Thursday, June 21, 2012
Figure 1. Open-access model for patient data sharing. Two groups are hoping to make patient
health and outcome data-and associated genomic and molecular information-openly
available to facilitate translational research.
Bionetworks launched a portal through which users can contribute
their own health and genomic data, and a report from the U.S. National Academy of Sciences is calling for the
creation of a national infrastructure for accessing and analyzing open-source
models, health and molecular data is collected from clinical trials and routine
health visits [a] using
a legal framework that protects privacy and ensures appropriate downstream uses
The data from individuals [c] are
then de-identified [d] and
made available for academic and industry research, as well as ultimately to inform
clinical care [e].