One project making headway on the slippery slope of patient privacy versus free data access is the National Heart, Lung, and Blood Institute's Candidate Gene Association Resource project, known as CARe. The goal of the program is to provide a hosted resource for investigators where nine separate national heart, lung, and blood cohorts are combined to provide meta-analysis of clinical data from more than 50,000 patients together with genome-type data. The project's leaders had the hair-pulling task of striking a balance between how openly accessible they could make the data without compromising the patients' identity.
"By definition, when someone has been genotyped or has received whole genome scans, they're identified," says Marcia Nizzari, director of the informatics development program in the medical and population genetics group at the Broad Institute. "So there's an issue of how do you handle security and yet at the same time make things open enough to really make it a resource to the research community that's valuable." ...
Peter Suber at 7/02/2008 03:49:00 PM.
The open access movement:
Putting peer-reviewed scientific and scholarly literature
on the internet. Making it available free of charge and
free of most copyright and licensing restrictions.
Removing the barriers to serious research.