Ethics and Newborn Genetic Screening:

The United States has the first and the farthest reaching newborn genetic screening program in the world. Originally intended to rule out genetic disorders in infants, the program is now under pressure to make use of advanced technologies and new medical knowledge to screen for adult-onset conditions, identify trait carriers, and evaluate genetic predispositions to disease.The contributors to this provocative collection study the impact of these changes on the program and offer guidance to professionals, policy makers, and the general public. Experts from the fields of bioethics, genetics, pediatrics, public health, health policy, law, and political science identify and analyze four social and ethical issues critical to newborn screening policy: the distribution of costs and benefits; information, consent, and privacy; consultation and decision making; and race, ethnicity, and socioeconomic status. In the process, the contributors capture the difficulties of trying to forge ethical public policy at the intersection of parental concerns, new technologies, and economic interests.''This book is an important contribution to policy discussions about newborn screening programs—critical given the trend toward rapid expansion. The editors make a strong case for their framework for analysis, and they clearly articulate the implications of its adoption. Other chapter authors, some with very different perspectives, enrich the conversation. A model for work at the intersection of ethics and health policy.''—Mary Anderlik Majumder, Baylor College of Medicine