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Book
These chapters were published with modifications by Oxford University Press (2000) |
Genetics and Public Health in the 21st Century
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Using Genetic Information to Improve Health and Prevent Disease
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Edited by Muin J. Khoury,
M.D., Ph.D. Wylie Burke,
M.D., Ph.D. Elizabeth J.
Thomson, M.S., R.N., C.G.C.
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Because the broad mission of public health is to fulfill society's interest in assuring conditions in which people can be healthy, there will be unavoidable integration of new genetic technologies and information into public health programs to target intervention strategies that will prevent morbidity, mortality, and disability from a wide array of conditions. Public health professionals will increasingly use genetic technologies and information in research, policy, and program development. This is not different from the expected integration of genetics into health care in general across the various subspecialties. In anticipation of the expected growth at the interface of genetics and public health, we have attempted in this book to delineate a framework for the integration of advances in human genetics into public health practice. The book is intended to be a resource to public health students, researchers, and practitioners. Our contributors come from a wide range of disciplines including epidemiology, biostatistics, clinical medicine, health policy and management, health services research, behavioral and social sciences, ethics, law, health economics, and laboratory sciences. Researchers, students, and practitioners in various medical and nursing fields should also benefit from having their perspectives on the emerging and often complex issues of genetic testing as a public health issue. The book is divided into six parts. Part I presents overarching principles of human genetics in public health. It includes a framework for integrating genetics into public health practice (Chapter 1), historical perspectives (Chapter 2), an update on the impact of the Human Genome Project (Chapter 3), an overview of models of public health policy decisions in genetics (Chapter 4), and a discussion of the multidisciplinary nature of research and training in genetics and public health (Chapter 5). Part II covers issues related to public health assessment in genetics. It provides an overview of the interface between epidemiology and molecular biology (Chapter 6) and discusses issues of surveillance in birth defects and genetic disorders (Chapter 7), with a focus on hematologic diseases (Chapter 8). This section further deals with public health assessment in the genetics of cancer (Chapter 9), infectious diseases (Chapter 10), and occupational health (Chapter 11). Part III presents selected examples of public health evaluation of genetic testing. It discusses various strategies to ensure the quality, safety, and effectiveness of genetic testing (Chapter 12) and gives a specific example of newborn quality assurance screening (Chapter 13). Part IV identifies approaches and gives examples for developing, implementing, and evaluating population interventions that use genetic information to improve health. It contains chapters on population needs assessment and delivery of genetic services (Chapters 14 through 17), the application of prevention effectiveness principles to genetics programs (Chapter 18), and the impact of genetic counseling on public health (Chapter 19). Additional chapters in this section illustrate the process of policy and program development and evaluation in relation to specific disease conditions, such as phenylketonuria (Chapter 20), cystic fibrosis (Chapter 21), sickle cell disease (Chapter 22), hemochromatosis (Chapter 23), and coronary heart disease (Chapter 24). Part V addresses some but not all of the emerging ethical, legal, and social issues related to the integration of genetics into public health practice. It covers the interface among public health, genetics, and the law (Chapter 25), the informed consent process in traditional public health genetics programs (Chapter 26), and issues surrounding public health surveillance and information systems (Chapter 27). Finally, Part VI deals with communication, education, and the dissemination of