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

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About this work


Baltimore : Johns Hopkins University Press, 2009.

Physical description

xvi, 354 pages ; 24 cm


Fair distribution of newborn screening costs and benefits / Mary Ann Baily -- Cost-effectiveness as a criterion for newborn screening policy decisions / Scott D. Grosse -- An advocate's perspective on newborn screening policy / Jannine De Mars Cody -- Newborn screening for conditions that do not meet the Wilson and Jungner criteria : the case of Duchenne muscular dystrophy / Lainie Friedman Ross -- Lessons to be learned from the move toward expanded newborn screening / Ellen Wright Clayton -- State newborn screening advisory committees : how programs introduce public participation into decision making / Bruce Jennings and Andrea Bonnicksen -- Racial/ethnic communities and newborn screening policies / Toby Citrin and Stephen M. Modell.
The role of the federal government in supporting state newborn screening programs / Michele A. Lloyd-Puryear ... [et al.] -- What is the role for evidence-based decision making in expanded newborn screening? / Virginia A. Moyer ... [et al.] -- Research for newborn screening : developing a national framework / Jeffrey R. Botkin -- Ethical and policy issues involving research with newborn screening blood samples / Karen J. Maschke -- Parental permission for research in newborn screening / Jeffrey R. Botkin -- 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 -- Ethical and policy implications of conducting carrier testing and newborn screening for the same condition / Benjamin S. Wilfond -- What can we do to shape the future of newborn screening? : conclusions and recommendations / Mary Ann Baily and Thomas H. Murray.

Bibliographic information

Includes bibliographical references and index.


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  • 0801891515
  • 9780801891519