Ethics and newborn genetic screening : new technologies, new challenges

摘要: The United States has the first and farthest-reaching newborn genetic screening program in world. In recent years, individual states have expanded their programs to include many more conditions, as new medical knowledge testing technologies become available. contributors this provocative collection study complex ethical policy challenges present changing environment offer guidance professionals, policymakers, general public. Experts from fields of bioethics, genetics, pediatrics, public health, health policy, law, political science identify analyze four social issues critical policy: distribution costs benefits; information, consent, privacy; consultation decision making; race, ethnicity, socioeconomic status. process, capture difficulties trying forge at intersection parental concerns, technologies, economic interests. Contributors: Andrea Bonnicksen, Ph.D., Northern Illinois University; Jeffrey R. Botkin, M.D., M.P.H., University Utah; Ned Calonge, Department Public Health Environment, Denver; Toby Citrin, J.D., Michigan School Health; Ellen Wright Clayton, M.S., Vanderbilt Jannine De Mars Cody, Texas Science Center; Anne Marie Comeau, Massachusetts Medical School; James Eckman, Emory Medicine; Scott D. Grosse, National Center on Birth Defects Developmental Disabilities; Bruce Jennings, M.A., Yale Donna E. Levin, Michele A. Lloyd-Puryear, U.S. Human Services; Y. Mann, Karen J. Maschke, Hastings Stephen M. Modell, Virginia Moyer, Baylor College Medicine Children's Hospital; Lainie Friedman Ross, Chicago; Joseph Telfair, Dr.P.H., M.S.W., North Carolina Greensboro; Steven Teutsch, Merck & Co., Inc.; Bradford L. Therrell, Benjamin S. Wilfond, Washington