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Ethics and Newborn Genetic Screening

, 376 pages

2 line drawings

May 2009



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Ethics and Newborn Genetic Screening

New Technologies, New Challenges

Highly Commended, Basis of Medicine, 2010 British Medical Association Book Awards

The United States has the first and the farthest-reaching newborn genetic screening program in the world. In recent years, individual states have expanded their newborn screening programs to include many more genetic conditions, as new medical knowledge and new testing technologies have become available. The contributors to this provocative collection study the complex ethical and policy challenges present in the changing newborn screening environment and offer guidance to professionals, policymakers, 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.

Contributors: Andrea Bonnicksen, Ph.D., Northern Illinois University; Jeffrey R. Botkin, M.D., M.P.H., University of Utah; Ned Calonge, M.D., M.P.H., Department of Public Health and Environment, Denver; Toby Citrin, J.D., University of Michigan School of Public Health; Ellen Wright Clayton, M.D., M.S., J.D., Vanderbilt University; Jannine De Mars Cody, Ph.D., University of Texas Health Science Center; Anne Marie Comeau, Ph.D., University of Massachusetts Medical School; James R. Eckman, M.D., Emory University School of Medicine; Scott D. Grosse, Ph.D., National Center on Birth Defects and Developmental Disabilities; Bruce Jennings, M.A., Yale School of Public Health; Donna E. Levin, J.D., Massachusetts Department of Public Health; Michele A. Lloyd-Puryear, M.D., Ph.D., U.S. Department of Health and Human Services; Marie Y. Mann, M.D., M.P.H., U.S. Department of Health and Human Services; Karen J. Maschke, Ph.D., The Hastings Center; Stephen M. Modell, M.D., M.S., University of Michigan School of Public Health; Virginia A. Moyer, M.D., M.P.H., Baylor College of Medicine and Texas Children's Hospital; Lainie Friedman Ross, M.D., Ph.D., University of Chicago; Joseph Telfair, Dr.P.H., M.S.W., M.P.H., University of North Carolina at Greensboro; Steven M. Teutsch, M.D., M.P.H., Merck & Co., Inc.; Bradford L. Therrell, Ph.D., University of Texas Health Science Center; Benjamin S. Wilfond, M.D., University of Washington

Mary Ann Baily is Research Scholar in Ethics and Health Policy at The Hastings Center. Thomas H. Murray is president of The Hastings Center and coeditor of The Cultures of Caregiving: Conflict and Common Ground among Families, Health Professionals, and Policy Makers and Genetic Ties and the Family: The Impact of Paternity Testing on Parents and Children, both published by Johns Hopkins.

" Ethics and Newborn Genetic Screening... brings together some of the best minds and clearest thinking on the issues at stake."

"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."

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