In the name of privacy and protection of study subjects, the research community has, albeit with good intentions, broken the historical doctor-patient compact, distorting an ideal of information exchange that might inform subjects of health risks or benefits. The advent of genome-scale measurements and health information technologies allow us to reconnect patient subjects and researchers in a manner respectful of regulations and privacy concerns, yet maximizing potential benefit to the public and the individual in the course of research. A solution must anonymize information while making discoveries available to participants who “tune in”. Though seemingly paradoxical, our proposed solution is comparable to UHF/VHF television. To “participate”, an individual buys a television and privately decides when and what he watches. In the research analogy, a subject’s “programming” is a product of her own information and the aggregated study results. Her reception of research results depends on whether she “tunes in” to the broadcast. We refer to this proposed recasting of the collaborative clinical research regime as the Informed Cohort.

Our implementation of the Informed Cohort at Children's Hospital, Boston is called the Gene Partnership Project (GPP) which has its first testbed in the Developmental Medicine Center scheduled for 2008. The technology on which it is built includes the Indivo project (formerly called PING) and the genomically refined version of it called G-PING. Both Indivo and G-PING have been generously funded by the National Institutes of Health and the National Library of Medicine, in particular.