Families and Genetic Diagnoses in the Genomic and Internet Age

Abstract

The explosion of new knowledge and technologies stimulated by the Human Genome Project has ushered in the “genomic age,” where genetic components of diseases and disorders, their links, and processes are increasingly being revealed and understood at the molecular level. The genomic age coupled with the Internet, which offers quick access and circulation of information as well as numerous sites in which “knowledge” can be recreated or disputed, is changing the contexts and experiences of early childhood disability. This article examines this transformation using data from an ethnographic, longitudinal study of parents of young children with suspected or known genetic disorders. Here we describe how genetic information and the Internet affect parents' search for and understandings of genetic diagnoses, and how these 2 cultural forces may be changing medical, early intervention, and special education practices.