Ethics and Newborn Genetic Screening: New Technologies, New Challenges

by Baily, Mary Ann

• ISBN13: 9780801891519
• ISBN10: 0801891515
• Edition: 1st
• Format: Hardcover
• Copyright: 2009-05-01
• Publisher: JOHNS HOPKINS UNIV PRESS

Summary

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.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.

Author Biography

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.

Table of Contents

List of Contributors	p. vii
Preface	p. ix
Overview	p. 1
Fair Distribution of Newborn Screening Costs and Benefits	p. 19
Cost-Effectiveness as a Criterion for Newborn Screening Policy Decisions	p. 58
An Advocate's Perspective on Newborn Screening Policy	p. 89
Newborn Screening for Conditions That Do Not Meet the Wilson and Jungner Criteria: The Case of Duchenne Muscular Dystrophy	p. 106
Lessons to Be Learned from the Move toward Expanded Newborn Screening	p. 125
State Newborn Screening Advisory Committees: How Programs Introduce Public Participation into Decision Making	p. 136
Racial/Ethnic Communities and Newborn Screening Policies	p. 160
The Role of the Federal Government in Supporting State Newborn Screening Programs	p. 178
What Is the Role for Evidence-Based Decision Making in Expanded Newborn Screening?	p. 195
Research for Newborn Screening: Developing a National Framework	p. 212
Ethical and Policy Issues Involving Research with Newborn Screening Blood Samples	p. 237
Parental Permission for Research in Newborn Screening	p. 255
Population-Based Research within a Public Health Service: Two Models for Compliance with the Common Rule in the Massachusetts Newborn Screening Program	p. 274
Ethical and Policy Implications of Conducting Carrier Testing and Newborn Screening for the Same Condition	p. 292
What Can We Do to Shape the Future of Newborn Screening? Conclusions and Recommendations	p. 312
Appendix: Descriptions of Five Genetic Disorders	p. 331
List of Abbreviations and Acronyms	p. 343
Index	p. 345
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