically justifiable because much knowledge of little understood diseases could be gained and lead eventually to treatment and cure.