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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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Genetics and public health: informed consent beyond the clinical encounter

Genetics and public health: informed consent beyond the clinical encounter

Chapter:
(p.505) 26 Genetics and public health: informed consent beyond the clinical encounter
Source:
Genetics and Public Health in the 21st Century
Author(s):

Nancy Press

Ellen Wright Clayton

Publisher:
Oxford University Press
DOI:10.1093/acprof:oso/9780195128307.003.0026

This chapter begins with a discussion of the barriers to adequate informed consent. It then presents examples that show how public health and genetics might come together, either in research or in clinical programs. The examples cover prenatal genetic screening, newborn screening programs, and the ways in which all genetics research inevitably involves families. It is argued that in designing modes of obtaining informed consent, explicit consideration must be given to the structural forces that may make truly informed consent difficult in each particular situation. Moreover, it must be realized that these structural forces have the potential to increase in importance and impact when coupled with any program that purports to have the public's health at stake.

Keywords:   public health, informed consent, screening programs, families

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