Genetics and Public Health in the 21st Century Using Genetic Information to Improve Health and Prevent Disease

by Khoury, Muin J.; Burke, Wylie; Thomson, Elizabeth J.

• ISBN13: 9780195128307
• ISBN10: 0195128303
• Format: Hardcover
• Copyright: 2000-08-03
• Publisher: Oxford University Press

Summary

With the accelerating discovery of human genes, public health professionals are increasingly confronted with a large body of scientific information that will guide public health action. Because the broad mission of public health is to fulfill society's interest in assuring conditions in whichpeople can be healthy, the integration of new genetic information in public health research, policy, and program development is unavoidable. Public health leadership is urgently needed to use genetic information to improve health and prevent disease, and to address ethical, legal and social issuesresulting from inappropriate use of such information. In the not too-distant future, disease prevention and health promotion programs will routinely consider whether or not to use genetic information to help target behavioral, medical or environmental intervention activities in order to maximizebenefit and minimize costs and harm to individuals. In anticipation of the expected growth at the interface of genetics and public health, this book delineates a framework for the integration of advances in human genetics into public health practice. It provides a comprehensive review of publichealth genetics, including chapters on important general issues such as newborn and other genetic screening, the delivery of genetic services, and the ethical, legal and social implications of the use of genetics within public health. It also reviews relevant clinical topics, the historicalbackground, cross-cultural aspects, and communication issues. Contributors come from a wide range of fields including epidemiology, biostatistics, health policy and management, health services research, behavioral and social sciences, ethics, law, health economics, and laboratory sciences.

Table of Contents

Contributors	xv
PART I GENETICS AND PUBLIC HEALTH: AN OVERVIEW
Genetics and Public Health: A Framework for the Integration of Human Genetics into Public Health Practice	3	(22)
Muin J. Khoury
Wylie Burke
Elizabeth J. Thomson
Genetics and Public Health: Historical Perspectives and Current Challenges and Opportunities	25	(20)
Gilbert S. Omenn
The Human Genome Project: Evolving Status and Emerging Opportunities for Disease Prevention	45	(16)
Leslie Fink
Francis S. Collins
Models of Public Health Genetic Policy Development	61	(22)
Benjamin S. Wilfond
Elizabeth J. Thomson
The Multidisciplinary Nature of Public Health Genetics in Research and Education	83	(20)
Melissa A. Austin
Patricia A. Peyser
PART II PUBLIC HEALTH ASSESSMENT
Epidemiology, Molecular Biology, and Public Health	103	(20)
Janice S. Dorman
Donald R. Mattison
Surveillance for Birth Defects and Genetic Diseases	123	(18)
Lorenzo D. Botto
Pierpaolo Mastroiacovo
Surveillance for Hemophilia and Inherited Hematologic Disorders	141	(10)
J. Michael Soucie
Frederick R. Rickles
Bruce L. Evatt
Public Health Assessment of Genetic Predisposition to Cancer	151	(22)
Steven S. Coughlin
Wylie Burke
Public Health Assessment of Genetic Susceptibility to Infectious Diseases: Malaria, Tuberculosis, and HIV	173	(30)
Janet M. McNicholl
Marie V. Downer
Michael Aidoo
Thomas Hodge
Venkatachalam Udhayakumar
Public Health Assessment of Genetic Information in the Occupational Setting	203	(20)
Paul A. Schulte
D. Gayle DeBord
PART III EVALUATION OF GENETIC TESTING
Medical and Public Health Strategies for Ensuring the Quality of Genetic Testing	223	(20)
Michael S. Watson
Newborn Screening Quality Assurance	243	(18)
W. Harry Hannon
L. Omar Henderson
Carol J. Bell
PART IV DEVELOPING, IMPLEMENTING, AND EVALUATING POPULATION INTERVENTIONS
Public Health Needs Assessment for State-Based Genetic Services Delivery	261	(12)
Robert M. Fineman
Debra Lochner Doyle
Access to Genetic Services in the United States: A Challenge to Genetics in Public Health	273	(18)
Jane S. Lin-Fu
Michele Lloyd-Puryear
Community Genetics in The Netherlands	291	(10)
Leo P. ten Kate
Delivery of Genetic Services in Developing Countries	301	(28)
Victor B. Penchaszadeh
Genetics and Prevention Effectiveness	329	(32)
Scott D. Grosse
Steven M. Teutsch
Impact of Genetic Information and Genetic Counseling on Public Health	361	(24)
Judith L. Benkendorf
Beth N. Peshkin
Caryn Lerman
Lessons Learned from Newborn Screening for Phenylketonuria	385	(20)
Kenneth A. Pass
Newborn Screening for Cystic Fibrosis: A Paradigm for Public Health Geogetics Policy Development	405	(26)
Philip M. Farrell
Michael R. Kosorok
Michael J. Rock
Anita Laxova
Lan Zeng
Gary Hoffman
Ronald H. Laessig
Mark L. Splaingard
Newborn Screening for Sickle Cell Disease: Public Health Impact and Evaluation	431	(16)
Richard S. Olney
Public Health Strategies to Prevent the Complications of Hemochromatosis	447	(16)
Wylie Burke
Mary E. Cogswell
Sharon M. McDonnell
Adele Franks
Applying Genetic Strategies to Prevent Atherosclerosis	463	(26)
Roger R. Williams
Paul N. Hopkins
Lily L. Wu
Steven C. Hunt
PART V GENETICS AND PUBLIC HEALTH: ETHICAL, LEGAL, AND SOCIAL ISSUES
Genetics, Public Health, and the Law	489	(16)
Ellen Wright Clayton
Genetics and Public Health: Informed Consent Beyond the Clinical Encounter	505	(22)
Nancy Press
Ellen Wright Clayton
Public Health Surveillance of Genetic Information: Ethical and Legal Responses to Social Risk	527	(22)
Scott Burris
Lawrence O. Gostin
Deborah Tress
PART VI COMMUNICATION, EDUCATION, AND INFORMATION DISSEMINATION
Principles and Practices of Communication Processes for Genetics in Public Health	549	(20)
Celeste M. Condit
Roxanne L. Parrott
Beth O'Grady
Training in Public Health Genetics	569	(10)
Susan M. Caumartin
Diane L. Baker
Carl F. Marrs
Consumer Perspectives on Genetic Testing: Lessons Learned	579	(24)
Mary E. Davidson
Karey David
Nancy Hsu
Toni I. Pollin
Joan O. Weiss
Nachama Wilker
Mary Ann Wilson
Using the Internet to Disseminate Genetics Information for Public Health	603	(14)
Leslie A. O'Leary
Debra L. Collins
Index	617