Open Access News

News from the open access movement

Wednesday, July 02, 2008

More on the balance of OA and patient privacy

Matthew Dublin, CARe Program's Balancing Act for Patient Privacy and Open Access, Genome Technology, July/August 2008.  Excerpt:

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." ...