Public health surveillance of genetic information: Ethical and legal responses to social risk

Scott Burris, Lawrence O. Gostin and Deborah Tress

in Genetics and Public Health in the 21st Century

Published in print September 2000 | ISBN: 9780195128307
Published online September 2009 | e-ISBN: 9780199864485 | DOI:

Series: Oxford Monographs on Medical Genetics

Public health surveillance of genetic information: Ethical and legal responses to social risk

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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. Although surveillance of genetic information will significantly advance the public's health, it also entails some real and perceived risks. 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. But even when individual interests are well protected by law, perceptions of risk to social status, employment, or other relationships can persist and confound useful public health data collection. This chapter explores the problem that such “social risk” poses to public health collection of genetic data. It 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. It concludes with recommendations for surveillance policy and research.

Keywords: public health practice; genetic surveillance; social aspects; social risks; ethical principles

Chapter.  9023 words. 

Subjects: Public Health and Epidemiology

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