- 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 cystic fibrosis: A paradigm for public health genetics policy development
Newborn screening for cystic fibrosis: A paradigm for public health genetics policy development
- Chapter:
- (p.405) 21 Newborn screening for cystic fibrosis: A paradigm for public health genetics policy development
- Source:
- Genetics and Public Health in the 21st Century
- Author(s):
Philip M. Farrell
Michael R. Kosorok
Michael J. Rock
Anita Laxova
Lan Zeng
Gary Hoffman
Ronald H. Laessig
Mark L. Splaingard
- Publisher:
- Oxford University Press
This chapter illustrates how scientific studies can be used to facilitate public health policy decisions, particularly those concerned with newborn screening programs. More specifically, it reviews the autosomal recessive hereditary disorder cystic fibrosis (CF) and describes how it has become a model disease for policy development in the application of molecular genetics testing to newborn screening. The chapter includes a summary of the salient characteristics of CF, with particular emphasis on epidemiologic and diagnostic considerations; a brief overview of the immunoreactive trypsinogen (IRT) and IRT/DNA tests used to facilitate CF diagnosis in the newborn period through screening; and detailed information on the unique features and results of the Wisconsin CF Neonatal Screening Project, including how and why it was planned, organized, and conducted to access the benefits, risks, and costs of CF neonatal screening.
Keywords: cystic fibrosis, newborn screening, genetic screening, policy decisions, cystic fibrosis
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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
