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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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Consumer perspectives on genetic testing: lessons learned

Consumer perspectives on genetic testing: lessons learned

(p.579) 30 Consumer perspectives on genetic testing: lessons learned
Genetics and Public Health in the 21st Century

Mary E. Davidson

Karey David

Nancy Hsu

Toni I. Pollin

Joan O. Weiss

Nachama Wilker

Mary Ann Wilson

Oxford University Press

The Genetic Alliance—a coalition of consumers, professionals, and support groups concerned with the needs of individuals and families living with genetic conditions—works to educate the general public and providers about the subtle, personal, and familial ramifications of genetic testing. Using the firsthand experiences of its consumer members as a powerful educational tool, the Alliance advocates for the development of genetic testing protocols and dynamic informed-consent standards to ensure autonomous and informed decision making that is founded on current, accurate information at every step of the testing, diagnostic, and treatment-management process. Scientists, ethicists, medical professionals, and other experts routinely play major roles in public policy decision making. The Alliance draws on more than a dozen years of firsthand experience with genetic educational programs for professionals and the public to present consumer perspectives on the policy implications of genetic testing and to demonstrate consumer participation as a value-added component in policy development. This chapter presents a unique window into the personal experiences of five individuals and their families who have had front-line experience with genetic testing.

Keywords:   public health, genetic testing, health care, Genetic Alliance

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