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Empowering the Public to Be Informed Consumers of Genetic Technologies and Services

Terry S.F.a,b · Davidson M.E.a
aGenetic Alliance, Washington, D.C., and bPXE International, Sharon, Mass., USA Community Genet 2000;3:148–150 (DOI:10.1159/000051127)

Abstract

Objective: The genetics community, together with lay advocacy organizations and the general public, should strategically plan a focused, culturally competent, community-based public genetic literacy program. Methods: Inclusive of all stakeholders (consumers, professionals, disability communities, disenfranchised communities), society can advance this objective through a proactive, focused and coordinated outreach to build public awareness and understanding. Results: Genetic Alliance programs support consumers with genetic disorders, raise health professional awareness of their concerns, educate the public about emerging genetic information and technologies, increase access to high quality information resources, and advocate for public policies that ensure the promises of genetics. Conclusion: The challenge before the genetics community is to be proactive, clear, and inclusive. The public should be empowered to make informed choices, allowing the potential benefits of genetic technologies and services to become manifest in improved healthcare and quality of life.

 

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