genetic information in public health practice. It presents overall principles of communication science related to genetics and public health (Chapter 28), an overview of efforts to train public health professionals in genetics (Chapter 29), consumer perspectives on genetic testing (Chapter 30), and an account of the use of the Internet as an emerging medium for information dissemination in genetics and public health (Chapter 31). Although the interface of genetics and public health will continue to evolve over the next few years, we hope this volume will provide a solid foundation for increasing the level of awareness of the emerging role of genetics in public health practice in the 21st century. Atlanta, Ga. M.J.K. Seattle, Wash. W.B. Bethesda, Md. E.T. September 1999 |
Michael Aidoo,
Ph.D. Molecular Vaccine Section, Immunology Branch Division of Parasitic Diseases National Center for Infectious Diseases Centers for Disease Control and Prevention Atlanta, Georgia Melissa A. Austin, Ph.D. Diane L. Baker, M.S., C.G.C. Carol J. Bell , B.S., MT (ASCP) Judith L. Benkendorf, M.S., C.G.C. Lorenzo D. Botto, M.D. Wylie Burke, M.D., Ph.D. Scott Burris, J.D. |
Susan M. Caumartin, Ph.D. Ellen Wright Clayton, M.D., J.D. Mary Cogswell, Dr. P.H. Debra L. Collins, M.S. Francis S. Collins, M.D., Ph.D. Celeste M. Condit, Ph.D. Steven S. Coughlin, Ph.D. Karey David, B.A. Mary E. Davidson, M.S.W. |
D. Gayle DeBord,
Ph.D. Molecular and Genetic Monitoring Section Biomonitoring and Health Assessment Branch Division of Applied Research and Technology National Institute for Occupational Safety and Health Centers for Disease Control and Prevention Cincinnati, Ohio Janice S. Dorman, Ph.D. Marie V. Downer, M.D., M.P.H. Debra Lochner Doyle, M.S., C.G.C. Bruce L. Evatt, M.D. Philip M. Farrell, M.D., Ph.D. Robert M. Fineman, M.D., Ph.D. Leslie Fink , B.S. Adele Franks, M.D. Lawrence O. Gostin, J.D., L.L.D. |
Scott D. Grosse, Ph.D. Office of Program Evaluation and Legislation National Center for Environmental Health Centers for Disease Control and Prevention Atlanta, Georgia W. Harry Hannon, Ph.D. L. Omar Henderson, Ph.D. Thomas Hodge, Ph.D. Gary Hoffman Paul N. Hopkins, M.D., M.S.P.H. Nancy Hsu, B.A. Steven C. Hunt, Ph.D. Muin J. Khoury, M.D., Ph.D. Michael R. Kosorok, Ph.D. |
Ronald H. Laessig, Ph.D. Anita Laxova, B.S. Caryn Lerman, Ph.D. Jane S. Lin-Fu, M.D. Michele Lloyd-Puryear, M.D, Ph.D. Carl F. Marrs, Ph.D. Pierpaolo Mastroiacovo, M.D. Donald R. Mattison, M.D. Sharon McDonnell, M.D, M.P.H. |
Janet M. McNicholl, M.D., MS Beth O'Grady, B.S. Leslie A. O'Leary, Ph.D. Richard S. Olney, M.D. M.P.H. Gilbert S. Omenn, M.D., Ph.D. Roxanne L. Parrott, Ph.D. Kenneth A. Pass, Ph.D. Victor B. Penchaszadeh, M.D., M.S.P.H. Beth N. Peshkin, M.S., C.G.C. |
Patricia A. Peyser, Ph.D. Toni I. Pollin, M.S. Nancy Press, Ph.D. Frederick R. Rickles, M.D. Michael J. Rock, M.D. Paul A. Schulte, Ph.D. J. Michael Soucie, Ph.D. Mark L. Splaingard, M.D. Free University Amsterdam, The Netherlands Steven M. Teutsch, M.D., M.P.H. |
Elizabeth J. Thomson, M.S., R.N., C.G.C. Deborah Tress, J.D. Venkatachalam Udhayakumar, Ph.D. Michael S. Watson, Ph.D. Joan O. Weiss, M.S.W. Benjamin S. Wilfond, M.D. Nachama Wilker Roger R. Williams, M.D. ^ Mary Ann Wilson Lily Wu, Ph.D. Lan Zeng, M.S. |
^Deceased.
Table of Contents |
Part I GENETICS AND PUBLIC HEALTH:
AN OVERVIEW
Part II PUBLIC HEALTH ASSESSMENT
Part III EVALUATION OF GENETIC TESTING
Part IV DEVELOPING, IMPLEMENTING, AND EVALUATING POPULATION INTERVENTIONS
Part V GENETICS AND PUBLIC HEALTH: ETHICAL, LEGAL, AND SOCIAL ISSUES
Part VI COMMUNICATION, EDUCATION, AND INFORMATION DISSEMINATION
Reviews |
Book reviewed by M. Rothstein in the New England Journal of Medicine, November 23, 2000 (subscription paid acccess only) Book reviewed by Belle-Isle, L. in Chronic Dis Can; 2000; 21(3):157-8. Book reviewed by Dr. Ron Zimmern in Community Genetics, 2001 Book reviewed by Patricia Baird in Annals of the Royal College of Physicians and Surgeons of Canada, 2001 (March issue). Book reviewed by P. Phaorah in British Medical Journal, 2001 (April issue). Book reviewed by M.Caggana in Am J Human Genetics, 2001 (November issue). Book reviewed by Joel Zlotogora in Am J Medical Genetics, 2002 (July issue). |
Address correspondence to Dr Khoury at
Office of Genomics and Disease Prevention
Centers for Disease Control and Prevention
4770 Buford Hwy, Mail Stop K28
Atlanta, Georgia 30341