Public health surveillance of genetic information

Ethical and legal responses to social risk

Scott Burris, Lawrence O. Gostin, Deborah Tress

Research output: Chapter in Book/Report/Conference proceedingChapter

Abstract

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.

Original languageEnglish (US)
Title of host publicationGenetics and Public Health in the 21st Century: Using Genetic Information to Improve Health and Prevent Disease
PublisherOxford University Press
ISBN (Print)9780199864485, 9780195128307
DOIs
StatePublished - Sep 1 2009
Externally publishedYes

Fingerprint

Public Health Surveillance
Public Health
Public Health Practice
Antidotes
Social Problems
Population Genetics
Research
Population

Keywords

  • Ethical principles
  • Genetic surveillance
  • Public health practice
  • Social aspects
  • Social risks

ASJC Scopus subject areas

  • Medicine(all)

Cite this

Burris, S., Gostin, L. O., & Tress, D. (2009). Public health surveillance of genetic information: Ethical and legal responses to social risk. In Genetics and Public Health in the 21st Century: Using Genetic Information to Improve Health and Prevent Disease Oxford University Press. https://doi.org/10.1093/acprof:oso/9780195128307.003.0027

Public health surveillance of genetic information : Ethical and legal responses to social risk. / Burris, Scott; Gostin, Lawrence O.; Tress, Deborah.

Genetics and Public Health in the 21st Century: Using Genetic Information to Improve Health and Prevent Disease. Oxford University Press, 2009.

Research output: Chapter in Book/Report/Conference proceedingChapter

Burris, S, Gostin, LO & Tress, D 2009, Public health surveillance of genetic information: Ethical and legal responses to social risk. in Genetics and Public Health in the 21st Century: Using Genetic Information to Improve Health and Prevent Disease. Oxford University Press. https://doi.org/10.1093/acprof:oso/9780195128307.003.0027
Burris S, Gostin LO, Tress D. Public health surveillance of genetic information: Ethical and legal responses to social risk. In Genetics and Public Health in the 21st Century: Using Genetic Information to Improve Health and Prevent Disease. Oxford University Press. 2009 https://doi.org/10.1093/acprof:oso/9780195128307.003.0027
Burris, Scott ; Gostin, Lawrence O. ; Tress, Deborah. / Public health surveillance of genetic information : Ethical and legal responses to social risk. Genetics and Public Health in the 21st Century: Using Genetic Information to Improve Health and Prevent Disease. Oxford University Press, 2009.
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