title: Implications of Internet availability of genomic information for public health practice.
abstract: Tensions in the field have emerged over how best to communicate to the public about genomic discoveries in an era of direct-to-consumer (DTC) DNA testing services available through the Internet. Concerns over what the psychological and behavioral response might be to a nuanced, multiplex risk message have spurred some to offer caution in communicating to the public about personalized risk until the necessary research has been completed on how to communicate effectively. The popularization of DTC testing services, along with a spreading Internet culture on transparency for personal data, may make 'waiting to communicate' a moot point. To steer communication efforts in the midst of increasing access to personal genomic information, a self-regulation framework is presented. The framework emphasizes the importance of presenting a coherent message in all communiqués about public health genomics. Coherence should be based on an evidence-based model of how the public processes information about health conditions and an emphasis on risk-to-action links. Recommendations from the President's Council of Advisors for Science and Technology are reviewed as a way of identifying targets of opportunity for structured communications both within the healthcare system and in the broader external ecosystem of publicly available health information technologies.
authors.affiliation: National Cancer Institute, National Institutes of Health, 6130 Executive Boulevard, Bethesda, MD 20892-7365, USA. hesseb@mail.nih.gov
authors.forename: B W
authors.initials: BW
authors.lastname: Hesse
authors.forename: N K
authors.initials: NK
authors.lastname: Arora
authors.forename: M J
authors.initials: MJ
authors.lastname: Khoury
mesh_terms: D022126:Access to Information; D003142:Communication; D005820:Genetic Testing; D015894:Genome, Human; D023281:Genomics; D006291:Health Policy; D006801:Humans; D020407:Internet; D008490:Medical Informatics; D011634:Public Health / Q000379:methods*; D015980:Public Health Practice; D012306:Risk; D017216:Telemedicine / Q000379:methods; D013997:Time Factors