Ethics and newborn genetic screening: new technologies, new challenges
Gespeichert in:
| Format: | Buch |
|---|---|
| Sprache: | English |
| Veröffentlicht: |
Baltimore
Johns Hopkins Univ. Press
2009
|
| Schlagworte: | |
| Online-Zugang: | Contributor biographical information Publisher description Inhaltsverzeichnis |
| Beschreibung: | Includes bibliographical references and index |
| Beschreibung: | XVI, 354 S. |
| ISBN: | 0801891515 9780801891519 |
Internformat
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| 245 | 1 | 0 | |a Ethics and newborn genetic screening |b new technologies, new challenges |c ed. by Mary Ann Baily ... |
| 264 | 1 | |a Baltimore |b Johns Hopkins Univ. Press |c 2009 | |
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| 650 | 7 | |a Diagnose |2 gtt | |
| 650 | 7 | |a Dilemma's |2 gtt | |
| 650 | 7 | |a Ethische aspecten |2 gtt | |
| 650 | 7 | |a Pasgeborenen |2 gtt | |
| 650 | 7 | |a Screening |2 gtt | |
| 650 | 4 | |a Ethik | |
| 650 | 4 | |a Genetic disorders |x Diagnosis |x Moral and ethical aspects | |
| 650 | 4 | |a Newborn infants |x Diseases |x Diagnosis |x Moral and ethical aspects | |
| 650 | 4 | |a Genetic screening |x Moral and ethical aspects | |
| 650 | 4 | |a Genetic Diseases, Inborn |x diagnosis | |
| 650 | 4 | |a Neonatal Screening |x ethics | |
| 650 | 4 | |a Genetic Screening |x ethics | |
| 650 | 4 | |a Health Policy | |
| 650 | 4 | |a Infant, Newborn | |
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Datensatz im Suchindex
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| adam_text | Titel: Ethics and newborn genetic screening
