Some information and condition are required by statute or regulation to be reported by physicians, laboratories and institutions to public health authorities. Data are gathered from a variety of sources, and in a variety of ways. Surveillance data can help detect epidemics, define problems, generate hypotheses and stimulate research, evaluate control measures, monitor changes in infectious agents, detect changes in health practices, and facilitate planning. Data collected through surveillance are used to study the prevalence, geographical distribution and natural history of a disease. The purposes of public health surveillance are to assess public health status, define public health priorities, evaluate programs, and stimulate research 2. Surveillance, defined as the “ongoing, systematic collection, analysis, and interpretation of outcome specific data for use in the planning, implementation, and evaluation of public health practice,” 2 will be a valuable tool in this work. Public health practitioners will be required to investigate the distribution of genetic variations that are associated with diseases, assess the prevalence of particular diseases with genetic components, evaluate genetic tests and interventions for preventing diseases on a population basis, and assure the quality of genetic tests 1. Promoting the public’s health and preventing disease and disability will increasingly require the translation of the new genetic vocabulary into practices that improve the health of the public. Public Health Surveillance for Genetic Information What is public health surveillance? It concludes with recommendations for surveillance policy and research. This chapter explores the problem that such “social risk” poses to public health collection of genetic data, discusses the capacities and limitations of law as an antidote to social risk, and presents ethical principles for understanding, and assessing, the benefits and risks of population-based genetics. Even when individual interests are well-protected by law, however, perceptions of risk to social status, employment or other relationships can persist and confound useful public health data collection. The social objective is to achieve the public good that comes from genetic information without unreasonable or unethical interference with the civil liberties of individuals. Although surveillance of genetic information will significantly advance the public’s health, it also entails some real and perceived risks. As the roles of specific genetic characteristics are better understood, epidemiologists will more often consider adding selected genetic information to the conditions subject to surveillance. The practice of public health begins with effective surveillance of physical characteristics, diseases, behavior and environmental conditions that significantly influence a population’s well-being. Beasley School of Law, Temple University, Philadelphia, PA 19122ĢGeorgetown/Johns Hopkins University, Washington, DC 20001ģOffice of the General Counsel, Centers for Disease Control and Prevention, 1600 Clifton Road, N.E., MS D53, Atlanta, Georgia 30333 Public Health Surveillance of Genetic Information: Ethical and Legal Responses to Social Risk Genetics and Public Health in the 21 st Century
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