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Genetics and Public Health in the 21st CenturyUsing Genetic Information to Improve Health and Prevent Disease$
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Muin J. Khoury, Wylie Burke, and Elizabeth Thomson

Print publication date: 2000

Print ISBN-13: 9780195128307

Published to Oxford Scholarship Online: September 2009

DOI: 10.1093/acprof:oso/9780195128307.001.0001

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

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

Chapter:
(p.527) 27 Public health surveillance of genetic information: Ethical and legal responses to social risk
Source:
Genetics and Public Health in the 21st Century
Author(s):

Scott Burris

Lawrence O. Gostin

Deborah Tress

Publisher:
Oxford University Press
DOI:10.1093/acprof:oso/9780195128307.003.0027

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

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