Linking the public voice with the genetic policy process: a case study

The application of genetic information will shape economies and lives throughout the next century and beyond. At the current pace of discovery, genetic research will bring advances in pharmaceuticals and therapeutic treatments that not only serve to reduce human suffering, but also offer people new choices and greater control over their lives. But, what humanity will do with this new technology and knowledge remains to be seen. Current thinking on our genetic future ranges from fearful predictions of dire consequences to bold visions of disease-free existence. Should citizens play a role in deciding how this new genetic information and technology will be used? And what strategies should be developed to achieve that goal? Geneforum, a new non-profit organization that works to incorporate public ethics and values into the genetic science policy making process through grassroots education and Internet dialogue, believes that citizens should be informed and active participants in the Gene Age. Geneforum creates environments for learning, facilitates forums for discussion and provides input to policy makers. Classroom workshops, Town Hall Meetings, public opinion research, publications, an interactive Web site, and talk-radio programming are all used to achieve these ends. Geneforum's experience in employing these communication strategies to help guide genetic privacy policy development in Oregon is the focus of this paper.