Diane B. Paul is Professor, Department of Political Science, University of Massachusetts at Boston.
The Concise Encyclopedia of Ethics of New Technologies includes 23 articles previously published in the highly-acclaimed Encyclopedia of Applied Ethics, nine updated articles, and five new articles, commissioned especially for this volume. Over half of the previously published articles include updated facts and bibliographic citations. Authors of genetics articles have updated their works to include the most recent developments and publications. New articles include: "Cloning," "Geneticization," "Health Technology Assessment," "Intrinsic and Instrumental Value," and "Novel Foods."Articles fall into these subject categories: Medical Ethics; Scientific Ethics; Theories of Ethics; Environmental Ethics; Legal Ethics; Ethical Concepts
PKU (phenylketonuria) is a genetic disorder that causes severe cognitive impairment if it is not detected and treated with a strict and difficult diet. Programs to detect PKU and start treatment early are deservedly considered a public health success story. Some have traded on this success to urge expanded newborn screening, defend basic research in genetics, and confront proponents of genetic determinism. In this context, treatment for PKU is typically represented as a simple matter of adhering to a low-phenylalanine diet. In reality, the challenges of living with PKU are daunting.
In this first general history of PKU, a historian and a pediatrician explore how a rare genetic disease became the object of an unprecedented system for routine testing. The PKU Paradox is informed by interviews with scientists, clinicians, policymakers, and individuals who live with the disease. The questions it raises touch on ongoing controversies about newborn screening and what happens to blood samples collected at birth. -- M. Susan Lindee, University of Pennsylvania