Autor: Baily, Mary Ann
Jahr: 2009
Contents
List of Contributors vii
Preface ix
1 Overview 1
Mary Ann Baily and Thomas H. Murray
2 Fair Distribution of Newborn Screening Costs and Benefits 19
Mary Ann Baily
3 Cost-Effectiveness as a Criterion for Newborn Screening
Policy Decisions 58
Scott D.Grosse
4 An Advocate s Perspective on Newborn Screening Policy 89
Jannine De Mars Cody
5 Newborn Screening for Conditions That Do Not Meet the Wilson and
Jungner Criteria: The Case of Duchenne Muscular Dystrophy 106
Lainie Friedman Ross
6 Lessons to Be Learned from the Move toward Expanded
Newborn Screening 125
Ellen Wright Clayton
7 State Newborn Screening Advisory Committees: How Programs
Introduce Public Participation into Decision Making 136
Bruce Jennings and Andrea Bonnicksen
8 Racial/Ethnic Communities and Newborn Screening Policies 160
Toby Citrin and Stephen M. Model/
vi CONTENTS
9 The Role of the Federal Government in Supporting State Newborn
Screening Programs 178
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? 195
Virginia A. Moyer, Ned Calonge, Steven M. Teutsch, Jeffrey R. Botkin,
on behalf of the United States Preventive Services Task Force
11 Research for Newborn Screening: Developing a National
Framework 212
Jeffrey R. Botkin
12 Ethical and Policy Issues Involving Research with Newborn
Screening Blood Samples 237
Karen J. Maschke
13 Parental Permission for Research in Newborn Screening 255
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 2 74
Anne Marie Comeau and Donna E. Levin
15 Ethical and Policy Implications of Conducting Carrier Testing and
Newborn Screening for the Same Condition 292
Benjamin S. Wilfond
16 What Can We Do to Shape the Future of Newborn Screening?
Conclusions and Recommendations 312
Mary Ann Baily and Thomas H. Murray
Appendix: Descriptions of Five Genetic Disorders 331
List of Abbreviations and Acronyms 343
Index 345
|
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| spelling | Ethics and newborn genetic screening new technologies, new challenges ed. by Mary Ann Baily ... Baltimore Johns Hopkins Univ. Press 2009 XVI, 354 S. txt rdacontent n rdamedia nc rdacarrier Includes bibliographical references and index Aangeboren afwijkingen gtt Bio-ethiek gtt Diagnose gtt Dilemma's gtt Ethische aspecten gtt Pasgeborenen gtt Screening gtt Ethik Genetic disorders Diagnosis Moral and ethical aspects Newborn infants Diseases Diagnosis Moral and ethical aspects Genetic screening Moral and ethical aspects Genetic Diseases, Inborn diagnosis Neonatal Screening ethics Genetic Screening ethics Health Policy Infant, Newborn Neugeborenes (DE-588)4041781-5 gnd rswk-swf Genanalyse (DE-588)4200230-8 gnd rswk-swf Ethik (DE-588)4015602-3 gnd rswk-swf Reihenuntersuchung (DE-588)4277596-6 gnd rswk-swf Neugeborenes (DE-588)4041781-5 s Genanalyse (DE-588)4200230-8 s Reihenuntersuchung (DE-588)4277596-6 s Ethik (DE-588)4015602-3 s b DE-604 Baily, Mary Ann Sonstige oth http://www.loc.gov/catdir/enhancements/fy0902/2008033831-b.html Contributor biographical information http://www.loc.gov/catdir/enhancements/fy0902/2008033831-d.html Publisher description HBZ Datenaustausch application/pdf http://bvbr.bib-bvb.de:8991/F?func=service&doc_library=BVB01&local_base=BVB01&doc_number=017622454&sequence=000004&line_number=0001&func_code=DB_RECORDS&service_type=MEDIA Inhaltsverzeichnis |
| spellingShingle | Ethics and newborn genetic screening new technologies, new challenges Aangeboren afwijkingen gtt Bio-ethiek gtt Diagnose gtt Dilemma's gtt Ethische aspecten gtt Pasgeborenen gtt Screening gtt Ethik Genetic disorders Diagnosis Moral and ethical aspects Newborn infants Diseases Diagnosis Moral and ethical aspects Genetic screening Moral and ethical aspects Genetic Diseases, Inborn diagnosis Neonatal Screening ethics Genetic Screening ethics Health Policy Infant, Newborn Neugeborenes (DE-588)4041781-5 gnd Genanalyse (DE-588)4200230-8 gnd Ethik (DE-588)4015602-3 gnd Reihenuntersuchung (DE-588)4277596-6 gnd |
| subject_GND | (DE-588)4041781-5 (DE-588)4200230-8 (DE-588)4015602-3 (DE-588)4277596-6 |
| title | Ethics and newborn genetic screening new technologies, new challenges |
| title_auth | Ethics and newborn genetic screening new technologies, new challenges |
| title_exact_search | Ethics and newborn genetic screening new technologies, new challenges |
| title_full | Ethics and newborn genetic screening new technologies, new challenges ed. by Mary Ann Baily ... |
| title_fullStr | Ethics and newborn genetic screening new technologies, new challenges ed. by Mary Ann Baily ... |
| title_full_unstemmed | Ethics and newborn genetic screening new technologies, new challenges ed. by Mary Ann Baily ... |
| title_short | Ethics and newborn genetic screening |
| title_sort | ethics and newborn genetic screening new technologies new challenges |
| title_sub | new technologies, new challenges |
| topic | Aangeboren afwijkingen gtt Bio-ethiek gtt Diagnose gtt Dilemma's gtt Ethische aspecten gtt Pasgeborenen gtt Screening gtt Ethik Genetic disorders Diagnosis Moral and ethical aspects Newborn infants Diseases Diagnosis Moral and ethical aspects Genetic screening Moral and ethical aspects Genetic Diseases, Inborn diagnosis Neonatal Screening ethics Genetic Screening ethics Health Policy Infant, Newborn Neugeborenes (DE-588)4041781-5 gnd Genanalyse (DE-588)4200230-8 gnd Ethik (DE-588)4015602-3 gnd Reihenuntersuchung (DE-588)4277596-6 gnd |
| topic_facet | Aangeboren afwijkingen Bio-ethiek Diagnose Dilemma's Ethische aspecten Pasgeborenen Screening Ethik Genetic disorders Diagnosis Moral and ethical aspects Newborn infants Diseases Diagnosis Moral and ethical aspects Genetic screening Moral and ethical aspects Genetic Diseases, Inborn diagnosis Neonatal Screening ethics Genetic Screening ethics Health Policy Infant, Newborn Neugeborenes Genanalyse Reihenuntersuchung |
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