ABSTRACT

Sharon Terry and Mary Davidson (2000: 148), founders of North American genetic support groups and consecutive presidents of the Genetic Alliance, opened a recent article they co-authored in the academic journal Community Genetics with the following enthusiastic manifesto:

World communities stand at the brink of a new age precipitated by escalating genetic discoveries. The intense hype and fragile hope of this new age play to an eager and anxious public. This drama’s milieu consists of multiple frameworks emerging from diverse communities. … However, and most poignantly, its trial by fire will occur in the minds, hearts and bodies of individuals seeking better healthcare, enhanced treatments and ultimately survival. These stakeholders must be informed partners and active collaborators.