- Title Pages
- Preface
- Acknowledgments
- Contributors
- 1 Genetics and public health: A framework for the integration of human genetics into public health practice
- 2 Genetics and public health: historical perspectives and current challenges and opportunities
- 3 The human genome project: evolving status and emerging opportunities for disease prevention
- 4 Models of public health genetic policy development
- 5 The multidisciplinary nature of public health genetics in research and education
- 6 Epidemiology, molecular biology, and public health
- 7 Surveillance for birth defects and genetic diseases
- 8 Surveillance for hemophilia and inherited hematologic disorders
- 9 Public health assessment of genetic predisposition to cancer
- 10 Public health assessment of genetic susceptibility to infectious diseases: malaria, tuberculosis, and HIV
- 11 Public health assessment of genetic information in the occupational setting
- 12 Medical and public health strategies for ensuring the quality of genetic testing
- 13 Newborn screening quality assurance
- 14 Public health needs assessment for state-based genetic services delivery
- 15 Access to genetic services in the United States: A challenge to genetics in public health
- 16 Community genetics in the Netherlands
- 17 Delivery of genetic services in developing countries
- 18 Genetics and prevention effectiveness
- 19 Impact of genetic information and genetic counseling on public health
- 20 Lessons learned from newborn screening for phenylketonuria
- 21 Newborn screening for cystic fibrosis: A paradigm for public health genetics policy development
- 22 Newborn screening for sickle cell disease: public health impact and evaluation
- 23 Public health strategies to prevent the complications of hemochromatosis
- 24 Applying genetic strategies to prevent atherosclerosis
- 25 Genetics, public health, and the law
- 26 Genetics and public health: informed consent beyond the clinical encounter
- 27 Public health surveillance of genetic information: Ethical and legal responses to social risk
- 28 Principles and practices of communication processes for genetics in public health
- 29 Training in public health genetics
- 30 Consumer perspectives on genetic testing: lessons learned
- 31 Using the internet to disseminate genetics information for public health
- INDEX
Newborn screening for sickle cell disease: public health impact and evaluation
Newborn screening for sickle cell disease: public health impact and evaluation
- Chapter:
- (p.431) 22 Newborn screening for sickle cell disease: public health impact and evaluation
- Source:
- Genetics and Public Health in the 21st Century
- Author(s):
Richard S. Olney
- Publisher:
- Oxford University Press
This chapter provides a broad overview of public health aspects of newborn hemoglobinopathy screening in the United States, with special emphasis on epidemiologic efforts to evaluate pediatric outcomes after newborn screening. Despite controversies about cost-effectiveness and ethical quandaries of carrier identification and targeted versus universal approaches, newborn screening programs for hemoglobinopathies in the U.S. are firmly entrenched, at least in part because of strong epidemiological data suggesting that early identification of affected newborns is a rational policy. As prevention-oriented policies are directed toward large populations and manifestations of disease complications change, however, ongoing data collection is needed to ensure the effectiveness of these strategies at the community level.
Keywords: newborn screening, genetic screening, public health, newborn hemoglobinopathy screening, cost-effectiveness, hemoglobinopathies
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- Title Pages
- Preface
- Acknowledgments
- Contributors
- 1 Genetics and public health: A framework for the integration of human genetics into public health practice
- 2 Genetics and public health: historical perspectives and current challenges and opportunities
- 3 The human genome project: evolving status and emerging opportunities for disease prevention
- 4 Models of public health genetic policy development
- 5 The multidisciplinary nature of public health genetics in research and education
- 6 Epidemiology, molecular biology, and public health
- 7 Surveillance for birth defects and genetic diseases
- 8 Surveillance for hemophilia and inherited hematologic disorders
- 9 Public health assessment of genetic predisposition to cancer
- 10 Public health assessment of genetic susceptibility to infectious diseases: malaria, tuberculosis, and HIV
- 11 Public health assessment of genetic information in the occupational setting
- 12 Medical and public health strategies for ensuring the quality of genetic testing
- 13 Newborn screening quality assurance
- 14 Public health needs assessment for state-based genetic services delivery
- 15 Access to genetic services in the United States: A challenge to genetics in public health
- 16 Community genetics in the Netherlands
- 17 Delivery of genetic services in developing countries
- 18 Genetics and prevention effectiveness
- 19 Impact of genetic information and genetic counseling on public health
- 20 Lessons learned from newborn screening for phenylketonuria
- 21 Newborn screening for cystic fibrosis: A paradigm for public health genetics policy development
- 22 Newborn screening for sickle cell disease: public health impact and evaluation
- 23 Public health strategies to prevent the complications of hemochromatosis
- 24 Applying genetic strategies to prevent atherosclerosis
- 25 Genetics, public health, and the law
- 26 Genetics and public health: informed consent beyond the clinical encounter
- 27 Public health surveillance of genetic information: Ethical and legal responses to social risk
- 28 Principles and practices of communication processes for genetics in public health
- 29 Training in public health genetics
- 30 Consumer perspectives on genetic testing: lessons learned
- 31 Using the internet to disseminate genetics information for public health
- INDEX
