Research Catalog

Title

Ethics and newborn genetic screening : new technologies, new challenges / edited by Mary Ann Baily and Thomas H. Murray.

Publication

Baltimore : Johns Hopkins University Press, 2009.

Supplementary Content

• Contributor biographical information
• Publisher description

Items in the Library & Off-site

Holdings

Details

Additional Authors

• Baily, Mary Ann.
• Murray, Thomas H., 1946-

Description

xvi, 354 pages; 24 cm

Subjects

• Health Policy
• Genetic disorders > Diagnosis > Moral and ethical aspects
• Newborn infants > Diseases > Diagnosis > Moral and ethical aspects
• Neonatal Screening > ethics
• Genetic Testing > ethics
• Infant, Newborn
• Genetic screening > Moral and ethical aspects
• Genetic Diseases, Inborn > diagnosis

Bibliography (note)

• Includes bibliographical references and index.

Contents

1. Overview / Mary Ann Baily and Thomas H. Murray -- 2. Fair Distribution of Newborn Screening Costs and Benefits / Mary Ann Baily -- 3. Cost-Effectiveness as a Criterion for Newborn Screening Policy Decisions / Scott D. Grosse -- 4. An Advocate's Perspective on Newborn Screening Policy / Jannine De Mars Cody -- 5. Newborn Screening for Conditions That Do Not Meet the Wilson and Jungner Criteria: The Case of Duchenne Muscular Dystrophy / Lainie Friedman Ross -- 6. Lessons to Be Learned from the Move toward Expanded Newborn Screening / Ellen Wright Clayton -- 7. State Newborn Screening Advisory Committees: How Programs Introduce Public Participation into Decision Making / Bruce Jennings and Andrea Bonnicksen -- 8. Racial/Ethnic Communities and Newborn Screening Policies / Toby Citrin and Stephen M. Modell -- 9. The Role of the Federal Government in Supporting State Newborn Screening Programs / Michele A. Lloyd-Puryear, Bradford L. Therrell, Marie Y. Mann, James R. Eckman and Joseph Telfair -- 10. What Is the Role for Evidence-Based Decision Making in Expanded Newborn Screening? / Virginia A. Moyer, Ned Colonge, Steven M. Teutsch and Jeffrey R. Botkin -- 11. Research for Newborn Screening: Developing a National Framework / Jeffrey R. Botkin -- 12. Ethical and Policy Issues Involving Research with Newborn Screening Blood Samples / Karen J. Maschke -- 13. Parental Permission for Research in Newborn Screening / Jeffrey R. Botkin -- 14. Population-Based Research within a Public Health Service: Two Models for Compliance with the Common Rule in the Massachusetts Newborn Screening Program / Anne Marie Comeau and Donna E. Levin -- 15. Ethical and Policy Implications of Conducting Carrier Testing and Newborn Screening for the Same Condition / Benjamin S. Wilfond -- 16. What Can We Do to Shape the Future of Newborn Screening? Conclusions and Recommendations / Mary Ann Baily and Thomas H. Murray -- Appendix. Descriptions of Five Genetic Disorders.

ISBN

• 0801891515
• 9780801891519 (hardcover : alk. paper)

LCCN

• 2008033831
• 99937688489

OCLC

• ocn237195221
• 237195221
• SCSB-5474016

Owning Institutions

Columbia University Libraries