Consumer perspectives on genetic testing: lessons learned

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.